2018 ANNUAL REPORT

Global Collaboration,

Action and Answers for MPS and ML

P.O. Box 14686Durham, NC 27709-4686

877.MPS.1001919.806.0101

MPSSOCIETY.ORGFollow us!

PICTURED ON THE COVER: Maura Mongan (MPS I)

CHAIRMAN OF THE BOARD LISA P. TODD

While 2018 was a fabulous year, I am even more excited about our opportunities in 2019.MISSION

The National MPS Society exists to cure, support and advocate for MPS and ML.

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“PRESIDENT AND CEO TERRI L. KLEIN

Our MPS and ML team is honored to serve our members and the broader rare disease community.

The Society is a trailblazer in rare disease research. In 2018, we awarded more than $550,000 in grants to the world’s leading researchers. This was made possible by the incredible dedication of our families, donors and the board of directors at fundraising events nationwide. In the last 20 years, the Society has funded more than $9 million in research. These are funds provided by you—our members, donors and supporters. Because of your generosity, we funded cutting-edge research in hematopoietic stem cell transplant, gene therapy, substrate degradation, animal models of MPS diseases, chaperone therapy, skeletal deprivation, blood assay development and inflammatory responses science. It is an exciting time in the world of medical advancements; we have witnessed the most clinical trials and research for MPS and ML diseases than ever before. Your support has been critical to this success.

The Society recognizes the importance of collaboration with other organizations and the funding of pivotal research. This collaboration exponentially increases the potential to identify and remove key scientific obstacles within our diseases which will lead to treatments and, ultimately, cures. These partnerships include various MPS family foundations, lysosomal disease advocacy organizations, the National Institutes of Health (NIH), the Lysosomal Disease Network, the University of Pennsylvania/Million Dollar Bike Ride and our sister MPS organizations within the International MPS Network (IMPSN).

A major highlight of 2018 was our hosting of the 15th International Symposium for MPS and Related Diseases. More than 1,000 attendees traveled to San Diego, CA, to participate in a global collaborative meeting. The family and scientific conferences were hosted in tandem, with many attendees flowing freely throughout. Scientists and industry stakeholders were provided three days of networking opportunities to stimulate research and guide future actions in addressing MPS and related diseases. In addition, new insights for breakthrough science in gene therapy and gene editing outcomes were presented. During the symposium, the “Life Achievement Awards in Science and Advocacy” were awarded to Mark Haskins, VMD, PhD, and Flavio Bertoglio, president of Italy’s MPS Society. This award is meaningful, as it was voted on by their peers from around the world.

THE NATIONAL MPS SOCIETY CONTINUES to be a global leader and advocate in the fight against MPS and ML. In 2018, the Society continued to maintain its crucial role in global initiatives and secured major gains by bridging our core goals among our primary stakeholders.

A major role of the National MPS Society is to bridge advocacy gaps for our families with local and federal government agencies. This includes providing testimony to the Federal Drug Administration (FDA), and meeting with the NIH. In late 2018, we met with the NIH and other MPS-related foundations (Team Sanfilippo and The Ryan Foundation) to identify, discuss and build pathways for implementation of compassionate allowance drug access to children and adults with rare diseases.

The Society strengthened its alliance with global MPS organizations. Terri Klein was nominated to the board of directors as the first co-chair for the IMPSN, a global MPS collaborative tasked with fostering underserved countries and gaining key knowledge and insight to expand opportunities for multi-center clinical trials.

Once again the Society was recognized as a national leader among charities. For the eighth year, we received the coveted Four-Star (exceptional) rating from Charity Navigator, an independent charity evaluator, indicating that we operate and perform in the most fiscally responsible way. We are in the top 3% of charities nationwide, outperforming most in the United States. This rating illustrates our dedication to program funding. This past year, we awarded one of the highest levels of research program funding and enhanced our internal family support programs with the continuation of our Pathways program and the addition of our Bereavement Expense program.

As you review the 2018 Annual Report, we hope you note the accomplishments from our board of directors and committees. We can only deliver our mission because of the countless hours our volunteers provide to help our families.

As we transition to the new year, we expect 2019 to be a year of continued growth for the Society with a strong foothold in the global MPS and ML community. The world has focused on the United States, by fostering key MPS clinical trials, leading the world in newborn screening for rare diseases and mentoring underserved countries through educating MPS families via humanitarian programs. The future possibilities are limitless!

LISA P. TODD, chairman, board of directorsTERRI L. KLEIN, president and CEO

Governance CommitteeTHE GOVERNANCE COMMITTEE plays a crucial role in the National MPS Society’s overall guidance and direction by reviewing staff and board member resources, identifying gaps in service delivery, and working to improve overall performance. This is accomplished through several key initiatives, such as annual compensation and benefit evaluation, board member reviews and board election oversight.

This year began with a full review of staff compensation and benefits, resulting in modifying the structure of the staff’s benefit plans to ensure the Society remains a competitive employer.

The committee also determined that board members could benefit from coaching and training to assist in achieving their goals, as well as holding them accountable for their performance.

To obtain this feedback, board members completed an evaluation of the board as a whole, a self-assessment review of their own performance and separate anonymous evaluations for each of their peer board members. This evaluation process provided each board member an opportunity to communicate objectively and openly discuss strengths and weaknesses, ensuring alignment with the Society’s identity, mission, values and goals.

Our 2018 annual board election process was completed in late fall. Prior to the member voting process, the committee completed a vigorous vetting process of all applicants to identify a selection of high-quality candidates. With great excitement, the board welcomed three amazing new members with terms beginning in 2019: Sheri Wise, Shelby Lyon and Cristol Barrett O’Loughlin.

2018 INTERNATIONAL MPS NETWORK MEETING, SAN DIEGO, CA

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This is my second stint on the Society’s board of directors, the first one in the early 2000s. There has been one constant that I have observed: the can-do attitude of the board of directors. It is the hallmark of the National MPS Society. They go the extra mile, and then the mile after that. The board, acting together with our wonderful staff, have had a huge impact on the families we serve.

Through our fundraising efforts and with big hearts, we achieve our mission. The Society has kept its attention focused on what matters most—the members who are affected by MPS and ML. We are a patient-centered organization that funds critical research through global collaboration. The Society maintains a strong foothold in the MPS arena, both here in the United States and internationally.

LARRY KIRCH, National MPS Society board of directors, MPS IIIA parent

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Family Support CommitteeSUPPORTING OUR FAMILIES strengthens our community and fulfills our mission. Through a variety of programs, the National MPS Society assists families and individuals throughout their journeys and enables them to reach goals, meet needs and participate in life-enriching programs.

The Bereavement Expense Program started in response to an unmet need of limited financial resources available to families experiencing the loss of a loved one from MPS or ML. This program began in 2018, providing grants to families to assist with funeral costs or other final expenses.

Working on a global level, family support included new and increased partnerships between countries. The Society’s expanded reach provided access to humanitarian programs for approved treatments and established connections for referral. At our families’ request, the Society implemented strategies and assistance to provide direct tissue donation to researchers. Utilizing third-party, nonprofit sources, tissue donation fostered international research opportunities.

With a grant from the National MPS Society’s Family Assistance Program, Jett received a pair of hearing aids. These will help him to socialize, work and communicate, and enable him to stay connected to the outside world.

CLAIRE TRAPPE, mother of Jett (MPS I)

Family Assistance Program• Approved six applications, totaling $15,491. • Items funded included hearing aids, wheelchair lifts,

vehicle valet seat and eyeglasses.

Medical Travel Assistance Program• Approved 23 applications, totaling $11,527. • Combined travel and lodging to increase eligibility to

$750 per applicant.

Journey Assistance Program• Approved three applications, totaling $783. • Funds awarded assisted families in obtaining an iPad,

home pest control, and a chair for home infusions and treatments.

Bereavement Expense Program• Approved nine applications, totaling $4,500. • New program for 2018, providing assistance with final

expenses for an individual with MPS or ML.

Investments of nearly $120,000 provided support to families in 2018 through the following programs and initiatives:

Conference Scholarships• Awarded scholarships to assist 41 families and

adults with MPS and ML to attend the International Symposium, totaling $41,576.

Continuing Education Scholarship Program• Awarded 30 scholarships to students, totaling

$37,500. • Awarded two Jeffrey Bardsley Scholarships to

individuals with MPS, totaling $10,000. • Implemented a lifetime cap on the CED program of

$4,000 to increase availability of these scholarships to new applicants (not applicable to the Jeffrey Bardsley Scholarship award).

Extraordinary Experiences Program • Awarded four grants, totaling $3,777. • Grants awarded to assist three individuals with MPS

to attend educational conferences outside of the International Symposium and for an individual to attend a unique football event experience.

Regional Social Events • Provided funding to support events in Ohio, Illinois

and Texas, totaling $2,035.

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• Submitted position statements on the following:

1. Opposition letter for the “Right to Try Act”—legislation did not include primary barriers to treatment access outside of the clinical trial design and removed the Food and Drug Administration approval and consultation.

2. Open letter for the Partnership to Improve Patient Care to inform CVS Caremark that the United States has considered and rejected any unacceptable discrimination against patients with disabilities. It is recommended that CVS Caremark not use incremental cost-effectiveness ratio measures for treatment.

• Increased newborn screening awareness opportunities with collaborations led by EveryLife Foundation and patient advocacy within individual states.

Advocacy CommitteeADVOCACY IS ONE OF THE BEST WAYS for our rare disease community to share its stories with lawmakers and policy influencers, who are empowered to make a real difference on a federal level. Federal policies can increase life-saving medical research and access to care for our MPS and ML patients.

The Advocacy Committee focuses on a number of goals throughout the year, including regular calls to action on rare disease legislation, disseminating carefully crafted appropriations language to spread our message to new members, collaborating with the rare disease community as a whole, conducting advocacy training webinars and growing and fostering relationships with key decision makers.

In 2018, the Advocacy Committee:

• Facilitated Capitol Hill visits with 44 advocates meeting with 51 legislators over two days to advocate for the OPEN Act and increased NIH funding for MPS and ML diseases.

• Provided onsite training in Washington, DC, for our Speaker’s Bureau Program.

• Hosted four 30-minute advocacy training webinars: MPS Advocacy: Preparation for Meeting with Your Legislator; How to Tell Your Personal Story; Letters to the Editor and Social Media Advocacy; and Finding, Meeting and Cultivating a Relationship with Your Lawmaker. These webinars can be accessed on our website for continuous training.

• Created membership and public awareness action alerts to support the following: Medicaid formulary access for rare disease patients; the Lifespan Respite Care Program; the National Family Caregiver Support Program; and the RARE Act of 2018.

• Attended the following advocacy and networking conferences: 14th Annual WORLD Symposium; COPA; NORD Rare Awards Gala; EveryLife Congress on newborn screening; Global Genes 2018 RARE Patient Advocacy Summit; NORD Patient Summit.

As I reflect on the important tasks the Advocacy Committee was challenged with in 2018, I realize that our goals are common ones shared across the globe. We meet with Congress to continually remind them that our loved ones with MPS and ML need their help. Educating our government is key for continued financial and healthcare support, as well as for funding as new science emerges. In 2018, the Advocacy Committee continued to advocate for NIH and FDA funding, for newborn screening, and for bills that could result in more treatments and cures for MPS and ML—the ultimate goal for all families everywhere.

MARY CAVANAGH, mother of Scott (MPS IVA)

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NORTH CAROLINA NEWBORN SCREENING APPROVAL MEETING

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Education and Publicity CommitteeTHE NATIONAL MPS SOCIETY CONNECTS AND ENGAGES with the MPS and ML communities through education and publicity efforts. Through social media, educational materials, and printed publications and promotional materials, the Education and Publicity Committee actively seeks new and innovative ways to involve our members and increase public awareness.

In 2018, the National MPS Society hired a communications director to expand committee reach through increased social media, updated educational materials and enhanced email marketing efforts. The Education and Publicity Committee focused on global community awareness as it helped the Society prepare for the 15th International Symposium on MPS and Related Diseases.

In 2018, the Education and Publicity Committee:

• Increased efforts to raise awareness for International MPS Awareness Day, May 15.

• Increased e-Courage subscriptions to more than 1,700 members. e-Courage is a monthly electronic newsletter.

• Implemented the return of the printed Courage publication. Distribution of the publication resumed in December.

• Updated the National MPS Society brochure and e-Courage online newsletter.

• Began a comprehensive revision of the fact sheet library for the MPS and ML community.

• Developed a full marketing plan to provide publicity for the Society on important initiatives including: advocacy visits, newborn screening and the 15th International MPS Symposium for MPS and Related Diseases.

• Created new strategies and restructured the committee. Our new Education and Publicity Committee is comprised of four sub-committees: Content Development, Design Development, MPS Awareness Day and Strategic Planning. This was done to develop a more meaningful delivery of key communications.

WHITECOTTON FAMILY (MPS II)

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Join us on May 18, 2019

THE MANSION ON O STREET

2020 O ST NW, WASHINGTON, DC 20036

6:00–11:00 PM

Dare to be Different

NATIONAL MPS SOCIETY CELEBRATES

NATIONAL MPS SOCIETY | DECEMBER 2018

MPS PATHWAYSThis essential program provides support and resources to families whose children are newly diagnosed.

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FUNDRAISING MILESTONESTireless efforts of Society members and supporters continue to raise record-breaking funds to support our mission.

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RESEARCHThe Society will fund $550,500 in research grants to find cures and develop therapies.

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COURAGE

The International MPS Network is a global collaborative of patient advocacy groups that support the well-being of those affected by MPS and related diseases, and promotes public and professional awareness worldwide. As a united voice, the International MPS Network can play a significant role in patient advocacy to advance research, treatments, diagnostics and patient care.

In 2018, The International MPS Network took a bold step by electing a board of directors to move the mission and mandate of the International MPS Network forward.

The Canadian MPS Society is proud to join efforts with our global partners, including the National MPS Society, to develop clear pathways for sharing information and best practices and enhancing our global communications to further our mission. Together, we are stronger.

KIM ANGEL, executive director, Canadian MPS Society

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Adult Resource CommitteeWITH AN INCREASING NUMBER of individuals with MPS and ML living into adulthood, the Adult Resource Committee (ARC) developed to focus on unique issues among this population. The ARC provides a way for adults with MPS and ML to have a voice within the National MPS Society and encourages the efforts of physicians, families and friends to provide support.

Though it is a recent endeavor, the ARC has developed a solid groundwork for increased advocacy and efforts by individuals with MPS and ML, both within the ARC and the Society as a whole. Increased involvement remains a critical objective in setting goals for the upcoming year. The ARC provides an opportunity for adults to voice individual and collective needs, transition to increased independence and develop strategies for communicating with external supports.

AUCTIONING QUILT FOR ARC PROGRAMS: JENNIFER KLEIN (ML III), SHERI WISE (MPS IVA), JASON MADISON (MPS II), ERICA THIEL (MPS I), AND TERRI KLEIN

JEREMY GATTA (ML III)

JOCELYN WONG (MPS IVA)

KENDRA GOTTSLEBEN (MPS VI)

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2018 ARC highlights:

• Completion of a “Road Kit” that provides information and resources for adults and those transitioning into adulthood. Distribution of Road Kits will begin in 2019.

• Worked with adults on a global level to host sessions, panel discussions and breakout events at the 15th International Symposium on MPS and Related Diseases.

• Increased planning and coordination of upcoming efforts to drive awareness and advocacy relevant to needs of the adult population.

• Developed adult-specific informational materials and provided content for updates of other Society literature.

TRACY MARIE GREENBERG (MPS IVA)

SELECTED MEMBERS

Pathways CommitteeTHE NATIONAL MPS SOCIETY’S LONG-TERM VISION includes expanding ways to provide direct services to families in need throughout their journey with MPS or ML. The Society maintains this forward-thinking approach by providing services of skilled social workers who travel the country to meet with newly diagnosed families.

Meeting families and offering assistance at critical times enables the Society to expand its reach into other areas of support. In 2018, the Pathways program completed its first full year of operation, with two staff members and more than 80 families enrolled in the program.

Pathways provides a high level of support and education to families and individuals throughout the first year of diagnosis. Home visits maximize the opportunity to connect and provide meaningful, compassionate and direct lines of support. The Pathways team links families with local and national services, working to ensure they receive high quality care. Families are provided tools to equip and strengthen them to manage care and establish resources as they move forward on their MPS journey.

In 2018, Pathways:

• Provided services to 84 families in their first year of diagnosis.

• Conducted 42 face-to-face visits with families in their homes or at the hospital.

• Completed year-long services with 43 families.

• Averaged three to four newly diagnosed family referrals to the program each month.

• Developed program management materials and tools.

• Implemented program surveys to evaluate progress and understand unmet needs of newly diagnosed families.

• Completed visits in 29 states.

• Generated new materials and created a new branding logo to represent the program.

JEREMIAH (MPS I), MARINA MORENO AND COREEN GRAY

As a newly diagnosed family, we were so heartbroken and lost at the beginning. It was such a blessing to receive support, information and encouragement from the Pathways program, as well as connect with the National MPS Society. Finding community and support through Pathways was and is such a huge help for us, and we now refer and share Pathways with other families across the country. To know that we’re not alone through this difficult journey has equipped and educated us, and it makes it a little less overwhelming.

LINDA HEARD, mother of Faith (MPS I)

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Research GrantsRESEARCH REMAINS PARAMOUNT to the National MPS Society’s mission: to find cures for MPS and ML. Grant funding, research partners, and collaboration ensure key efforts toward a better future for all affected.

For decades, the Society has been funding research projects that directly advance our mission to find cures for MPS and ML. In 2018, the Society’s research program allocated one of the highest levels of funding for life-saving and life-changing research.

The National MPS Society allocated and invested more than $550,000 in total grant funding in 2018, which includes second-year funding for grants awarded in 2017, and $100,000 in partnership with the University of Pennsylvania through the Million Dollar Bike Ride. The Society also committed $25,000 to the University of Minnesota, Lysosomal Disease Network for continued Core Imaging Research with the NIH. The funding the Society provides has been, and continues to be, critical as we move forward with our mission to find cures.

We received 32 letters of intent from researchers around the world this past year. After reviewing the letters, our Scientific Advisory Board review committee requested full grant proposals from 16 researchers. Projects selected include research for syndromes in desperate need of funding. Sanfilippo research received $320,000 and Mucolipidosis received $90,000. Other projects include substrate degradation enzyme therapy for MPS IVA and critical safety studies for MPS I corneal gene therapy.

2018 INTERNATIONAL SYMPOSIUM ON MPS AND RELATED DISEASES: MARK HASKINS, VMD, PHD, AND PATRICIA DICKSON, MD

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As researchers, we usually tell the stories of our work, whether to the community or through publications, as focused narratives that make the positive results seem self-evident, foregone conclusions. What we don’t convey often enough is the trepidation we feel about sustaining our research projects, our careers and our focus on rare diseases. Over the years, the National MPS Society has been a lynch pin that has ensured that careers and research focused on MPS diseases were viable and sustainable. Now more than ever, the research community needs the resources and leadership of the Society so we can continue to make progress for MPS patients and families.

MATTHEW ELLINWOOD, DVM, PhD, chairman, 2019 Scientific Advisory Board

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2018 Two-Year Grant Award Recipients Dr. Heather Flanagan-Steet $90,000 general grant Greenwood Genetic Center Greenwood, SC “Cysteine Cathespins as Therapeutic Targets in Mucolipidosis II”

Dr. Kim Hemsley $90,000 general grantSAHMRIAdelaide, Australia “A Window to the Sanfillipo Brain: Visualizing Experience-Dependent Plasticity in MPS IIIA Mice”

Dr. Kazuki Sawamoto $75,000 MPS IV grant Nemours Biomedical Research Alfred I. duPont HospitalWilmington, DE“Substrate Degradation Enzyme Therapy for MPS IVA”

This innovative research could not be accomplished without the selfless commitment of our global MPS scientists. Our commitment and dedication to advancing our mission through these partnerships is highlighted in these carefully chosen and pivotal research projects:

Dr. Laura Hewson $60,000 MPS III grantUniversity of AustraliaAdelaide, Australia “Purine Metabolic Enzymes as Therapeutic Targets in Sanfilippo Syndrome” 2018 One-Year Grant Award RecipientsDr. Timothy Wood $30,000 MPS I grantGreenwood Genetic CenterGreenwood, SC “Functional Analyses of IDUA Sequence Variants – MPS I”

Dr. Brian Gilger $30,000 MPS I grant NC State University Raleigh, NC “Safety Studies for Corneal AAV-IDUA Gene Therapy to Reverse Corneal Blindness in MPS I”

Lysosomal Disease Network $25,000 multi-syndrome grantUniversity of MinnesotaNeuroimaging Core NIH Project

2017 Second-Year Grant Award Funding Dr. Allison Bradbury $15,000 Mucolipidosis grantUniversity of PennsylvaniaPhiladelphia, PA“AAV Gene Therapy in a Feline”

Dr. Charbel Moussa $67,500 MPS III A grantGeorgetown UniversityWashington, DC“The Effects of Tyrosine Kinase Inhibition on MPS IIIA Mice”

Dr. Chet Whitley $35,000 MPS IVA grantRegents of the University of MinnesotaMinneapolis, MN“Neurocognitive and Neuroimaging of Morquio Syndrome”

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NUMBER OF RESEARCH GRANTS ISSUED SINCE 2001

NUMBER OF GRANTS

MPS I

MPS II

MPS III

MPS IV

MPS VI

MPS VII

ML

General Research

RESE

ARCH

GRA

NT T

YPE

5 15 2510 20 30

15th INTERNATIONAL SYMPOSIUM ON MPS AND RELATED DISEASES

The scientific program provided an overlay of the following topics: disease pathophysiology, diagnostics and biomarkers, clinical research and trials, and preclinical therapy developments. Through global abstract submissions, the organizing committee ensured new scientific discoveries and ground-breaking research would be revealed. Eighty-eight scientific posters were selected and presented over two days. It was an opportunity to witness scientific success and remain awestruck at their achievements.

The family program was held in tandem over the next three days and included the following key topics: 21st Century ecosystems and scientific challenges; cardiac and bone management; newborn screening; neurobehavioral symptoms in clinical trials; rare disease drug development; gene therapies and second generation therapies; combination therapeutic approaches; pediatric to adult transitioning. Preceding the family conference, a full-day meeting was held on Sanfilippo Syndrome, emphasizing efforts for diseases that do not have an approved therapy.

The symposium drew more than 50 adults with MPS and related diseases from around the world to San Diego. Adult keynote speakers opened the symposium using hope as a theme among the attendees. A boat tour and meet-up provided the adults with multiple opportunities for networking and exploring the beautiful western coastline of the United States.

“When a number of researchers and key stakeholders asked us to host the International Symposium again, I realized the National MPS Society succeeded at

delivering one of the most successful events,” said Terri Klein, president and CEO, National MPS Society. “We are proud that this inspirational platform allowed attendees to picture a future where newborns are screened for MPS and related diseases and clinical trials and therapies exist for parents to save their children.”

LAST SUMMER, THE NATIONAL MPS SOCIETY HOSTED the 15th International Symposium for MPS and Related Diseases in San Diego, CA. This biannual meeting provides the sole opportunity to formally bring together all key stakeholders of the international MPS and ML community. The 2018 symposium was the largest attended event in its history, with more than 1,000 patients, families, researchers, physicians, industry partners and volunteers. In tandem, the symposium provided both a scientific and family conference.

Our field has seen a tremendous transformation over the past three decades. Ask an old timer to tell you what it was like at the beginning, before enzyme therapy and bone marrow transplantation changed the face of some forms of MPS. It has not been easy, and we have lost many along the way. But, we’ve also watched children never expected to reach adulthood do just that. Now, with an enzyme therapy and cell transplantation to gene therapy and gene editing, it seems as though we are again on the edge of a new frontier.

PATRICIA DICKSON, MD, Symposium Scientific program chairman

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15th INTERNATIONAL SYMPOSIUM ON MPS AND RELATED DISEASES

When my daughter was diagnosed with MPS IV in 2006 at 4 months old, it seemed the wheels of research were at a crawl. But that changed and the pace continues to increase year after year. It is awe-inspiring to witness more than 13 years of basic research translating into treatments and potential cures for MPS and ML. This investment in our future started more than 44 years ago, when a small group of parents came together initially to just support one another, which led to a focus on seeding promising research and advocating at the federal level for NIH grants. Though progress moved slowly in the beginning and for many years, the last 10 years has been beyond my expectations. My dreams for what can be accomplished have grown exponentially. I feel blessed to be just a small part of the process through advocating and fundraising with the National MPS Society, an organization that has a history built on hope turned into action and realized clinical trials and therapies.

Passion to push beyond expectations will help us achieve all that still needs to be done. Chairing the 15th International Symposium on MPS and Related Diseases in the United States was an honor. We were able to bring together global collaboration and research, all while being transparent and serving our patients and their families. Keep faith, keep striving, keep dreaming and creating. It is more than possible to change the course of this disease. We created new pathways at the symposium. It has been a blessing (in disguise!) and a life-changing experience, to be a part of this community. But I have also had to watch the reality of so much loss. My perspective has changed and I cherish all the memories of those we have lost. Our MPS angels fuel the urgency and passion to keep moving forward to create global change and provide treatment access to every baby diagnosed with MPS. Forty-four years is a lifetime, but science has changed how we will tackle the decades to come. The Society will be front and center collaborating and creating necessary change to save lives.

STEPHANIE BOZARTH, symposium chairman, MPS IV mother

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Fundraising CommitteeTHE TRUE MEASURE OF SUCCESS for any nonprofit organization is the level of support it receives from its members and benefactors. Through increasing generosity and commitment, donors and benefactors of the Society drive growth and expansion of programs and outreach each year. In 2018, the Society hosted major national events in San Diego, CA, Napa, CA, San Antonio, TX, Babylon, NY, and several other cities. In addition, the Society teamed up for the fifth year in a row with the Million Dollar Bike Ride at the University of Pennsylvania to raise more than $100,000.

The Fundraising Committee supports the mission of the Society through many programs, such as family fundraisers, walk/runs, the Annual Fund, major gifts, planned giving, mobile giving, Courage Pages, our Champions Circle, crowd rising fundraisers, social media campaigns, the Combined Federal Campaign, United Way, employee giving, and matching corporate gifts and grants. The Fundraising Committee strives to increase donations each year and looks forward to the opportunities in 2019.

In 2018, the Fundraising Committee:

• Received its eighth four-star charity rating from Charity Navigator, representing sound fiscal management and commitment to accountability and transparency. This “exceptional” designation differentiates the Society from its peers and demonstrates to the public it is worthy of their trust.

• Supported an active membership roster of more than 2,975 members.

• Raised more than $530,000 through run/walk and fundraising events.

• Secured more than $100,000 for MPS and ML research from the University of Pennsylvania through the Million Dollar Bike Ride.

• Hosted three national run/walk events in Napa, CA, San Diego, CA, and San Antonio, TX.

• Supported more than 30 family fundraisers, including sports tournaments, cycling, bake sales, bowl-a-thons, concerts, bingo, auctions and school relays.

• Increased grant writing efforts to secure new sources of funding for critical research, family support, and our newest programs: Pathways and the Speakers Bureau.

• Raised $203,359 through the 2018 Annual Fund campaign, chaired by Steve, Amy, Maddie and Laynie Holland.

• Continued efforts to meet with major donors and Society friends.

• Received Combined Federal Campaign application approval.

• Hosted 54 Courage Pages (customized, informative family web pages for awareness and fundraising) on the Society’s website.

• Worked with donors to process more than 250 Employee Giving Campaign and corporate matching gifts.

• Increased awareness for the Rising Sun Legacy Circle and processed new planned gifts from trusts and wills.

• Established the Jenna Marie Richbourg Endowment with funds raised through Rise Up for MPS in Waco, TX.

POST OFFICE CAFÉ RUN: MARK LESSING (MPS IIIA FATHER)

RISE UP FOR MPS: KEITH AND SHERRI RICHBOURG (MPS I PARENTS)

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2018 Fundraising Events36th Masonic District of Pennsylvania Fundraiser, hosted by Josh NayAdam Podesky Fundraiser, hosted by National Jr. Honors Society Joseph Case Jr. High SchoolAnniversary Celebration, in honor of Mel and Millie AnhaltAnniversary Celebration, in honor of Jonathan Cino and Shirley and Peter CinoAnnual Family Support Program Fundraiser, hosted by Junior Woman’s Club of Hilton Village, Inc.Cooper’s Troopers BBQ, hosted by Christine TippettDo it Fore Dan Golf Tournament, hosted by Ray and Amy MillerDave Pizzaworks Fundraiser, hosted by Keith and Sherri RichbourgFundraiser in Honor of Ava Kreme, hosted by Fort Recovery SchoolsHalk Family Fundraiser, hosted by Carla Halk CrainHolland Caring & Sharing Event, hosted by Steve and Amy Holland

Rise Up for MPS, hosted by Keith and Sherri RichbourgSarah Van Orden 21st Birthday Fundraiser, hosted by Sarah Van OrdenToss for Tony Washer Tournament, hosted by Katie WillmannTraveling Through Memories, hosted by Michelle DodsonVirginia Charity Tennis Tournament, in honor of Annabelle BozarthVolleyball Tournament, hosted by Molly Birmingham

2018 Walk/Run EventsAlamo Battle for MPS 5k Run & Memorial Walk, hosted by National MPS SocietyNapa National Run, hosted by National MPS SocietySan Diego National Run, hosted by National MPS SocietyPosted Office Café Run, hosted by Mark Lessing

Hopkins 9th Annual CAbi Clothing Party, hosted by Lynn HopkinsHouston Kendra Scott Fundraiser, hosted by Trisha JensenJohn Thornton’s 16th Birthday Fundraiser, hosted by Sheila ThorntonKarina’s Birthday Fundraiser, hosted by Luis and Angela GuajardoKendra Scott Fashion Island, hosted by Lynn HopkinsKramer Chili Cookoff, hosted by Elizabeth KramerKlenke Bowl-a-Thon, hosted by Kris KlenkeMask Concert for a Cure, hosted by Dorothy Mask Million Dollar Bike Ride, hosted by Penn Medicine Orphan Disease CenterMPS III Fundraiser in Memory of Ryan Mask, hosted by St. Paul’s United ChurchMrs. Radcliff’s 3rd Grade Class Mini Mall for Taylor Wojnarowski, hosted by Lisa RadcliffPig Roast, hosted by Knights of Pennsylvania, RC

Evan AbelAshley AllenAaron AthyHunter BeamRyder BelisleColin BerningKeller BlakeleyAnnabelle BozarthTyson BrownSam CaswellAlan CharestAlex and Nick CherrstromJackson Dunn-KrausJulia Ann DonahueAntonio Estrada WillmannKali GegenheimerShane GibsonOwen Groesch

Courage Pages at www.mpssociety.orgThe following families have their own website through Courage Pages at the National MPS Society. Whether hosting an event or raising awareness for MPS or ML, these custom pages are an effective way to reach donors and help enhance fundraising efforts, with no expense. These inspirational sites can be found under the “Give” section of the Society’s home page.

Karina GuajardoFaith HeardMakenzie and Isabella HardestyHolland familyMichelle HopkinsAnalynn HughesFiona HumphreyKathleen JoyceCarter KanneyBeth KarasEddie KimminauAllison KirchJennifer KleinKraig KlenkeDrake LucasShane McGoeyCaleb MichalikDanny Miller

Maura MonganXavier PattonAnalee PerezRaymond PinchakHudson RomanChristopher SanchezElijah StoryKatie SwansonMadison ThompsonCooper TippettJack ToddEaston WalkerTrinity WalkerMichael Whitaker RussellScotty WhitecottonChristian YardEmily YurkinsRoy Zeighami

ALAMO BATTLE FOR MPS 5K

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Fundraising, continued

Lee Ann AdamsDwaa AlBob AllenMitch AndreottaBetty ArceneauxEmma ArmatoRon AtkinsonFrancie BarbellaAleta BartAmanda BayneMaurizio BellassiOfeslia BeltrainKatie BennettJerry BennettNicole BennettDarryl BlockGeri BoneskeJason BoniDawn BoosterRose BougeoisAustin BozarthStephanie BozarthJefferey BrownLiz BrownRachel BurnsMariah CampagnaMatthew David CampbellAdriana CaraballoCarla Halk CrainElyse CataldiAnthony CatanzariteLaura CatanzariteOlivia CecereJennifer Nicole ChambersJamie Tarquin ChapmanAndrew CharestRuth ClancyTela ClancyVicki ClaytonMelissa ClerouxAlayna CoatesAllison CochranIyona CookJodie CostelloAshley CristJason CullereKaren CutrerKeena DavisNancy Davis-RamseyLoren DeSouzaSue Miller DeusterAddrea DownsJull DuclosLeslie DuncanTamiko DunsonMark DunsonMeghan Eaton

Jennifer Lee EickmanWayne EppenhimerAmanda FernAshley Ann FortheringhamAshley FrixElizabeth FryJerod FultsMarcia GalanKali GegenheimerTracey GegenheimerA.J. GegenheimerLola GindrattMiranda Giselle CesmegiKaelin GontaineCassidy GoseyKendra GottslenbenJessica GranthamDewayne GreenMonica GreenRebecca GreenAndrea Gribble HollimanCat GriffithMegan Griffith Brenda HaggettBethany HamptonJennifer HardyBrittney HartlineKim HarveyLaura HarveyTaylor HarveyRhonda Hathcoat BaughJessie HaugenAndrew HayesLinda Stephany HeardPaul HeardKimberly Heichel ForandKimberly HeilingJennifer HembreeJohn HennebryAshley HillsMelissa HockenberryLynn HopkinsEddie HopwoodJennifer HowardMelissa Hurt-CrawfordNadia Hussain-AtifBridget HysellAndrea JacksonLauren JacobJessie JamesDeanne JamesDana James StapleyAlyssa JeanneJustine JohnsonEmily JohnsonSamantha Kali KeenanTammy Kassa

Brenna KingTerri KleinWillis KleinianZach KramerMary Ann KruseSusan Elizabeth LadewigTiffany Strickland LalaHeather LeeMatthew LemkeMichael LewisMorgan LewisWilliam LewisMary Katherine Livingston Zach LongstonLissette Lopez-SanchezPaul LorberCourtney LynnJamie LynnKari LynneWill MalliaLucas MarcotteTatum Marie KnightLinda Martin Stephen MaskShannan Rene MayTrisha Anne McClellandJessyca Rene McCrackenAnna MedelesAlesix Nicole MeyersKorin MiluckyMaria Elizabeth MirandaPiper Dotty MitchellAmber MonganLillyana MorrisonVictoria MortensenKathryn MurphyAysia NguyenStyron NicholeUrsula NicoleRoslynn Ofuitt GarvinDeb OlsenKatie OrrRobert OstwaltVangie ParAmanda PetersenStacey PelverAngelica PraterSavannah PrinceMason PropstAmanda Sears QuesenberryMichaela QuinnSteve RadiusEvee RamirezTraci RamirezPenny Rawlinson Cole

Bonnie RennankerJoyce Rhodes-BarrettGretchen RigginCarmen RodriguezDarling RomeroEmma RotchellDenis Roubion-JohnsonKatie RoyerErica RuizMarla SailorShawn SamuelsonLissette SanchezSara SedamTravis SevillaShaina Runs For MatthewChristina ShaughnessyElizabeth Stanton SibertKatie SimmondsJulien Tom SimoJulie SimpsonNiki Dale SimpsonMelissa SkeltonTessa SkeltonShantrice StanleyDana StapleyDianne Stefanic WilliamsHeather StephensPaige Stolberg

Lynda Sweeney JondleKarolina SzarejkoMatt ThompsonBrian TippettDannette TooleMaria Garcia TuckettCihan TurJennifer UnderwoodLeslie UrdanetaEvelyn Valentine Kim VangMelissa VervilleCecille VincentEileen WalshSusie WalshMiranda WalshLester WaltersJudy Ward PatrickJulia WhalenKim WhitecottonWendy WhittAugusta WickmanTara WilliamsSarah WilliamsAmanda WishonLaura WorkmanSusan WorkmanPat YoungJodi Zukasky-Andino

2018 Social Media Fundraisers

Members of the MPS Champions Circle generously support the Society by making a monthly recurring donation. 2018 Champions CircleAmy BarkleyMelany BjorkmanToni BowenMarc and Beth BrdarMaria De GranilloJustin DickersonLola GindratHeiz Holba and Karina RomanSteve and Amy HollandJennifer HutchesonBryan KirchLori LazarescuLauren LouisonDonny and Molly MerrillGreg and Jennifer MincksEric and Amber MonganSusan MurphyReverend Ted and Kathy NaceJulie PatriciaLinda PerrellaJared SheltonJack SwepstonSarah and Todd WaddellChristi WadleCurt Walder

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FinancialsThe financial information below has been summarized for the year 2018. The National MPS Society is a 501(c)(3) nonprofit public charity. Complete audited financial statements and IRS Form 990 are available by request and on our website.

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Support and RevenueContributions General $ 228,889 Research 113,848 Family support 15,038 Endowment 59,186Membership dues 3,323Conference income 723,922Fundraising 675,507Interest and dividends 121,030Net realized and unrealized loss (223,266) on investmentsTotal Support and Revenue $ 1,717,477

Functional ExpensesResearch grants $ 342,206Direct family assistance and bereavement 80,145Advocacy and speakers bureau 39,731Conferences, meetings and travel 951,497Education—newsletters, booklets, web 115,550Membership database and directory 10,855Direct fundraising 93,349Personnel 470,581Office and equipment 54,261Other administrative 83,523

Total Functional Expenses $ 2,241,698

Change in Net Assets $ (524,221)

Statement of Activities

Assets

Cash and cash equivalents $ 443,245Contributions receivable 70,500Prepaid expenses 2,216Accrued interest 4,861Property and equipment, net 10,267Investments with donor restriction 1,097,988 for endowmentInvestments without donor restriction 2,125,254Total Assets $ 3,754,331

LiabilitiesAccounts payable $ 18,963

Net AssetsWithout donor restriction Undesignated 1,447,995 Designated 289,179With donor restrictions 1,998,194Total Net Assets 3,735,368

Total Liabilities and Net Assets $ 3,754,331

Financial Position

2018 Support and Revenue

Contributions–general

Contributions–research

Contributions–family support

Contributions–endowment

Membership dues

Conference income

Fundraising

Interest and dividends

Net realized and unrealized loss on investments

2018 Functional Expenses

Research grantsDirect family assistance and bereavement

Advocacy and speakers bureau

Conferences, meetings and travel

Education–newsletters, booklets, web

Membership database and directory

Direct fundraising

Personnel

Office and equipment

Other administrative

Planned Giving helps donors maximize the personal benefits of charitable giving and allows donors to make gifts they may not have thought possible. Individuals who make these gifts to the National MPS Society, whether through their estates, wills or other life-income arrangements, share a strong common bond of generosity that will provide security for future generations. Building this community of philanthropy helps our donors achieve their personal vision and desire to give.

In 2018, the Society’s Planned Giving initiative:

• Secured a large stock gift.

• Included Planned Giving articles in Courage publications.

• Continued stewardship with donors.

• Acknowledged two future gifts to the Society.

• Maintained a Planned Giving website to help members and friends of the Society become acquainted with Planned Giving and gifts the Society accepts.

Rising Sun Legacy Circle

Annual Fund Donations The National MPS Society has been an integral partner in caring for Spencer, Madison and Laynie on our journey with MPS. We are elated that sharing our family’s story of reliance on the Society helped propel the Annual Fund to a historic new high, even surpassing our $200,000 stretch goal!

AMY AND STEVE HOLLAND, MPS I parents

“

* Indicates gift has been received. Some members wish to remain anonymous.

Emil Kakkis and Jenny Soriano*, 2011Becky Clarke, 2011Christa Armstrong*, 2011Mary Starr Adams, 2012Terri Klein, 2012Tracy Szemanski, 2012Barbara Wedehase, 2013 Brian and Kris Klenke, 2013Steve and Amy Holland, 2013 Carol Elwell*, 2014Steve McDonnell*, 2014Randy McDonnell*, 2014Austin and Stephanie Bozarth, 2014Ron and Barbara Crecco*, 2015Cheryl Sorter*, 2015Pamela M. Daoust*, 2016Gordon R. Case Trust*, 2017

$200,000

$150,000

$100,000

$50,000

0201520132011 2017 20182010 201620142012

2018 WAS THE EIGHTH YEAR for Planned Giving with the National MPS Society. By year’s end, 29 Planned Giving donors became part of the Rising Sun Legacy Circle.

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17

2018 Contributors with sincere thanks to our supporters…In 2018, the National MPS Society was able to provide support to families and funding for research because of the generosity of the following individuals, families, foundations, companies, groups and fundraising events. The board of directors and the Fundraising Committee thank you for your dedication.

The Society makes every effort to recognize our supporters through e-Courage and this Annual Report. The following list represents all donations received in calendar year 2018. If your name is not listed, we apologize and ask that you contact us. If we received your donation in 2019, you will be recognized in the next Annual Report.

Humanitarian ($50,000+)Genzyme CorporationREGENXBIO, Inc.Shire Global FinanceShire Human Genetic Therapies Streblow FoundationUltragenyx Pharmaceutical

Visionary ($10,000 to $49,999)AssetMark, Inc.Wayne and Catherine BardsleyBioMarinMarsha and Robert BozarthBryson Foundation, Ltd.Royce Bunce and Elizabeth SherwoodChiesi Farmaceutici SPAPamela DaoustDiplomatic Specialty Infusion GroupGordon TrustScott and Lynn HopkinsHunter Syndrome FoundationMagnolia FoundationRobert and Katharyn MolinaroSangamo Therapeutics, Inc.

Philanthropist ($5,000 to $9,999)Angel’s Hands FoundationDesign SuperstoreJoseph and Jan Melnyk

Mirabito Philanthropy, Inc.Sam and Nancy RamseyJames and Pamela RogersTEGA Therapeutics, Inc. Champion ($1,000 to $4,999)Patricia AdcockHelen AllisonAmazon SmileBill and Mary AndrewsDr. Mel and Mrs. Millie AnhaltArchitectural Granite and MarbleArtisan SG, LLCJoseph and Kristina AshtonSimone AzevedoMaurizio BellassaiStephanie and Austin Bozarth Brackeen Power SolutionsBRD Management, Inc.Chris BrodmerkelRegina BuiceCA TechnologiesDwain CampRob and Diane CassilLiam and Mary CavanaghDonald and Susie ClarkLorne Clarke, MDCook Children’s Hospital Caroline DabneyPaul and Cara DavidBarbara DengelJeff and Anne DenneenJulie DopheideKathleen Dull

Nancy DunnDutch’s Daughter, Inc.Fort Recovery School DistrictBetsy and Steve FowlerGabby’s LadderGerald and Luella GabrielAngela and Luis GuajardoHarris AssociatesPamela HeschJohn and Bonnie HoeglHeinz and Karine HolbaDavid and Susan HolderSteve and Amy HollandJulie and William JohnsonJoseph Case Jr. High School National Jr. Honors Society FundKajima FoundationWendell and Karen KeithKerzner Contracting GroupMark and Dana KinslowLawrence and Susan KirchTom and Julie KirchTerri Klein and Michael SchleterElizabeth and Jayson KramerKainani and Walter KrautDoug and Heidi KreulLansdowne Lodge 711 Chris LaszeskiGerald LauriaLawrence and Peg LessingDawn LietzOlivia Lovell Family FundTad and Gayle Lowrey

Jim and Betty McDonaldSandra MillerDavid and Jamie MoonSarah and David MooreJohn NayAustin and Cheryl Noll IIIAustin and Dorothy Noll Jr.Pacific Gas and Electric Pacific Western BankMark and Maryellen PendletonSarah PursellRob RamirezJeff and Sara Jane RanneyPaul and Katie RectorHorace RichbourgThe Rusnak familyDr. George and Mrs. Athena SarantinosSchneider ElectricAdam ShaywitzSusan and John SlaterWilliam and Margaret SlyMaureen Snider Springfield Hanby Lodge 767 Sheri and Bryan SpringstonMarla and Randy StevensStrike, LLCDarlene SweeneySteven TeitelbaumThe Vocal Majority Dallas Metropolitan ChapterGlenn and Connie ThompsonLeslie ThompsonHerbert Tilsner

Julie TimmonsTimothy Schaffer Roofing and Siding, Inc.Christine and Brian TippettHugo and Marylyn Van der MoerVanguardDawn WatkinsBritney and Matthew WeidertStuart and Judy WeissSue WengHarold and Janet WhartnabyDr. Klane and Mrs. Amy WhiteTom and Kim WhitecottonGordon Wingate and Cheryl GuidryWonderful GivingArthur WoodsEric WrightTeresa and Alan WulffJim and Amy Yard

continued…

EZRA SERRANO (MPS II)

Leader ($500 to $999)36th District Masonic SchoolMary Starr AdamsMichael and Stephanee AdamsStuart and Karin AdamsW. Andrew and Lauran JackRobert and Marjorie AustinHeather and Nathaniel BarrDavid BeattyRonnie and Jaye BeckEmily BennettBiogen MA, Inc.Bruce BjorkmanSteve and Lavonne BlechingerBluestar Bioadvisors, LLCBob Utter LincolnJeffrey BridgeDennis BurkeSusan and Dennis BurkeDennis BurnsMark and Stephanie CaldwellCapitol Indemnity CorporationScott and Connie CarneyAmy and Dan CherrstromWalter and Gretchen ClaytonCoventry Corners, Inc.Karyn CroninDavid and Kathryn CrosonCarey and Mary CrumlingJasmine and Emmanuel CuffeeErin Davis

Steven and Sarah DeutserSharon and Robert DickolKathy and Paul DobrowolskiJim and Michelle DodsonJani DomireMark DorflerBetsy Drew and Ken ImagineCarrie Dunn and Melissa KrausPat and Kathy DunnStephen DunnNancy and David EdwardsCarole EllisThomas EnnisTerry EppsDavid EspositoEzze, LLCBart and Sally FinzelRod and Kathy FinzelBaxter FullertonToni and James GrahamJoseph GramblePam and Richard GrossH. Bruce Hamilton, MD, PAWallis and Monica HamptonKevin and Susan HanleyDeanna and Eldon HardyEric HargrovePaul Harmatz, MDMark Haskins, DVM, PhDRobert and Michelle HessPatricia HillKelsey HolderPeggy HollandDeborah HollisDarren HoukBeth and Jeremy HudsonBen JewellJoseph H. Brensinger SchoolDouglas and Lynn KelleyKendra Scott, LLCGeorge KennedyJoe and Ann KerchevilleHeather KesnerJenny KleinDonna KleinertKnights of Columbus, Pennsylvania, RC

Carl and Deborah KruseJoanna LamLori LazarescuChris and Anna LeatherowSusan LesterKimberly LeveauxWayne and Sharon LewisGene and Cynthia LoganDonald and Karen LoudenJeff LovelaceSalvador and Adriana MacielRachel MalloyAlice MartinCorbett and Brooke MartinDavid MassaWilliam Massa Jr.Maxsons Properties, LLCMark and Kim McCallGlenn and Kathryn McMillanMarcia MederosChris and Diane MeyerpeterWilliam and Christine MoonStefani MurrellTed and Kathy NaceSharon O’ConnellJames Olson, DDSGerard O’ReillyEffendi Ortiz-ToroJohn and Patty PaglieroThomas and Vickie PattersonDavid and Rose PeltonBrad PlantikoProject AliveAnnette and Larry PungLinda QuinlivanJohn RaidyKeith and Sherri RichbourgGregory RickRolling Meadows High School Lynn Ann SembachMahesh ShresthaDon SkeltonPenny SkeltonMike and Barbara SmithSmithsolve, LLCMarilyn and Willard Sniffin

Jack and Barbara SorterSports Gallery AuthenticatedSt. Paul’s United ChurchJudy and Karen StricklandIndependent Supply, Inc.Larry and Mary SweeneyTracy SzemanskiT & L Distributing, LPThe Dough Bar, LLCSheila and Michael ThorntonDaniel and Eleanor TobinTVA Development, Ltd.James UnderwoodSarah and Todd WaddellTanya and Gordy WahlMarvin and Michelle WandersBob WardJustin and Marie WatkinsTom and Theresa WeisenbachRon and Kim WiestJoe WilliamsLeigh WoodworthKevin and Peggy YardKelly and Patricia Young

Volunteer ($250 to $499)Jack AllenCindy and Mark AndrewsPeter and Diana ArgeresLewis and Marie BabelJoe and Susan BabicEthert and Pauline BairdJames and Mary BakerBank of AmericaAmy BarkleyDwight and Debbie BarkleyJoel and Leeann BernbaumRoss and Hilary BerningBest BuyCheryl BienJohn and Jenny BirminghamMelany BjorkmanBPO of Elks Lodge 2235Dawn Brewer-ReillyMax BurnhamMary Burns

Richard and Sue CadenaKevin CassilKenneth CavanaughCenter AcademyAmy and Corey ChristieSharon CochenourDavid CoffmanMargaret CohenJane ColletteGail Zerby CookCostcoSylvia CoulsonBob and Denise CromptonDaniel Davis, DDSLinda and Dan DayDayton GastroenterologyMaria De GranilloDelta ConstructionBenjamin DeweesWilliam and Bonnie DosterHank and Suzanne DurhamLaura EdenElizabeth and Joshua EickmanMichael ElginCarla EllardCharles and Josie EllardMargaret FerenceKevin GatesGeorge and Jaja GawartinTom and Anne GniazdowskiKendra GottslebenMichael and Susan GraffGrand Caillou Volunteer Firemen’s Home, Inc.Cassie GravesLori GrayKathleen GrossMartha GunnRobert GunstFelynn HaberechtCarol HackTammy HarderRobert and Roxanne HarveyJoanne HayoEngage Health, Inc.Mike HeidmannJulia HejdukHewlett Packard Company

2018 Contributors

SPENCER GATES (ML III)

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continued…

Christine HokehTodd and Jennifer HowardMarie HughesRichard HurleyKris JohnsonHeidi KanealyJohn KappelDaniel KehoeBob and Ginger KellSandra KempskeChristopher KenworthyAndrew and Peggy KesslerBrian and Kris KlenkeMary KruseSteven KuhlAnne KulakLynn LaceyLarmar Industries, Inc.Lori Caldwell LedouxCharles and Kendra LestaKathryn and Hai LieuGregory and Susan LockAndrea LongstonLauren LouisonChuck and Nancy LukondiDidier LuneauRae MaconLori ManeringKeith and Jennifer MarshallStephen and Marie McClurgDavid and Pam McDonaldKathleen MeyerBeverly MillerRay and Amy MillerGreg and Jennifer MincksPatricia and Scott MorrisJames MortonMichael and Amy MurrellJennifer and Ryan NaceSusan NarducciNave Newell, Inc.Harvey NelsonBenjamin and Elizabeth NeufeldNew Electric, Inc.Scott and Liz NykodymThomas and Lizanne O’Brien

Steve O’ConnorAnne O’ConnorSusan OrnerAndrew OwenThomas OwensJeanne and Bruce PalzerMelvaree PateJo PaternitiNorman and Sheila PayneAlan and Diana PendleyLinda and Dave PerryCheryl PetersonGreg and Paige PoseyChristopher RamirezSue RattmanJoseph RileyMary Beth RomaniTracy and Thomas RoseRichard RoweSanmar CorporationKaren SaundersToby SchielSheila and Richard SchlesingerJim and Judy SchneiderLuke SchockSarah SevillaBenji ShakeArthur and Marilyn SheekeyDonna SieveAntonietta and William SpacciapoliRuth StallingsDon and Deirdre StrassmanRenay SwartsBecky and Robert TanamachiSusan TaylorPamela and Dana TeichDana Teoli Dave and Hiromi TilsnerJerry and Lisa ToddJerry and Shirley ToddDavid and An TootillFrank and Colleen TrainorJoan TrainorJoseph VieiraJohn WaplesLarry and Karen WatkinsThomas and Andrea Wechsler

Paul and Kristin WehrleKolleen WeihrauchRon WeistStephen and Jane WendelCrystal WhittleseyHeidi and Erik WilliamsHubert and Elaine WillmanMarlis and William WilsonWilliam Wilson Jr.Woodstock Power CompanyEvelyn Zohlen

Friend ($100 to $249)231 Farmington Avenue Associates Limited PartnershipsA-1 ServicesRobert and Patricia AaserudeSimon and Sylvia AbboudJoanne AbbruzzesiAcademy Mortgage CorporationRichard and Claudia AckermanLee Ann AdamsJohnda AdkinsBob and Caryn AhernThomas AhernDean and Katherine AkerDavid AkersDuffield AldoraineCheri AlexanderSuzanne AlexanderRobert AllenAnnie AllisonJane AllisonBonnie AndersonGeorge and Gail AndersonLaura AndersonRalph and Martha AndersonElena and Philip AnischenkoTimothy and Michelle AnnisKimberly AnsteyKeely AppleApple, Inc.Betty and Barney Arceneaux

Sharon and David ArmendarizColleen and Shawn ArniDavid and Stacey AronsonBill AtkinsCharles AttixSteven AusbandB & M Trailers, Inc.B.E. Warfield ContractingLaurie BagbyAndrew and Heidi BahmuellerMegan BaierleinBair’s Tree and Lawn ServiceMark and Alberta BallietJoseph and Jacqueline BalukinRita and Mike BasomEileen BasquillCharlie and Danielle BatemanWilliam BauerPatricia BaxendaleAngela BeamOlin and Cheryl BeaverCheryl and Mike BecklesMary Beiting and Jeff Von HandorfAmy Bennis-KimballJohn and Maria BereschakJohn BereschakMonika and Jack BergAngela BergmannBernard Suess Funeral Home, Inc.Barbara BernhardMichael BersterLaura BettgeKevin BeverlyB.L. BickhamH. and Nancy BlakeJoy BlandJason BlanekKristi BloomerJeffrey BodnarMike and Grace BoduraRobert and Anne BoggianoBon Voyage TravelClaudina BonettiAmber BoothRobert BordersAlok Bose

Thomas and Joyce BosterNancy and Leister BowlingWendy and Matt BoyrieBrandy and Beau BozarthJim BradleyAnn BraffMarc and Beth BrdarTom and Suzanne BrennanDaniel and Debra BrockmanVince BuccellatoKaren BuchananNancy BucherPatricia BuchmanEileen BuckleyJustin BuiceMark and Leslie BundyTracy BurgerKevin BurkeTammy BushTodd and Janice ButlerTammy CalandroMichael and Karen CalhounRobert CalkinsDavid and Mary Ann CampeTony CanoJane CantrellJeff CantwellThomas and Kristine CantwellDavid CareyCheryl and Peter CarioDesmond CarsonCase Junior High School Town of SwanseaMaria CastilloJeffrey and Michelle Castle

RACHEL EICHLER AND MIKAL SUE BESSE (MPS IIIA)

19

Peter CastleDenise CaswellHeidi and Keith CaswellFranklin and Carol CatalfamoGregory and Angela CatheyLaura CelliSusan and Roger ChapinSteve and Sandy ChapmanJames and Joan ChartersSteve and Karole ChesserJonathan ChristianMichael and Margaret CiacciarelliRodney CiafreHeather ClarkMelissa ClarkPatricia and Francis ClarkKent and Karlene ClassenRoss and Belia CoddingtonJerrold and Marilyn CohenLinda CohenHeather CokerJames and Martha ColbyRocco and Derith ColicchiaEdward ConnerEsther ConradWilliam and Peggy CookStephen CoonGary and Linda CorbettRonald CoreCounty Derry, Inc.Gary and Judith CoxKenneth and Laura CoyleTraci CrainBarbara and Ron CreccoVirginia and James CuleJason and Tamara CullereEdward CwiertniewiczMelissa DalburgsSherry and Rick DandreaDavis DanielBill and Laura DapperKathryn and Tim DavidsonVictor and Mary DavisPat and Thomas Davitt

Roderick and Liza De LeonLynn DeanLouis DebarberieJohn and Amelia DefilippisDellPaul and Joann DesrosiersThierry and Elizabeth DewagheRachel DianaDolores DiazPatricia DicksonDoug and Diane DiehleJames DoakMatt DobereinerWilliam DollarJonathan and Lisa DolsWilliam and Kim DoughteryJeanne and Maurice DrewRoger and Ann DrinkwalterGinny DuboseVidmantas and Cecilia DudaMike DudleyKaren DunavanBrittany DunayDeborah DunbarPeter D’UrsoWilliam and Carolyn EamesHerman and Mary EarwoodGeoffrey EisenbarthPascale ElkallassiToni EllardNorman EllinwoodLianne ElliottTara and Jack ElstonEnernoc, Inc.David and Judy EngelbertDoris EngibousOscar EscartinLourdes EspinosaJennifer EstesMatthew FairCurt and Sandy FaithEsteban and Steve FalconeMichael FarmerRode Farms, LLCGayle Farrow

Geraldine FaucettDarren FeatherstonePhyllis FeibelmanVivian FernandezMichael FerrantiHildegard and Joseph FilebarkBrenda FillmanWilliam FingerFirst Christian Church of PuyallupMichael FischerPeter FiskBarry FitzpatrickGreg and Sarah FletcherSue and Leonardo FlorMichael FloresKaeline FontaineGregory and Patricia FordeJanet FordeJohn and Sandra FortmannMaria and Steven FoshayAmy FosterTim and Tish FosterVerizon FoundationRonald and Sheila FrancisTina FrankBrad FraserDenise FrenchSheldon and Jacqueline FriedmanGail FrobergLee Ann FulmerJeffrey GabrielJose and Fe GabrielThomas and Sylvia GamacheKaren GarbettRoslynn and Timothy GarvinMorton GaryhowardRichard and Ronni GatesRobert GenauGeorge Bartram - Paul Sand Lodge NO. 298Beverly GerardJayne GershkowitzChris GibsonLeora GiewontHilary GillDennis and Sharon GillhamOlivia Gilmore

Lola GindratJohn and Lynn GladyszDonna GlennAndrew and Stephanie GlockBetty GlockJean and Thomas GniazdowskiWayne and Susan GoeldnerJonathan and Melissa GolightlySvetlana GonzalezGoogleRichard and Shirley GoolsbyDavid and Marsha GorewitzRobert GrangerBelinda and Gary GrayRose GrecoMelissa GreenFran and Rob GreensteinFrancisco and Yvonne GuajardoStanton and Jean GunnellsAmit GuptaLarry GurleyRita HaanKimberly HaggeLaura HahnRenee HammondKerrie HannaDiana and Michael HansonNatasha HargroveKimberly and Frank HarkerMark HarlandJohanna HarmeierPattie HarrellBetty HarrisMark and Keely HarrisBrian HarrisonMark HarrisonBetty and Bernard HarvillKristy HasperJeni HasselbrackWilliam HauseltRichard HavensAndrea HaynesLyle and Jade HaysShawn Healy Joan HeckmanAlice Heitmeyer

Trish HejaziScott and Tracey HerberMark and Darlene HesprichKathleen and Michael HeymansGwendolyn HeysTracy HigueraKathleen HillyardRobbin and Anita HodgkinsSteven HolleyTom and Jackie HoltDavid and Linda HooksJoe and Tina HopkinsMark HopkinsonDaniel HouxLois HowardLaura HowleyJason HuangKaye HughesWilliam and Margaret HughesTod and Angie HummertJennifer HutchesonJay HutsonJohn and Yvette IannelliJoseph and Lorie ImboRebecca InkelFrederick IsaacsonKathleen IsaacsonIWCO DirectLarry and Joy JeffersDean and Stephanie JohnsonKevin Joseph and Beth JohnsonErin JohnsrudTina JohnstonAlicia JonesSkip and Jane Jones

2018 Contributors

ROSE MENDOZA (MPS IIIB)

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continued…

Chelsea Joseph-ButlerBeth JungeJunior Woman’s Club of Hilton Village, Inc.Anthony JusticeMitch KachelJames and Mary KalteuxKristi KaneJerry and Pat KanneyJoseph and Michelle KarlKaren KarnsRaimund and Inge KasnerDan KauffmanScott KeatonMaria KeehanSteven KeeneLindsay KellerMike KelleyDebra KellyChristopher KennedyAnita and William KennellyThomas and Carol KerinsArdis KettererJeanne KiefnerAndrew KileAshley KimDavid KimberlyBrad and Makena KimminauFaron KincheloeBill and Kelly KingLeila KingPat KinsellaJoseph and Jean KirbyBill and Lisa KirchGary and Janet KirchJames and Stacey KleinKenneth and Cindi KlenkeBill KliewerIvan and Leann KoblitzFred Koehler

Cathryn KohlmanTenille KoistinenNeil and Terri KortePat and Ray KorteEdward KowalskiKevin KramichErica KratzAnne KrickStella KruseErnest and Agnes KueblerCarol and Thomas KuhnJanelle KunellisJohn KuprenasSteven La FranceDebbie LaceyDawn and Philip LaorenzaCatherine LatellaDenise LaurenceDavid LauserLaw Office of M. Byron Barnhill, PLLCBruce and Judith LawsonRobert and Katie LawsonLCMS Holdings, LLC DBA Fuzzy’s Taco ShopDavid LebecAnnemarie LedeboerGrant and Kimberly LeeRobert LeeRon and Naomi LeeSusie LeeEric LefkofDanny and Sally LeinenJohn and Rebecca LeonardMonica Leone and FamilyDouglas and Linda LepeirsDouglas and Grace LessingJoan and Mark LessingPeter and Gerilyn Lessing

Janine LevitchJeff and Caroline LewandowskiMichael and Karen LewandowskiDon LewisGib and Sandra LewisJudy LewisToro LidysJames and Debra LindseyJenn and Jamie LipscombRobert and Joan LittlehaleDonna and David LittrellJohn and Millette LitzingerSharon LockhartLodge No. 126Koen and Pat LoevenJenice LongLisa LongMichael LongoValerie LopezDonald and Teresa LoreyThomas and Faye LoughridgeVickie LovettLRE Automotive, Inc.Jim and Doris LupardoLance and Karol LynchJudy and Donald MaasDonald MacMillanLorraine MacMillanJason MadisonJeff MageeMichael MagersBarbara and George MalinaJoseph and Jeanne MalliaCarolyn and Michael ManaganGregory MancinoDon and Carol ManningSteve and Paula ManorElmer ManuelJames and Diana MaolineGary and Lana MarbleMark Krueger & Associates, Inc.George and Judy MarshJay MarshClayton and Iva Martin

Jeffrey and Shellys MartinMary MartinErnie and Sherri MassaPhilip MassaConor and Dania MasseyBill and Laurie MatchneerCarol and Darren MayRodel MayuyoJoseph and Mary McCaffertyDevin McCarthyJames McCuneJennifer McDermottAndrew McDonaldLynley McdonaldTerese McDonaldMichael and Kim McGurkGary and Linda McInerneyZachary MckeeLaura McKeithenWilliam and Karen McNeilRaymond and Amanda McPartlinShirley McShanMr. Tony MearsPatricia MeierDavid MelianMEMICDavid MendenhallMark and Jacquelyn MericleEric and Vicki MerrellMary MessickEdwina MeyersFrank and Jane MiddletonMidway Independent School District Joe and Paige MigliozziJennifer MilderCharles MillerCindy MillerDonald and Joan MillerEric Miller, ODJeffery MillerJohn and Rosalind MillerKaren MillerKara Miller-KarnsPatrick MilliganBertha MinnihanPatricia MioduchTina MiragliottaAaron Mitchell

Hollie MoffetPhillip and Linda MolineJohn MoltzEric and Amber MonganJohn MoonJason and Colleen MooreMitchell and Cherylynne MooreJudith MoralesRichard and Eva MorganLuc MoriniereTheresa MorrisRon and Chris MorrisseyJohn MountainPhilip and Marita MulhollandJohn MullenderBrandye MunnMichael and Anita MuonioBrian and Virginia MurphyMaryrose MurphySusan MurphyHarlan and Sheri MurrellDavid and Cathy MusselmanJon MusselmanMyEngineerCoachTerry NaefCarol Nareski CostnerNautilus Family FitnessRoss and Shawna NelleNew York Life Annuity Service CenterTerry and Emily NicholasSteve and Karen NiesmanAnne NovakNR Pennsylvania Associates, LLCRita NunagJoanna OienMary OligerCristol O’LoughlinMary and James OlsonSondra and Dennis OnealClark O’NeillJames and Mary O’RourkeBrian OrsettiEileen and Larry O’SteenKim and John OuttenDavid Palay

OPENING RECEPTION OF 2018 INTERNATIONAL MPS SYMPOSIUM WITH LYNN AND MICHELLE (MPS I) HOPKINS

21

Carmella and Estelito PanghulanAndrea PapaWilliam ParkerPASCOPaul PasillasReagan PassantLawrence and Kathryn PaterosBeth PatrickCasey PayneDeborah PaynePaula and Fred PedroCristil PellizzariPenn Lodge #709 F & AM Concordville Masonic TempleRob PerezSara PerryPerry HospitalityJeffrey and Karen PetersThomas and Stacy PetersNancy PetersonDarrell and Stacey PevlerPatricia PhillipsRonald and Vicki PhillipsVernon PhillipsSarah PickDan and Pam PierceRhonda PietschHolly PiperBeth Pletcher, MDCindy and Bill PlunkettPoint Pleasant Panther Athletic Booster AssociationKatherine Ponder

Pop Doodle ArtAlan and Kathy PortnoyTom and Carrie PorzelKeith and Barbara PowersSusan PowersPreschool 101Cindy PreussTracy PriceAnne PrigentJoan Prokop-RobertsMichael and Valerie ProvinceRandal PruittShane PurcellBarbara and Keith PusheeCharlene QuinnR. Brooks Mechanical, Inc.Lisa RadcliffErin RadfordDavid and Nancy RamboMia RamierezBradley RandallDavid and Bette RattanJohn and Debby RattoTina RattoDawn RauchDorothy RawlinsonBernard RayCeleste and Stephen RaydoJames and Janis RaynakElaine ReedRandy and Jean ReedJean ReidErin RenaudinBonnie and Ralph RennakerChad ResnerAmanda RevereBrian ReynoldsCarol ReynoldsRichard and Carol RiazziWilliam and Lynette RiceDonna and John RichardsonSummer RichbourgDouglas RichmondDana Riddick-FernandezJudith RiesPatricia and Jim RigbyRick RineerSharon Rinkenbach

Gary and Bonita RitondaroGilberto RivasDonald and Jennifer RobartSteven RobergeJames and Courtney RobertsonMichael RobinsonTerry and Nicole RodeDenyse RodgersMary RodneJulio RodriguezStephen RoederNina RogersSherrie and Tony RomanCarl and Donna RoseAdam RoweBrian and Stephanie RubinsteinSuzanne and Ronald RuchtiMatthew and Melody RuppleRoger and Cheryl RyanMegan SaarDeborah SaegerMichael and Nicole SaldamarcoLysa SaltzmanHarold SamuelsCarmen SanchezSargent Electric CompanyEdward SchmidtAllen and Margie SchubertLarry and June SchultzIra SchwartzBruce ScottDavid and Diane ScottingMatthew and Christine SeabrookPatricia SennettMark and Pamela SeppeltLiane ShaddenLinda SheehanDennis ShellyStewart and Sammie SheppardAnna ShermeyerSuzanne and Randy ShieldsMary and Thomas ShineBrian ShingleSean Shockley

Patricia ShoreToby and Stephanie ShortRosemary and Michael ShourdsBrian ShripkaMary SiglerDavid and Rebecca SilkeyEdward Simcox IIMary SimmonsBruce and Sherrie SimpsonBurt and Leenie SkolnikPriscilla SlavenTerri SlekesRobert and Cheryl SloweyClara SmithCourtney SmithCyntha SmithDouglas SmithJulia SmithKaye SmithMaria SmithMatthew SmithStephen and Sara SmithPaul SolariJan and Don SortmanHeidi SosinskiJames SosinskiSouthern KinesiologyJoshua and Sheri SowdenSt. Alban Lodge No. 529 of PennsylvaniaJeremy Stearns Kenneth StewartJay SticklesPam StoddartBenita StonePatricia StoneIsaac and Brooke StoryJeffrey and Margaret StroehleinPauline StukusLynne SuichKathy and Vic SurmaKim and Bill SwartzWilliam SwartzSystems, Inc.Noel and Nancy TalcottJeffrey TallLinda TamayoMichelle TanenbaumPaul Tarnowski

Daniel and Valerie TeitsmaErin TempleTerra Properties, Inc.Leonard and Linda TerrienTrisha Terrien-PrestigiacomoThe Horse IncThe Smoke Factory BBQ, LLCChris and Melissa ThelenSherry and Charles ThelenMaureen and Jacobus TheunissenJodi ThompsonMichael ThompsonTimothy and Gretchen TierneyBilly TilottaOrazio and Margaret TirellaSusan TobinTyler TreitmanPhyllis and Joseph TrujilloJames and Bonnie TullyTom TurnerJulie UllmanLeslie and Alex UrdanetaUSA CouriersDavid VallejosEdward and Mary VargasElizabeth VengoecheaMary VernonVictory Machine and FabricationRyan VierraDavid VillaBarbara VitiMichael and Carillee VitoneRobert and Amy VosoLewis and Pamela WaberMarty and Sandy WagnerMichael WagnerJohn and Shirley WakeCurt WalderBev WalkerKevin WalkerZhanzhi and Pei WangAmy and Allen WardellRuth WareKenneth and Victoria Warner

2018 Contributors

EDITH LACROIX AND FELIX-ANTOINE ABULET (MPS II)

22

continued…

Michael WarnkeTressia Watkins-ArnoldPamela WattsKiran and Kyle WeaverThomas WebsterStefanie WehrenDon and Lisa WellsRandal WestCheryl WhiteMary and David WhitemanBill and Nelda WhitesideCoulter WickerhamThomas WillTimothy WilliamDennis WilliamsGary and Lisa WilliamsJacqueline WilliamsJeanne WilliamsKevin and Toni WilliamsRick and Dawn WilliamsW. WilliamsJim and Kim WilsfordCaroline WilsonShirley WirklerHerman Wise Jr.Matthew and Rachel WojnarowskiHal WoodHarold WoodWorkday, Inc.Jimmy and Susan WorkmanJoe YeeSesha YeruvaGilda YoudeemRichard ZachariasonJoe and Jennifer ZamboniCynthia and Kenneth ZawackiAndrew and Louise Zygmuntowicz

Donor ($26 to $99)Kay Anne and Peter AbbottMelissa AbleKevyn and Stacey AdamsDonald AddisonLaura AdrianKenneth and Donna AhlesLise Aissen

Joseph AkersIrene AlarconJudy AllenMarc AluDonald and Julie AmesRainier AmoraDenise AmosRobert AndersonRandall AnhaltCharles AntoniniSilvia AquinoDarrell and Mary Ann ArcherAnnie ArguelloGail ArmatoMatthew ArthurPeter and Diane ArzbergerRichard AstaritaNicole AvitabileAndrew AyersTesha BabkaRussell and Catherine BahmCindy BaileyRebecca and Robert BaileyRobert BaishRenee BakerAlyssa BalkamNicolette BannisterAngela BarbaryLen and BarbaraSusie and Jim BarnesKeith BaronMary BarringerRhonda BartelSteven and Alice BartelsJeter BasdenMargery BassPatricia BatesSheryl BatesJody and Mark BattonLucille and Kristine BaumanAlice and Ron BeamMayla BeatyMary and Don BeaudinJanet BekRolland BekKimberly BellRose and Dominic BencivengaRani BenskinCaspar Bentinck

Linda BergerDon and Nina BergquistLloyd and Janet BerningTony BertauskiBarbara BettiAkhil BhallaDarlene BiasottiNathan BibbDea BiberdorfNancy and Rhett BickleyMarybeth BiehlJennifer BielefeldtJoann BiglerNaya BilbeisiSara Biro-RaburaBob and Elinore BisnettRichard BivensBretaigne BlackAmanda BlayneJudith BlixAlison BlueMary and Will BodendorferAmber and Marcus BolhuisMichele BonistalliBruce and Victoria BonnellLydia BonnerMartha BoothScott and Marcia BosakDiana BoucherEthan BouryngJackie BoveToni BowenJulia BradleyElizabeth BranchDavid and Mary BristolPatsy BrooksEugenie BrownEverett and Jo Ann BrownJulianne BrownMichael BrownVictoria BrownDelbert and Jody BrownfieldSue and Paul BroylesWilliam and Mary BrubakerVirginia BryantKiley BucknerLarry and Myrl BurdettClive BurgerDebra Burkeen

Linda BurttRaymond ButlerTim and Valerie ByersKyle CabertArthur CabralRosy CahillDiane CalderoneLaura CalhounB.I. CampJerry and Charlotte CampbellClaudia CanasBarbara CannonMary CannonLiching CaoChristopher and Tanya CarboneMarilyn CariolaJohn CarpenterLisa CarterDaniel and Nicole CasaleKevin and Kathryn CaseyLinda and Everett CashattJohn and Barbara CasinoLaura CassianiDonna and Elio CastellanoKate CastellanoJonelle CastigliaBokhee ChaJennifer ChabusJodi ChambersLewis and Ann ChapmanMichael CharkoudianLarry ChattooAngela ChavezZhesi ChenDaniel and Sharon ChisholmRyan ChitwoodChristian and Missionary AllianceChris ChurchTyson and Tanya Elizabeth ClarkKisha ClarkeWilliam ClarkeStephen and Denise ClaytonTerry ClaytonCassi ClintonRichard and Blanche CochranJeanne CohenMaida Cohen

Rick ColeAlicia ColemanLisa CommonRichard Comstock Jr.Lois ConklinTherese ConnerLeah ConroySharon and William CookAngie CoonceGeorge and Sharon CostaMelissa CotterKatheryn CoxCarlos and Estella CravenMichael and Anne CreccoDan and Lisa CremeansNikoleta CrouchErika CruzWendy CumberlandEdward and Ann CummiskeyMarie CundiffPeter and Kimberly CunneenJanet CunninghamLyndsey CunninghamSteve CuomoBill CurnynRyan and Kelly CurryMichael DaigleShannon DalyLeslie DannhausJoseph and Jane DapkusLinda DapkusBobby and Kelly DaquaraRichard and Kara DarrellMohammad DavariDarin and Lisa DavisElizabeth DavisElizabeth DayPaul Day

SAVANNAH TIMBROOK (MPS VI)

23

Denise DayeGordon and Cynthia DebowerRussell DekelverSteve and Alanna DelacrausazJoseph DeLacyRoger DeleonDel-Max Restaurant SupplyBethany and Christopher DelvinSandra DemelloMaria DemonteMelissa DennyAlicia DentonJane DentonJessica DenunzioJulia DepintoRebequa DerouxBeatrice DessinoMichelle DetoreKrista Dezerega-ThomsonDennis and Mary DillmanPatricia DiluzioDaniel DiNardoElizabeth DiniApril DoddChelsee DoddBrian and Jennifer DolanDaniel and Dolores DomanTina DonatCarolyn and William DonelsMegan DoranMauri DouglasChristine and Raymond DowneyGuy DoyonMary DozbabaRobert DriscollRoger and Lynn DriskellRichard DuffieldRussell DugoniKatie DunbarRonald and Karen DuncanJulie and Bryan DurnenShari DuscenneAngie and Charles DwyerCandance EastmanRussell and Debra EberweinCatherine EgglestonDiane Ehni

Felicia EhniKenneth ElliottMark ElmerDarla ElswickKendra EmbryWayne and Joan EppehimerDonna EppersonScott EppersonSusan and Robert EricksonTerry ErmnoianJennifer ErmoianBrenda EslingerKenneth and Ruth EspenshadeSteven and Kathryn EspenshadePatricia EspinalMarissa EspinozaJohn and Geraldine EulianoKarl EureniusExpedia GroupRobert and Abigail FabricanteMarina FalaleevaBonnie FarmTasha and Bruce FarrellLisa FatovicMary and Nicholas FaulknerElizabeth FeldmanLois FergusonLucille FernandezAngelica FerreraMatthew FerrignoBrian and Kathleen FinnWilliam FischerDarsie FiskChristine FitzgeraldSandy FitzgeraldMartha FlemingRichard and Cheryl FletcherGary FloresAndrew and Joan FlynnJason ForbisCynthia FosterNancy FrancisDuane and Beverly FrankGreg FrankPaul and Martha FrankDonald and Betsey FrankelRobert and Karen Freeman

Staci FreemanMaurice and Diana FreyFred FriedmanBernie and Barbara FriedrichRebecca FromcheckMark and Marie FrostAnna FunkhouserNga FunnellDouglas and Linda FussingerG & F Carpet, Inc.Celeste GalatiIvan GallegosDawn GarciaCharlotte and Keith GarrettScott GeigerMichael and Marcia GellerGenentech GivingstationGenworth FoundationKevin and Sheila GeorgeNatasha GeorgeHolly and Christopher GerenserTimothy GesnerArthur and Joan GiammarinoTyler GibsonMary GillsSuzanne GinsburgEileen and Bob GittinsKathy GodegastMichael and Joanne GoffredoBecky GoldichEster GonzalezAnn GoodellFrances GoodellGeorgia GossLee and Tammy GottschallAndy GrahamMaxine GrahamAnna GramH. GranberryLen and Sue GrantLeslie GravesLorne and Tamara GreenCoyte and Jilian GreerRuth GregoryBernard GriffinJack and Lynn GriffinGerard GrimmRobert Grosz

Robert GroveJoshwa GruverJuan and Sylvia GuajardoRaquel GuckeenJerry and Jennifer GuerraChristian GuevaraKarina GuevaraKevin and Jackie GullDiane GunnRoger HackerEdward HafnerBrent and Krissie HairstonAudrey HallTom HambletonCathy HamillHoney HamiltonTed and Char HamiltonDavid and Cathy HammAugust HarderClaudia HarderDan and Connie HardestyRonald HardinBilly and Diane HardisonRodney and Donna HardyC.A. and F.M. HargraveAlecia HarpKim and William HarperJeffrey and Barbara HarrellChristina HarrisRaymond and Renee HarrisSusan HartmannElizabeth HartsellRonald and Janis HarveyMike and Sherry HatfieldConnie HawkinsKathryn HawkinsStephanie HaydenGregory HayesMichelle and Steven HayesLarry and Barbara HaysRalph HeathAshley HebelKimberly HeilingRandi HeinrichsenMary HelenTracy HempelLocinda Hennerberg

Jeanette and Fredy HenriquezAnastasia HenryJacki HenthornePaul and Marjorie Herbert Jr.Vivian HerreroMarlys HerringSusan and Thomas HewittBeverly HillWilliam HillAlison HirschelSandra HockenyosBetsy HoffmanJoanne HoffmanPriscilla HoffmanFrederick and Kathleen HogeCarolyn HollandThomas HollandTravis and Alyssa HollandDarlene HollidayKelly HollingsworthTerri HollmannAshley HolmAlan HortonDan HouxNelson and Lillian HowardBonnie and Frank HowarthConnie HoweJack HowesSusan HubbardElaine HughesKathy HunterMarshall HustonChristina HymanRobert and Marguerite IannaconeLinda and Allan IezziMollie IfshinJoseph and Teresa IlardiKourosh and Leticia IranpourTanadi Irwin

2018 Contributors

SPENCER FRIEDMAN (MPS II) AND FAMILY

24

Rosa IslasDonald IveyEmily JacobsenHelen JacobsenJean and Richard JacobsenJoanna JanssenLinda JensenBen JessenSally JochimsenAnnalee JohnsonDenise JohnsonEdward JohnsonJacquelyn JohnsonJason JohnsonChris and Lisa JonesKim JordanJennifer JordenLaura JosephNicole JudnicCatherine JurgensenChristy JusticeElaine KahnsDan and Natalie KanneySusi KaplanGloria and Irwin KatzMichael and Laurie KeaneSean and Elizabeth KeelyChristine and Kirk KehrleyRolla KehrmanMark KelleherGregory KelleyRobert KelleyColin and Michelle KellySusan KellyMolly KendallJaneth KennedyKeurig Green Mountain, Inc.Jessica KevinsLisa KhavkinAlan and Kathleen KimuraStacy KingSusan KingBryan KirchRobert and Mary KirchSarah KirkpatrickJennifer KlauerEdwin and Ruth KlenkeCynthia KneppLouise KofronSuty KomsonkeoRadhika Kotangoor

James KremersDale KronebuschMargaret KruseBenjamin and Mary KuhlmanRichard KulkaJerry and Delores KunzDebbi KvietkusDiane LaforgesGene LaforgesDelia LaiewskiRobert and Vivian LamondRaymond and Kathy LandryDanielle LaneJulie LangeMichelle LankfordTerry and Sarah LanterGail LarsonKaren LarsonLouann LauckKristen LavelleWilliam Lavine, DMDDennis and Marilyn LawlerErik and Christina LawrenceJudy LawsonMarc LeahyJames and Kristina LeamerKenneth and Sandra LedfordJennifer LeeKevin and Robyn LeeLauren LeeMike and Amy LegendreGreg and Kristen LehmanJohn and Linda LejeuneAdam LernerMatt LesniewskiRobert and Maribeth LetourneauScott and Gabriella LichEmily LightLynn LiloreMark and Mary LinenbrokerKory LipscombEmily LisiScott LittrellJulia LobergerAlice and Dennis LocyJoanne LoeBeth and Nick Lombardo

JulieAnn LoneroKara LongJohn and Lauren LongoJoel LoomisLisa LopezAlayne and William LowenbergerElizabeth LoyJoe LuczakChristine LurtzJessica and Darlene LynnDave and Jean MacDonaldLori MacPhersonJohn MainwaringMajestic Dental Designs, Inc.Tisha MaloSusan MandilagGloria and James ManigrassiChery MantzellJerome ManuelAndre and Melissa MarcotteJimmy and Renea MarineMarrone’s Deli & Catering, Inc.Heather MartinJason MartinSusan MartinJorge MartinezMichelle MartinezDorothy MaskMarilyn and Paul MassaroGerardo and Lucille MasucciCara MattsonJulia MatuozziDouglas MatzkeMichaelle and Wolfgang MauchMichael MaxwellMichael McCarronAmber McCullougJoy McDerrmottShelly McdonaldWally McDonleyMark McGurrinCarol MckeeMelissa MckeeJudith McKinstryCharles McLeanDonn and Dana McMahan

Jean McMasterFatima MejiaDonny and Molly MerrillDianna MessengerJulie Mettert-VannMaryal MewherterMicrosoftMichele MierzejewskiJana MillarCynthia MillerJune MillerMary MillerJessalee MillsRachel MillstonePaul MiltgenLynda MinorTed MitchellDaniel and Laura MlacnikEllen ModesLynn MoffettEdith MonachelloMichael and Lillian MonterosaKevin and Tammy MooneyKim MooneyBrenda MoranLinda MorganTerry and Joy MorganMegan MorrowPamela MoteTerrance MoultrieKen and Jackie MuellerLevi MuellerKevin MullahyLynne MullinerTim MulroyChristopher MunozChristine MurrayCurt MurrayEllen MurrayJo Ellen MurrayKevin MyersPaul and Gail MyersCarl and Kathleen NagyTekisha NashSivakumar NatarajanNicole NeedlesJohn and Dorothy NegangardRoss NelleThu NguyenEastern and Southern UW of NJKen and Helen Noble

Steven and Angela NormanDavid and Mona NoyesAfshan NumanSarah OakleafConnie O’ConnellAmie O’ConnorKevin and Danielle O’ConnorNan O’ConnorJulia O’HaraJackie O’KeefeSheila OliverJames and Cindy OlsonMatthew OrganJason and Christi OrmeroidRobert and Barbara OsgoodEugene and Elizabeth O’SheaDorothy and Ralph OstellaMichael and Evelyn OstellaBonnie OvenAndrea OwensRichard PacittiDavid PagonaKerry and George PainterDaniel PalmerShirit PankowskySharon ParnellJason and Mandy PateJulie PatriciaJennifer PavlovicAnna PayneJodi PedisichStephanie PeeblesTeresa Peecook

continued…

ULTRAGENYX MEPSEVII APPROVAL GALA: RYAN DANT (MPS I), SILVIA RAMIREZ, LAYNIE HOLLAND (MPS I), DR. PAUL HARMATZ, MADISON HOLLAND (MPS I)

25

Gary and Marcia PentzChristopher PepperLinda PerrellaEdward PerronJeff PetersJuergen PetersSusan PetersNorman and Elizabeth PetersonRobert and Nancy PetersonJosephine and Paul PetruzziYvonne PhillipsRuth PiasDiana PickupJolene and Tadd PieferPatricia PikeRaffaele and Rosemarie PisaniLisa PitneyCarrie PittRoger and Ruth PlineWendy PoageNoelle PolicastroStephen and Kathryn PollardMargaret PorterLinda PostCynthia and George PowersMargaret PrattRobert PurdumAlan PutnamFelicidad QuiloPatricia QuintenzThomas and Lisa Qvistgaard

Stephanie and Edmund RabuseKris and Eden RadcliffeRobert RadekeShelly RaichelMark and Morgan RaleighBill RamerRosa RamosJoanne RamseyRalph and Marva RamseyMaryann and Howard RamshornSandra RapicavoliMatthew and Kelly RapoportKendal RasmussenFloyd and Sharon ReedCharles ReederAlfred RegaladoAndreas ReikJeffrey and Deb ReinkeLee ReinsimarPaul RendichKirk and Kathy ReuterTimothy ReznicekPhillip RhodesJennifer RichieScott RileyKim RitchieChristian RivasJudith RiveraRonaldo RiveraJoseph and Catherine RizzoKathy RobertsSally and Charles RobertsDan and Rita RobertsonCorey RobinsonNorman and Carol RobinsonMelodie RobisonEmilio RodriguezJessica RoeslerDave and Janet RoessnerBek RollandRichard and Darlene RomeJulie RomigJohn RoseCarol and Karima RuckerMichelle RuizSilvia Ruiz

Ann RushLisa RuxPaul and Kathy RyszMichael SKaren SabbanSusan SabolDana SaifRandy SaittaSalesforce.com FoundationGulabsinh SampatChristina SanchezJonathan SanchezMichelle SanchezVictor SanchezJana SandersRodger SandersA.L. and Angela SarantinosSusan ScarboroughJoann ScarpelliJames and Elaine Schaefer Jr.Shelly SchettinoRoger SchlueterAshley SchneiderGreg and Kathleen SchneiderNorma SchoenNicole SchouwenaarCatherine and Peter SchreiberJean and Randy SchroederErin SchwartzJulie SchwartzMark SciabacuchiDavid and Virginia ScottLeslie ScottRon ScottBeverly ScriberMegan SebancDean SeeleyRonald SeherBob and Carmel SeifertBrian ServiceMark ShafferKerry ShamalyGreg SharritsArisela ShawMuhanad and Jumana ShawkatAudrey SheetsJared SheltonNancy and Kent Shelton

Susan SheppsRobert SheridanIan ShiehDavid ShivakPam ShurmantineDaniel SilbernagelVicki SimonEleanor SimsSam and Judy SimsSilvia SisoAnne SiudzinskiRuth SjostromHaldri Ann SjovoldMelissa SkeltonShaun and Megan SkeltonJuliet and Dean SkuldtMelinda SleightEdward and Anne SmithElliott and Melissa SmithFrancis SmithJanice SmithJennifer SmithJoan SmithLenwood SmithMark and Mary SmithMaureen SmithTimothy and Theresa SmithWally SmithJosh SommersMichael and Laurie SparkmanSharon SparlinAnna SpriggsNorma StaatsRoderic and Pamela StaffordTricia StahlAnndrea StameyJessica StankardMax StatumDeborah StehlikRobert and Ellen SteinmanMyrna StelmanDavid and Kathy StembridgeDonna StephensonMark SteudelSummer StevensJeremy StewartTheresa StovekenNancy StringhamR. and Lois Strom

Hollie StuartLarry and Diane SuhrSuhre’s Co., Inc.Alyse SummersM.J. SureauBradley and Carolyn SwansonBeverly and Allan SweenyWendy SwensonJack SwepstonDonald and Rachel SwickerTania TamMyke TavarresAmanda TeplitzNikki TerryThe Carle CollectionThe Illumina FoundationThe Oxford Grain & Hay Co., Inc.Erica ThielMichael ThielenTerri and Allen ThomallaMary ThomasPatsy ThomasGrace ThompsonNancy ThomsonAleksandr TikhonovTim TimmonsTisBest PhilanthropyNita ToddTodd and Gerry TollJoseph and Christine TomlinsonPamela TonHilary TopperMiguela TorresRobert and Janine TownsleyCarol TreutleinSherri and Alan TribuzioTrident Enterprise’s, Inc. T/A Earl’s Sub ShopArleen TriooWilliam and Faye TrotterBenjamin TurnerKathy UrbanekSagar VaidyaRay VanSickleCarol VansplinterNancy VardaroJeanette VelsmidMarian VennemanCarol and William Verrastro

2018 Contributors

NICOLE BENNETT (MPS II SIBLING)

26

Gabrielle VestMichele VicarroElizabeth VielhauerPeter VincerJennifer VinhJohn VitaleCharles Vite, DVMDonald and Blanche VlasakDavid and Lori VorbeckMelissa Wade-MeyerDavid and Nancy WagnerLinda WallaceTheresa WallinLisa WardPat Keegan WardWatermark Custom Homes, LLCSteve and Martha WatersDoris WatsonElke WechslerHelene WechslerDaniel WeissPatricia and Gerald WeissBrian and Jessica WellmanMichelle WellsTaylor WellsJoan WernerJ.P. Morgan Chase FoundationDena WhiteMichael and Amy WhiteRaymond and Samantha WhittakerBruce and Mildred WigglesworthJerry and Connie WildbergerTony WildermanSonya WildermuthMartha WillemainBrian and Dolores WilliamsDiane and Leslie WilliamsGarrett WilliamsGregory and Kristina WilliamsJohn and Gail WilliamsJoseph and Jacqueline WilliamsKim WilliamsMaureen WilliamsPia WilliamsJulie Willoughby

Aimee WilsonCharlotte WilsonSheila WilsonTara WilsonJan WimberleyChad and Courtney WinklerAaron and Julie WinnerAnne WittJohn Wolfe, VMDSharon WolpoffJocelyn WongVictor WongVictor and Vivien WongSusan WoodwardGilda WorshamStephanie WyattJudy and Mansour YaminXi YinlunCaitlin YonkerMarcus and Angela YoungTommie YoungAnthony and Gladys ZellerLian ZhuBob and Kate ZimmermanDavid Zimmerman

Patron ($5 to $25)Izdehar AlghazaliJordana ArchuletaLadonna and Dewane ArnoldKatie AuerbackMeaghan BakerCynthia BauerGordon and Barbara BeyerBlue Cross Blue Shield of North CarolinaKathleen BradyDianne BrooksKevin and Charlotte BrowningLavern BruceRobert and Marianne BrulhardtCourtney BrunoBarbara BurnsTony and Claudia BusseCarole CarballoCarbon Vintage Diamonds

Sarah CareyRayna CarneyAndrew CharestCarrie CichonJo CoanPaul and Lori CoatySantos CoelhoAdam ColeRoger and Robin ColemanStephanie and Shawn CozinePatti CrawshawLinda CrossSusan DanielsonGary DavisPamela and Robert DeanFrances DemarcoJudy DevriesJustin DickersonTerry and Irene-Mary DunbarLeroy and Denise DupertGeri EdwardsChristopher and Katie EndicottJohn and Trasey FalconeStephanie FaustAnthony FedewaAmanda FernLois FinneyBarb FisherNorma FritzLawrence and Stacey FroehlichKenneth and Bernice GallowayJordan and Shawn GarvinLiz GibsonAmy GiolettiEugene GoldfarbHeather GrundGail GuidoniSejal HallJames and Krista HamiltonPatrina and William HesslinkJoseph HoLisa JacksonDebra JenningsKimberly JohnsonJane JohnstonAaron Kahn

Jeneba KaikaiEric and Amy KaiserJessica KallbergKathleen KapesJames and Tabitha KappelSusan KesterJonathan and Katie KirbyGloria and Darin KlaesgesJennifer KleinChrista KurtanskyStacey LapineLauren Lund Psychological ServicesChristopher and Amber LaysonSteven and Elissa LazarusKory and Karen LeppoTara LewisMarion LidskyDolores MacRiStephanie MaierJennifer MarshShirley MathewsonAlexis MaulucciTracy MayoRobert and Debra McArdleLauren McCarthyJack and Colleen McNamaraJohn and Catherine MedleyRebekah MeltonEdwin MinnerTracy MorelandTimothy MorganWes and Kimberly MorganMadeline and Merritt MoseleyTodd and Tracy MulroneyAlma MunozSara MyersEmily and Shawn NicholsConnie NurreLl OuRebecca PalumboStephen and Donna ParenteJennifer ParkPayPal Giving FundDiana PeluzzoGemma Perez

Ambrose and Patricia PerreaultPat PerrielloNicole PottsRandy and Julie ReneerJimmy and Willow RiceMarey RichinsDiane RichterBecky RitzMelinda RoelfsPatrick and Carrie RyanKariana SchneblyMonica SchmalzDonald and Janet SchmidtAmy SeegerCoby SheppardEdgar SkaoskDarby SnyderNatalie StoneLaura StrattonAnne StumpKayla TaulDennis TeachworthAlex and DeAnna TimbrookCaleb TurkRich and Debbie VanderpoolDebra WhitebeckRick and Rebecca WildmanBill and Betty WirthMichael YocumDavid and Ruth YoungYuanyue Zhou

WORLD MEETING: STEPHANIE BOZARTH (USA), JORDI CRUZ (SPAIN), TERRI KLEIN (USA)

27

MPS and ML

MPS IMPS I H HurlerMPS I S ScheieMPS I H-S Hurler-Scheie Enzyme / a-L-Iduronidase

MPS IIMPS II Hunter Enzyme / Iduronate sulfatase

MPS IIIMPS III A Sanfilippo A Enzyme / Heparan N-sulfataseMPS III B Sanfilippo B Enzyme / a-N-AcetylglucosaminidaseMPS III C Sanfilippo C Enzyme / Acetyl CoA: a-glycosaminide acetyltransferaseMPS III D Sanfilippo D Enzyme / N-Acetylglucosamine 6-sulfatase

MPS IVMPS IV A Morquio A Enzyme / Galactose 6-sulfataseMPS IV B Morquio B Enzyme / B-Galactosidase

MPS VIMPS VI Maroteaux-Lamy Enzyme / (arylsulfatase B) N-Acetylgalac-tosamine 4-sulfatase

MPS VIIMPS VII Sly Enzyme / B-Glucuronidase

MPS IXEnzyme / Hyaluronidase

ML II/IIIML II I-CellML III Psuedo-Hurler polydystrophy Enzyme / N-acetylglucosamine-1-phosphotransferase

Mucopolysaccharidoses (MPS) and Mucolipidosis (ML) are genetic lysosomal storage diseases (LSD) caused by the body’s inability to produce specific enzymes.

2018 INTERNATIONAL SYMPOSIUM, OPENING RECEPTION: STEPHANIE BOZARTH, CHERYL AND AUSTIN NOLL, LYNN AND SCOTT HOPKINS, AND CAROLINE DABNEY

2018 Board of Directors Stephanie Bozarth / Chairman(MPS IV parent)McLean, VA stephanie.bozarth@mpssociety.org

Kim Whitecotton / Vice Chairman(MPS II parent) Modesto, CA kim.whitecotton@mpssociety.org

Lisa P. Todd / Treasurer(MPS II parent)Albuquerque, NM lisa.todd@mpssociety.org

Amber Mongan / Secretary(MPS I parent)Eugene, OR amber.mongan@mpssociety.org

Austin Bozarth (MPS IV parent) McLean, VA austin.bozarth@mpssociety.org

Caroline Dabney New York, NY caroline.dabney@mpssociety.org

Amy Holland(MPS I parent) River Oaks, TX amy.holland@mpssociety.org

Steve Holland (MPS I parent) River Oaks, TX steve.holland@mpssociety.org

SCIENTIFIC ADVISORY BOARD Patricia Dickson, MD, Committee ChairmanLorne Clarke, MDAlessandra D’Azzo, PhD Robert Desnick, MD, PhDJulie Eisengart, PhD Matthew Ellinwood, DVM, PhD Paul Harmatz, MDMark Haskins, PhD, VMDKim Hemsley, PhDJohn Hopwood, PhDWilliam G. Mackenzie, MD Joseph Muenzer, MD, PhD Elizabeth Neufeld, PhD

Lynn Hopkins (MPS I parent) Long Beach, CA lynn.hopkins@mpssociety.org

Scott Hopkins(MPS I parent) Long Beach, CA scott.hopkins@mpssociety.org

Larry Kirch (MPS III parent) Scottsdale, AZ larry.kirch@mpssociety.org

Kris Klenke (MPS II parent) Worden, IL kris.klenke@mpssociety.org

Jason Madison (MPS II) Seattle, WA jason.madison@mpssociety.org

Austin Noll (MPS III parent) Middleton, WI austin.noll@mpssociety.org

Christine Tippett (MPS IVA parent) Littleton, CO christine.tippett@mpssociety.org

Beth A. Pletcher, MD Lynda Polgreen, MD, MSKathy Ponder, MD Mark Sands, PhD Edward H. Schuchman, PhD Calogera Simonaro, PhDWilliam S. Sly, MD Richard Steet, PhDCharles H. Vite, DVM, PhDSteve Walkley, DVM, PhDDavid Wenger, PhD Klane White, MDChester Whitley, MD, PhDJohn H. Wolfe, VMD, PhD

2018 SCIENTIFIC ADVISORY BOARD MEETING

STAFFPresident and CEOTerri L. Kleinterri@mpssociety.org

Development DirectorBrian Buechlerbrian@mpssociety.org

Communications DirectorJacob Desjarlaisjacob@mpssociety.org

ControllerAngela Guajardo angela@mpssociety.org

Family Support LeadCoreen Graycoreen@mpssociety.org

Family Program CoordinatorLeslie Urdanetaleslie@mpssociety.org

Program & Development Coordinator Katelyn Blackmankatelyn@mpssociety.org

Program Support Meredith Gray Stone(thru June 2018)

Administrative Support AssociateRebecca Schranzrebecca@mpssociety.org

National MPS Society P.O. Box 14686 Durham, NC 27709-4686

NON-PROFIT ORG.U.S. POSTAGE

PAIDCHAPEL HILL, NC

PERMIT #74