van andel institute's highlights of hope february 2015

An Honor and a PrivilegeWinterfest is made possible by dedicated donors and community leaders, like Blair and George Sharpe Jr., whose father has Parkinson’s disease. The brothers, along with their wives Missy and Michelle, began serving as co-chairs of Winterfest after receiving an invitation from VAI Board of Governors member Tony Asselta, who had organized the event for more than eight years. Like the Sharpes, Asselta’s father also had Parkinson’s.

“Everyone in our family believes in the work being done at Van Andel Institute, so we thought this was a perfect opportunity to take action,” Blair said. “It’s a privilege to chair an event that has a direct impact on human health.”

Why We GiveThe Sharpes believe that the Parkinson’s therapies of the future begin with innovative approaches to biomedical

research. “It’s amazing what is happening at Van Andel Institute with regards to Parkinson’s research,” Blair said. “The Institute’s leadership, focus on innovation and accelerated approach to translational research is something, as a donor and event co-chair, I am proud to support.”

Impact to DateThe $1 million Winterfest has raised to date helped establish VARI’s Center for Neurodegenerative Science (CNS). Its first employee and laboratory was that of Dr. Patrik Brundin, an internationally renowned expert in Parkinson’s disease, who joined the Institute as its inaugural Jay Van Andel Endowed Chair in Parkinson’s Research in 2012. Since then, the CNS has grown to 40 individuals in more than 15,000 square feet of laboratory and office space. The Center has made significant contributions in recent years, including describing how a misfolded protein

associated with Parkinson’s disease moves through the brain. This finding may lead to new therapies, and is indicative of the capacity for discovery that the CNS has and will continue to have in the future.

Impact for the FuturePerhaps one of the most exciting recent CNS developments is a unique partnership with The Cure Parkinson’s Trust on the Linked Clinical Trials (LCT) initiative, which is aimed at repositioning existing medications approved to treat other diseases and that have also shown promise in slowing or reversing Parkinson’s in preclinical experiments. By selecting drugs that are already in use, LCT aims to get effective new treatments to patients on a shorter timeline, giving hope not only to those who currently have Parkinson’s disease but also to those who may be diagnosed in the future.

HIGHLIGHTSWINTER 2015 VAN ANDEL INSTITUTE’S

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HOPEYou Did It! Winterfest Reaches $1 Million Milestone to Benefit Parkinson’s ResearchWinterfest, Van Andel Institute’s (VAI) premier gala benefiting Parkinson’s disease research, celebrated its 10-year anniversary on February 19. Since its inception, the signature special event has raised more than $1 million to directly impact Parkinson’s disease research at Van Andel Research Institute (VARI).

Blair Sharpe and George Sharpe Jr. serve as co-chairs of Van Andel Institute’s Winterfest to honor their father who has Parkinson’s disease.

For information on VAI’s upcoming special events, visit www.vai.org.

HIGHLIGHTSof HOPE

The Center for Epigenetics: A New ParadigmYou Can Support Cutting-Edge Epigenetic Research into Cancer and Neurodegenerative Diseases

What is Epigenetics? Epigenetics is the study of how the packaging and modification of DNA influences which genes are used or kept silent in a particular cell. In recent years, epigenetics has moved to the leading edge of biomedical research as a way to personalize cancer therapies and holds promise for treating other conditions such as neurodegenerative diseases.

Why Epigenetics? Studying epigenetics gives scientists critical insight into how errors in epigenetic processes promote cancer development and progression, and opens up an avenue for development of novel cancer treatments that target these epigenetic processes. Epigenetic therapies work by correcting these errors and have the potential to directly treat cancer, as well as sensitizing patients to traditional treatments such as chemotherapy or radiation, making these therapies more effective.

Dr. Jones’s Plan In the year since his arrival, Jones and his team have recruited world-class scientists to the Institute and are working with leading research and clinical organizations to move promising epigenetic therapies into clinical trials. To further this mission, the Institute recently partnered with Stand Up to Cancer (SU2C), a program of the Entertainment Industry Foundation, and committed $7.5 million over three years to support the continued work of the SU2C Epigenetics Dream Team that Jones helped launch in 2009. The international Dream Team includes members from VARI and five other institutions - four in the U.S. and one

abroad - and focuses on developing epigenetic therapies that can be applied to cancer, such as lung cancer and blood cancer.

Gravitational PullJones is optimistic that the Center for Epigenetics will create a unique identity for the Institute, help recruit top-level scientists and develop lasting collaborations with other scientific institutions.

How Can Donors Help? Donors can help continue the growth of the Center for Epigenetics by making a direct gift to benefit Jones and his team. Four scientists joined the center in 2014, and the Institute continues to recruit top-tier experts to work on dynamic initiatives in the field of epigenetics. Donations help fund basic research that can then be translated into innovative new therapies at the clinical level, providing new hope for patients. Donations also support the center’s mission by helping scientists conduct research to better understand how normal epigenetic processes in the human body work and how to fix them when they have gone wrong, which can cause a variety of diseases.

“Our goal is to create a gravitational pull of excellent science, talent and collaboration toward VARI,“ Jones said. “The Institute is in an outstanding position to lead the way in epigenetic research. I think we are at the cusp of something truly extraordinary.”

2 | Van Andel Institute Highlights of Hope

When Dr. Peter Jones was appointed Van Andel Research Institute’s (VARI) research director and chief scientific officer in 2014, he brought an exciting new area of biomedical research to the forefront of the Institute’s scientific portfolio. Since then, Jones, an expert in a field called epigenetics, has implemented a plan that harnesses the power of epigenetic research to develop groundbreaking therapies for cancer and other diseases, such as Parkinson’s.

Dr. Peter Jones, research director and chief scientific officer, VARI, is a leader in an emerging research field known as epigenetics.

WINTER 2015 VAN ANDEL INSTITUTE’S

Van Andel Institute Highlights of Hope | 3

What is the main focus of your work?The broad focus of our basic and clinical programs is to regenerate heart muscle; that is, to repair the heart. On the clinical side, we are running trials on people with advanced heart failure, and are trying to find the best way to optimize these patients for future regenerative efforts. On the basic science side, we are trying to find ways to generate new heart muscle cells in the lab. We can now reprogram cells

from skin cells and peripheral blood cells to become heart muscle cells. Another line of our research is to better understand the heart’s capacity to generate new heart muscle cells.

What does your research mean for the future of heart disease treatment? If we can regenerate different parts of the heart—for example, if a person has pacemaker cells that are not healthy—we could transplant new pacemaker

cells instead of implanting an actual artificial pacemaker. If you have heart failure, we could implant cells that could help the heart to beat.

What separates VARI from other research institutes? It is a smaller institution than my home University of Lund in Sweden, which has 60,000 students. The Institute’s size allows for shorter communication pathways and it is more adaptive to changes. Under the leadership of Research Director and Chief Scientific Officer Dr. Peter Jones, VARI has undertaken an impressive science-focused growth and recruitment strategy, which attracted several world-leading scientists. There is an enormous energy, hope and enthusiasm in the organization.

The Future of Cardiovascular Research: Q & A with Dr. Stefan JovingeHeart disease is the leading cause of death among adults in the United States and currently is treated with a series of drug therapies, invasive surgery or a heart transplant. Dr. Stefan Jovinge, head of Van Andel Research Institute’s (VARI) Laboratory of Cardiovascular Research, director of the DeVos Cardiovascular Research Program (a joint effort between VARI and Spectrum Health) and medical director of research at the Spectrum Health Frederik Meijer Heart & Vascular Institute, leads an innovative research program that aims to understand how the human heart might one day be able to repair itself.

Dr. Stefan Jovinge leads ground-breaking cardioregenerative research at VARI.

Why are individual donors important to your research?I appreciate the contact with donors. Their stories are the greatest motivation to us and are needed to understand and energize our efforts to find cures for heart disease.

Teaching the TeacherFor more than eight years, the Out-of- School-Time Cohort Program has served as a laboratory for teaching science to young students. Throughout the program, staff observes students, tests instructional strategies and refines the VAEI community of practice model in order to better instruct teachers.

“Teachers who progress through VAEI’s programs implement what they’ve learned into their own curricula, impacting thousands of students,” said Jim Nicolette, associate director of VAEI.

VAEI’s model for scientific inquiry and instruction is known as QPOE2®

(Question, Prediction, Observation, Explanation and Evaluation), and it instructs educators to teach students to think and act like scientists. Students in this model are empowered to learn science by asking questions and designing investigations rather than memorizing facts out of a book.

Inspiring Future Scientists Participants in the cohort program experience the teaching model firsthand, and they love the hands-on approach. A group of students recently completed their time in the program, which culminated in scientific presentations in front of family, friends and VAEI staff.

Students reported on the techniques and data of scientific investigations ranging from animal physiology to DNA and genetics.

“I really wanted to see it glow,” said DJ Arnold, a recent graduate of the program who investigated what type of bacteria can make DNA glow in the dark. Now that he’s completed the program, DJ has ambitions to become a doctor or scientist, so more experiments are in his future.

Thanks to the success of the cohort program more students like DJ are learning to love science.

HIGHLIGHTSof HOPE


Laboratory of LearningYou Can Sponsor the Scientists of the Future!

Van Andel Education Institute’s (VAEI) Out-of-School-Time Cohort Program is a valuable experience for hundreds of students thanks to the generosity of donors like The Rottman Family Charitable Foundation, which has funded 12 students per year for the past two years in memory of Dr. Fritz Rottman, an early and instrumental VAEI trustee.

Students in the Out-of-School-Time Cohort Program examine the results of a scientific investigation.

DJ Arnold puts the finishing touches on his poster presentation, which marks the completion of his three-year commitment to VAEI’s Out-of-School-Time Cohort Program.


“VAEI’s Science Academy fosters the joy of scientific discovery, equipping the next generation to uncover nature’s unending mysteries.” – Doug Rottman

Causing a Transformation When Patti Richardson, a science teacher at Forest Hills Central High School, learned about VAEI’s program, she was intrigued by the chance to do research in a laboratory.

“I wanted my classroom to reflect how science is done outside of school,” said Richardson.

Richardson had previously attended professional development at VAEI and

really liked the inquiry-based approach to teaching science. She found the opportunity to work closely with VAEI staff invaluable.

“My classroom has become a more collaborative environment,” said Richardson. ”I spend a lot less time talking to my students from the front of the room. I have learned to let my students take risks and not feel that I have to tell them everything.”


Transferring the Lab to the Classroom

Patti Richardson is a high school science teacher who has completed Van Andel Education Institute’s Partners in Science program.

Many high school and middle school science teachers haven’t spent time in a laboratory conducting research, so it’s challenging for them to create a lab-like environment in the classroom. Van Andel Education Institute’s (VAEI) Partners in Science program provides invaluable experience to teachers by placing them in a research lab at Van Andel Institute for eight weeks for two consecutive summers. Participating teachers receive both laboratory experience and professional development training and learn how to transfer their lab experience to the classroom. You Can Help

You can help transform classrooms and inspire students to love science with your support of the Partners in Science Program. With additional funding, VAEI can enroll more teachers in the program and impact more students.

Additional funding also gives teachers the opportunity to specialize in their area of focus at other research institutes and universities, allowing a physics teacher to conduct physics research and a chemistry teacher to work in a chemistry lab.

HIGHLIGHTSof HOPE


A BIG ‘THANK YOU’ TO COUNTRY STAR FRANKIE BALLARD AND B-93.7 FM! Van Andel Institute (VAI) and Purple Community would like to thank B-93.7 FM, the nation’s leading country station and largest FM signal, and country music star Frankie Ballard who returned to Kalamazoo’s State Theatre in December for a sold-out Christmas concert benefiting VAI.

Ballard acknowledged VAI’s fight against cancer before a packed audience, encouraged donations and announced that 100% of proceeds would be donated to VAI for cancer research.

Join Frankie Ballard and B-93.7 by hosting or organizing a Purple Community event. Contact a Purple Community coordinator today at [email protected] or by calling 1-84-GO-PURPLE (844-678-7753).

Frankie Ballard’s Country Christmas at Kalamazoo’s State Theatre raised funds for Van Andel Institute.

Michigan Students Punt, Pass and Kick Funds toward Cancer Research The pride of the Otsego community in West Michigan found inspiration in Van Andel Institute’s Purple Community, and helped raise nearly $20,000 for cancer research by involving their entire town in school athletic competitions.

“Each year we’ve added something new to create a bigger impact for cancer research,” said Holly McCaw, Otsego Public Schools communications director. “This year, we invited the whole community to attend athletic events throughout the week and to help us support Van Andel Institute’s research efforts.”

One of those individuals who wanted to help is Jack Pfeiffer, a 2013 Otsego graduate and cancer survivor who served as emcee of the week’s main event - Friday night’s football game.

“Jack shared his cancer story and led our crowd in honoring fellow cancer

survivors who work at our school,” McCaw added. “It was a personal touch and made each of us think about how cancer has affected our own families and our school family.”

According the McCaw, including residents and business owners within the community had a tremendous impact and should be duplicated in other communities interested in supporting Purple Community. Residents placed lawn signs in front of their homes and then packed the bleachers at over a dozen athletic events throughout the week. Businesses provided sponsorships and spectators purchased purple t-shirts, bracelets, beads and lanyards to raise money.

Fans also sponsored purple uniforms featuring the names of loved ones who had been affected by cancer.

“It was a very touching and visible way to honor individuals in the community who were impacted by cancer,” McCaw said. “We wanted parents, teachers, students and even the opposing teams to be inspired by the fact that each dollar is going to research that might impact the life of someone sitting next to them.”

Following Purple Week, students delivered a check for $19,123 for research at Van Andel Institute and attributed Purple Community and VAI’s mission with strengthening the community’s bond while raising awareness.

Public Schools Rally Community to Support VAI’s Mission

Otsego High School students visit VAI and sign their donation check following the school’s Purple Week.



Metro-Detroit Event Aids Promising NF-1 Research Raising money to find a cure is often sparked by the diagnosis of a loved one. In the case of the Saikalis family from Metro-Detroit, Michigan, an effort to raise funds for Van Andel Research Institute (VARI) began in 2010 when 18-month-old Clara Saikalis was diagnosed with a disorder of the nervous system, Neurofibromatosis Type-I (NF-1).

NF-1 causes tumors along the nervous system with symptoms that include visible bumps and discoloration on

the skin, as well as scoliosis, learning disabilities, vision disorders and epilepsy.

Five years ago, Suzanne and her children, Alexander and Sarah, in partnership with Neurofibromatosis Michigan, launched “Great Steps for NF: a Walk for Neurofibromatosis” to generate research funds and create a support community for those who are struggling with the disease.

Dr. Matthew Steensma and Dr. Jacquelyn Peacock are leading VARI’s research to combat NF-1, and their lab was recently awarded a two-year grant from Johns Hopkins University to conduct clinical studies where they will analyze the differences between malignant and benign tumors. According to Peacock, 10% of NF patients will form malignant tumors, which are highly fatal, while 90% will form benign tumors on the skin.

“We’re closely studying the non-fatal tumors in hopes of learning how to prevent the malignant tumors from becoming deadly,” said Dr. Peacock. “The funds generated by ‘Great Walks’

and NF Michigan accelerated our research and laid a foundation for securing grant funding from Johns Hopkins.”

Taking Steps Toward a CureThe progress could not be more rewarding to the Saikalis family.

“We’re so impressed with the progress being made and the passion behind the research at the Institute,” said Suzanne Saikalis. “It provides us with hope that something will be discovered that will make the future less frightening for those with NF.”

Van Andel Institute would like to thank the Saikalis family, Neurofibromatosis Michigan and all the “Great Steps for NF: a Walk for Neurofibromatosis” participants. Your contribution and generosity toward ongoing research is greatly appreciated!

‘Great Steps for NF’ Leads to Clinical Study

Neurofibromatosis Michigan and the Saikalis family present $20,000 to Dr. Jacquelyn Peacock for Neurofibromatosis Type-I research.

Have you considered increasing your impact at Van Andel Institute by combining a current gift with a planned gift?

THE VALUE OF A BLENDED APPROACH TO GIVINGGifts of cash and property help Van Andel Institute further its mission to impact human health. There are many combination gift options available

that can make your giving go further. A blended gift helps you see the impact of giving today while continuing to support the mission in the future.

ENJOY THE BENEFITS OF GIVING TODAYHave you already included a bequest in your will or created a planned gift? You could begin to see the impact of your giving today by making outright gifts of cash or property. Here are some options and benefits to consider:

• Cash gift: Give and deduct the full value of the cash gift this year.

• Real property: Avoid paying capital gains tax by giving instead of selling your property.

• Investments such as stock: Make a gift of your investments for tax savings.

• Personal property, vehicles and jewelry: Transfer unneeded property you can’t sell to Van Andel Institute.

To learn more about how you can benefit Van Andel Institute’s mission, contact us at [email protected] or 616.234.5030.

BLENDED GIFTS MAKE YOUR GIVING GO FURTHER

Walkers participate in the “Great Steps for NF: a Walk for Neurofibromatosis” to generate research funds and create a support community for those who are struggling with the disease.

HIGHLIGHTSof HOPE


The seventh annual Van Andel Institute golf outing had a record-breaking year in 2014! Held at the prestigious Wuskowhan Players Club, and organized by a dedicated planning committee, the event sold out and raised more funds for biomedical research and science education than ever before! Thanks to the Veldheer, Long, Mackay & Bernecker Group for their title sponsorship and continued support of the event.

VAN ANDEL INSTITUTE

Golf Outing



More than 500 guests attended the ninth annual Couture for a Cure event featuring an exclusive preview of designer Kevan Hall’s Spring ‘15 collection. Thanks to title sponsor Amway, guests relaxed in the Artistry beauty lounge while enjoying appetizers, desserts and cocktails. The event raised funds for rare pediatric disease research at Van Andel Institute.

Presented by:

9TH ANNUAL

OCTOBER 9, 2014

Title Sponsor:

HIGHLIGHTSof HOPE


Thanks to perennial title sponsor Fifth Third Private Bank, more than 750 guests enjoyed a night “Under the Big Top” at the 14th annual Hope on the Hill Gala. The Institute was transformed into a circus spectacle that would make any ringmaster proud! The evening featured a strolling dinner and entertainment by the Olate Dogs, winning participants from season seven of America’s Got Talent.



An Epicurean Adventure

AROUND The WORLD

LIVING WITH A RARE CHILDHOOD DISEASE DOESN’T MEAN IT’S RARE When a family receives the news that their child has a rare disease, it doesn’t matter that only a small percentage of people understand what they are going through. All that matters is the health and well-being of their child. In fact, rare diseases are surprisingly numerous—one in ten Americans is affected by one of these conditions. Unfortunately, most rare diseases are severe, chronic, progressive or even fatal. Most have no effective therapy.

SMALL PATIENTS, BIG BATTLESDiseases such as tuberous sclerosis complex (TSC) and aneurysmal bone cysts (ABC) impact children in every corner of the world. Children living with TSC—a genetic disease that causes non-cancerous tumors to form in organs such as the brain, heart and kidneys—can develop epilepsy, autism and developmental disabilities, among other health issues. Aneurysmal bone cysts destroy healthy bone tissue, preventing mobility and causing severe pain in children with the condition.

YOU MAKE THE DIFFERENCEThanks to your support at events such as Around the World, Van Andel Institute can continue to battle devastating diseases like TSC and aneurysmal bone cysts by contributing to the development of innovative therapies that improve the quality of life for children. You have the opportunity to support the work of groundbreaking research scientists such as Dr. Jeff MacKeigan, whose Pathway of Hope research initiative aims to change the way TSC is treated in the future, and Dr. Matt Steensma, who recently developed a new treatment for aneurysmal bone cysts in his pediatric patients.

You’re invited to join the J-Board Ambassadors of Van Andel Institute to taste over 50 wines and sample cuisine from all around the world and help us make a difference in the lives of children battling rare diseases.

Friday, November 14, 20146:00 PM - 9:00 PM

The Ballroom @ CityFlatsHotel77 Monroe Center St. NW | Grand Rapids, MI 49503

Valet Parking Hip & chic attire encouraged

TicketsHaute Cuisine Sponsor // 5008 tickets to the eventComplimentary valet parkingRecognition on all event print materials

Fine Wine Sponsor // 2504 tickets to the eventComplimentary valet parkingRecognition on all event print materials

Individual Tickets // 50A portion of the ticket price is tax deductible.

Register online at www.vai.org or contact Sarah Murphy Lamb [email protected] or 616.234.5712

Brought to you by Proceeds benefit

Ambassadors Innovate.Become a Legacy. Inspire.

Fine Wine Sponsors

Heidi & scott campbell

Rachel & mike mraz

Brewery Sponsor

Van Andel Institute’s J-Board hosted more than 100 guests at their annual fundraiser at the CitySēn ballroom featuring more than 50 wines from around the world. Guests enjoyed an eclectic variety of food and wine while learning about tuberous sclerosis complex, a rare disease being studied at Van Andel Institute.

Carol Van Andel welcomed more than 150 Institute friends and supporters to an informative and inspiring luncheon featuring leading neurodegenerative disease researchers and clinicians. The event was emceed by WOODTV 8’s Diane Kniowski who has a personal connection to neurodegenerative diseases. Van Andel Research Institute scientists Dr. Patrik Brundin, Dr. Darren Moore and Dr. Jiyan Ma presented updates on their work regarding Parkinson’s disease and other neurodegenerative diseases.

Cancer survivor Lyssa Kukla demonstrated courage and bravery when she returned to the Midland County Fair this past summer to competitively show her lamb a short 14 months after being diagnosed with osteosarcoma.

Osteosarcoma is the most common bone cancer in children. It often requires amputation – which was the case

for Lyssa – who competed from her wheelchair after losing her right leg.

“Lyssa has never let anything stop her from doing something she loves to do,” said Lori Kukla, Lyssa’s mother. “Her cancer caused her to miss the fair once, but I knew it wasn’t going to keep her away for a second year.”

Overcoming Physical ChallengesLyssa’s desire to compete served as a powerful motivator through recovery and rehab despite the physical disadvantages.

“While recovering, Lyssa was stuck in bed working on as many 4-H projects as she could,” said Lori. “When she was able to gain some mobility, she took off and didn’t look back.”

Lyssa began preparing for the beginner showmanship class competition after doctors informed her that the cancer was in remission. Practice sessions were aided by her friends who also

pushed Lyssa’s wheelchair during the competition.

“Lyssa couldn’t hide her smile despite the wheelchair, even when her lamb was acting stubborn,” said Lori.

Raising Money for ResearchLyssa’s lamb was sold in the fair’s livestock auction after the competition. The Kuklas donated the proceeds to Dr. Matthew Steensma, head of the Laboratory of Musculoskeletal Oncology at Van Andel Research Institute, to support his research on osteosarcoma.

Thank you, Lyssa, for providing an inspiring story of hope and for supporting cancer research. Learn how you can support cancer research at Van Andel Institute by contacting [email protected] or 616.234.5030.

333 Bostwick Ave NE Grand Rapids, MI 49503

Lyssa Kukla, 9, returned to the Midland County Fair this summer to compete in the beginner showmanship class. Kukla is a cancer survivor who was diagnosed with osteosarcoma in 2013.

Defining ‘Baa-ravery’: 9-Year-Old Cancer Survivor Donates Auction Proceeds to Van Andel Institute

Name: ________________________________________

Address: _______________________________________

City: _______________________ State ____ Zip_______

Phone: ________________________________________

Email: _________________________________________

$250 $100 $50 Other Amount $________

Check Please make payable to Van Andel Institute

Credit Card Please circle one MasterCard AmEx Discover Visa

Credit Card Number: _____________________________

Expiration: ___________________ CVV: ____________

Signature: _____________________________________

Please repeat my gift monthly. (Credit card required)

Yes! I want to support life-saving research and innovative science education at Van Andel Institute.

Photo courtesy of Midland Daily News

van andel institute's highlights of hope february 2015

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