TDSN NewsletterThe official newsletter of the Triangle Down Syndrome Network

JULY/AUGUST

Get ready to walk!Learn more about how you can help usmake Buddy Walk our best yet this year

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FROM THE PRESIDENTJerry HigginsTDSN Board President

Our success hinges on your fundraising efforts

As a parent of a son with Down syndrome, I know change is difficult. Transitions can be challenging, and

it’s so much easier to deal with the status quo.If you’re reading this, you are looking at

a “change agent” for the Triangle Down Syndrome Network. This is the first issue of the “paperless” TDSN News. It looks a bit different but is still filled with great informa-tion for our families about the great things happening with TDSN. Please let us know what you think about the new look, as well as pro-vide information we can share with our families.

The organization is also undergoing changes — the biggest being we’ve moved to a new loca-tion. I have always been a major proponent of TDSN moving our events around the Triangle to give everyone an opportunity to attend, but I’ve also felt we needed to be located in Raleigh. Thanks to the hard work of Program Director Lindsay Tipton and board member Beth Lapierre, our office is now located on Oberlin Road near Cameron Village and is large enough where we can hold family support meetings.

These changes could not take place without the support of you, your friends and families and businesses. Here’s where the more things change, the more they stay the same. And this means — here comes the request: We need your help!

The Buddy Walk is our major fundraiser, and we thank all of you who have been part of the record-setting attendance numbers over the past couple of years. However, atten-dance numbers have not equated to fundrais-ing numbers, and that is a major concern to the TDSN Board.

Our registrations have been up as our attendance has gone above the 1,200 number. Here’s where things have gone askew — many people who have registered to attend have not created fundraising pages to supplement the registration fees, and this lack of fundraising may hit TDSN where it

hurts — programming.Anyone who has read my letters in the

past has seen my bottom-line statements that without funds, TDSN may be unable to continue great programs or bring in guest speakers from out of state. Our day-to-day operations hinge on monies raised at the Buddy Walk, grants and other sources. Last year we were fortunate to find grants for several programs. This has not been the case this year.

So, as board president, I want to present a challenge for everyone who registers to attend the Oct. 11 Bud-dy Walk at Spring Forest Road Park in Raleigh. If we get 1,200 people to register and each person sets up a fundraising page and raises

between $250-500, that would bring in anywhere between $300,000 and $600,000. Heck, raising $100 a person would bring in $120,000, and that would constitute a fantastic fundraiser.

I don’t mean to be a “Debbie Downer,” but this is the reality and difficulties non-profit organizations like TDSN face every year. So, let’s not only make this year’s Buddy Walk the best we’ve ever had, but let’s all pull up our bootstraps together and raise funds so TDSN can continue to provide quality sup-port to all of our families in the Triangle.

Saying Good ByeTDSN has lost a dear friend and supporter

as Wendy Davidson and her family are mov-ing to Chicago so she can be with her brother. Wendy has worked in our office and has been a tireless Buddy Walk worker. We’ll miss her and wish her and her family the best.

We also lost a friend and supporter in Brad Rudolph. Many of you may not know Brad, but he and his company, Custom Mail Solu-tions, printed our newsletter and other items.

Brad died unexpectedly on June 9 from a brain aneurysm. We pass our condolences to his family.

Newsletter The TDSN News is published bimonthly

online. We currently have approximately 900 email subscribers.

For email subscriptions, please visit: www.TDSN.org or TriangleDownSyndrome.org to set your delivery preferences. Contact the office at (919) 803-0515.

Advertising/SubmissionsTDSN accepts advertising from companies

and organizations that align with our mission supporting families of children with Down syn-drome. Contact the office for advertising rates and policies. The deadline for submitting ad-vertisements is the first day of even-numbered months for the following issue.

Submissions are due by the 10th of even-numbered months. Any information received after that date will be considered for the next newsletter. (Contact info below)

Talk BackJoin our Email Support Group-a place to

chat with other members, ask questions, share successes and challenges, offer advice, as well as post pictures of your family. Please visit the following link to join the conversation: TDSN YahooGroup (http://health.groups.yahoo.com/group/TDSN/).

If you have not joined, please visit www.tdsn.org to subscribe to the Newsletter. If you are in the Fayetteville area, there is a discussion group for that area as well. Join using this link: FADSN YahooGroup (http://health.groups.yahoo.com/group/FADSN/)

Contact UsProgram Director: Lindsay TiptonInformation line: (919) 803-0515Triangledownsyndrome.org or TDSN.orgMailing Address: PO Box 37505 Raleigh NC 27627Street Address 1012 Oberlin Road, Suite 300

Raleigh, NC 27605

Board of DirectorsPresident: Jerry HigginsVice President: Stanley MonkTreasurer: Bill ZahnSecretary: Tara MooreBoard: Nick Dozier Kevin Griffin Barb Kocher Beth LaPierre

“If we get 1,200 people ... to raise

between $250-$500, that would bring in between $300,000

and $600,000.”

SOCIAL MEDIA (click to view pages)

FACEBOOK/TriangleDownSyndromeNetwork

TWITTER/triangleDSN

INSTAGRAMtdsnpics

PINTEREST/triangledownsyn

Keeping UPwith the Program

It has been exciting to watch our organi-zation grow through our added program offerings, but it is also so much fun to

watch individuals, parents and families grow and friendships form and flourish. Additional opportunities to meet and get to know the families we serve is not only fun, but allows us to better know and under-stand needs so that we may plan appropri-ately. If you have not yet joined us, please consider doing so! Check out what we’ve been up to and what we have planned.

• Our picnic in May was a huge success, thanks to a wonderful location and beauti-ful weather. Thank you to all who came out. It was great to visit with so many fami-lies, and fun to meet so many new babies!

• Our programs continue to seek adven-ture around the Triangle area. The TDSN Tots recently enjoyed a morning at Kidzu in Chapel Hill, complete with a You and Me Yoga session with Yogajoy. We’re looking forward to a gymnastics session in August. Stay tuned for details!

• The Learning Program just wrapped up, and we are pleased to present our inaugural year graduates — both students and their parents. Many thanks to BP Fuel-ing Communities, Leadership Trust and Pricewaterhouse Coopers for their generous funding making this program possible. We are working to secure funding to continue for next school year. Stay tuned for registra-tion information to come, as well as a social outing for the 4-7 year old age group over the summer.

• Adventure Club had fun on the green in May with a putt putt session at Adven-ture Landing. At the end of June, they got together to swim with Sensation Nation. Both were great experiences that offered learning and socialization while building

Program DirectorLindsay Tipton(919) 803-0515

Photo shoot July 10-11

Patricia Meszler PhotographyOur next photo shoot with Patricia Meszler Photography will be from 5 to 8 p.m. on July 10 and 7 a.m. to noon on July 11 at WRAL Gardens, located at 2619 Western Bldv. in Raleigh. Sessions cost $150, with $125 of that benefiting TDSN programs.

JULYBailey Cole AllenGary BennhausenDeon BriscoAlex BrooksRa-del BrownSheri CampbellJason CervantesEthan CheuvrontIsabella CiescoJames Matthew ColeyAustin CrankSeth CrudupSeth CrudupDarcy Martin del CampoRonan Diaz-SanchezKyle DinhByron Dumon-AkersCarly FitchNicholas FlanaganJennifer FloydGavin Liam FradelScott FriskC. Eric GarrettGianna GiambalvoFrank JohnsonGray JourdanMayzie Kelley

Christopher KlemJordan McDuffieKira MillerMason Gregory NealElijah Luke NewmanOzias Ozzie NiblockValerie OdodaJustin QuinonesBen RichardsJuan Pablo RodriguezEthan SchmiederErika Leigh SheltonAndrew StephensonWyatt TaylorCoby ThompsonEmily WallJordan WigginsMarcus WilliamsMario WiltshireAva WoodardAbigail WrightCarly YoungMary Kathryn Zinn

AUGUSTSarah AustinGaron BaggettDrew Barefoot

Faith Joanna BettexFaith BoydLucas ChmieleckiVeronica ChristianElla CitroEvan CokesCaroline CookBrittany DavisMieke deBlooisJamie DobinsonMatthew EbkenBenjamin EllisJoseph Cole EzzellSophie FaisonEleanor Mary FloraTristan HembyHazael HernandezVictoria HouleBriana HubbardEli IngramSummer JacksonAsher JohnsenDerek Johnson, JrRawley KabrickNathan Kirkwood-MillerGrace Marie LeetchLily Samantha LoweryCarter Lustig

Bronson ManningShea McCaffreyMarisa McDonaldMark MorrisonJaden NgShane OglesbySarah O’MalleySophie PacynaMick ParkerClaire Midori PuramJ.T. ReaLindsey ReavisAlejandro Rivera-PortilloNicholas SalcedoDavid SalinasBrett SchnitzleinIan Scott SmithNicholas SpannTyler TassoneLesPriest TurrentineMatthew TussingJohannes WeinertLiam WhiteDoychin WojcikHannah WoodyBenjamin WrightThomas Zahn

HAPPY BIRTHDAY!

CONTINUED, PAGE 6

Last year’s walk drew record crowd of 1,500

participants; registration begins July 31

Heading into their first Buddy Walk in 2014, Todd and Emily Rich-ards felt it was only right to give back to

the organization that made their first year with a child with Down Syndrome easier and more rewarding.

So the Richards called on family, friends and his co-workers at Pricewa-terhouseCoopers to help them support a good cause. Rarely did they have to ask twice.

“We don’t deserve any praise,” said Todd, whose son Ben will turn 2 in July (the couple has two other sons, Parker, 7, and Emmitt, 4). “So many people who love this child jumped at the chance to give and get involved. We were shocked.”

The Richards were the top-fundrais-ing family for last year’s Buddy Walk and are already planning for this year’s event. The 17th Annual Triangle Down Syndrome Buddy Walk is the organiza-tion’s largest fundraising event, says TDSN Director Lindsay Tipton, and this year’s Walk is scheduled for 1 to 4 p.m. on Oct. 11, at Spring Forest Road Park in Raleigh. The Walk was estab-lished in 1995 by the National Down Syndrome Society to celebrate DS Awareness Month and to promote ac-

ceptance and inclusion of people with Down syndrome.

For TDSN families, the event is “their Christmas,” Tipton said, “as we see so many families come from all over the state and out of state to not only celebrate, but become part of a growing community of families who face similar joys and struggles of raising children with Down syndrome.”

Last year’s Walk drew a record 1,500 people and a similarly large crowd in

BUDDY WALK RETURNS OCTOBER 11COVER STORY

REGISTER ONLINEBEGINNING JULY 31!

LEARN MORE ONLINE ATwww.triangledownsyndrome.org

2013. TDSN’s numbers fall in line with national attendance as more than 315,000 people nationwide partici-pated in more than 250 events across the country and world.

“Just to be able to feel the power of our numbers … it’s incredible,” Rich-ards said. “Our son was barely 1 last year, but through Buddy Walk we got to meet and get to know families with children of all ages. It showed us that the future for us is really exciting. The first few years can be difficult, but here we’re seeing older kids running around with huge smiles on their faces. It puts you at calm. Yes, we’ll have struggles, but there’s a bright future. The joy is hard to put into words.”

The theme for this year’s Buddy Walk (which is more of a “family fun day” than actual “walk”) is the carnival, so expect carnival food, carnival games and carnival prizes, Tipton says.

Registration begins July 31. Deadline for early registration is Sept. 11 (early registration guarantees a T-shirt in your size).

*Available in Men’s and Women’s

certificates must be redeemed within 4 weeks of receipt.

$250Stainless Steel Water Bottle

or Rope Tote

$5,000Sun Shelter

$1,000Fleece Jacket* or

Pieladium Bluetooth Speaker

$500Hooded Sweatshirt or

Vacuum Tumbler

$7,500Blaster Bluetooth Speaker

$1,500Sweater Fleece Jacket* or Hydration Backpack

$750Daypack or

Designear Headphones

$2,500Softshell Jacket* or

Wheeled Duffel

2015 Recognition Program

community skills at the same time. Sensation Nation is working with us again in August to provide a gymnastics session. Many thanks to Sensation Nation for their support.

• BRICK met at the end of June to learn tips for obtaining and maintaining employ-ment. Teens had an opportunity to learn, practice and share experiences with our presenter, Susan Swearingen from The Arc of the Triangle. We will meet again in August to work on safety tips, including internet safety, trusted adults and safety around the house.

• We are looking forward to an evening out at the movies with the Trailblazers in July. Check the calendar for more information. We hope to see many of our adults joining us for a movie, some snacks and fun with friends. Feel free to bring a friend!

• In a continuous effort to support families, Dr. Melissa Johnson presented to our parents in May to provide tips on the ever challeng-ing topic of potty training. More than 20

parents were in attendance, taking in great information from not only our talented presenter, but from one another as well. Networking is one of the greatest perks of our support meetings!

In an effort to maintain these programs, our fundraising work is in high gear. As Jerry stated, we are working hard to make this a successful Buddy Walk — not just in attendance but in fundraising as well. In ad-dition to our Buddy Walk, we are excited to announce our new fundraiser, the TDSN Ca-sino Night on March 19, 2016 at the RDU General Aviation Terminal. Please mark your calendars now! If you are able to help with planning or acquisition of silent and live auc-tion items, please contact me!

We would like to thank the community for their help with fundraising. Lafayette Village generously hosted a Wine Walk in May to benefit TDSN. In a little more than two hours, we raised over $1,000! Thank you so much to all of you who came out that night. It was great fun!

To date, our spring fundraiser has brought in $8,500. Thank you to all who made a contribution! This annual campaign is a big piece of our budget. If you have not yet sent in your donation, there is still time! You can mail a check or donate online at www.tdsn.org/donations.

Lastly, it is with great sadness that we said goodbye to Wendy Davidson, TDSN’s Tech-nical Assistant, at the end of June. Wendy has made countless contributions to TDSN over her time with the organization. She has been a dedicated employee, always thinking of new ideas and supporting whatever programs we were working on.

I always found it funny when she referred to me as her boss, because she was the one to train me when I started a few years ago. She’s been a wonderful friend, a confidante, a shoulder to lean on and an honest wall off of which to bounce ideas. Wendy has left a last-ing imprint on TDSN and we are better and stronger as a result of her work. She, Zoe and Mark will be missed as they move to Chicago to be closer to family.

DIRECTOR, FROM PAGE 2

Special Olympics StampThis year, the U.S. Postal Service® celebrates the 2015 Special Olympics World Games, the flagship event of the Special Olympics movement. The Games will be held in Los Angeles from July 25 to Aug. 2. Learn more about the stamp and purchase a book of your own to support the Special Olympics at http://uspsstamps.com/stamps/special-olympics-world-games

Buddy Walk Emcee For the third consecutive year, ABC 11 Eyewit-ness News anchor Heather Waliga will emcee TDSN’s annual Buddy Walk. Pictured above with television star Chris Burke at the 2013 Buddy Walk, Waliga’s little sister Cassie was born with Down syndrome.

Buddy Walk T-shirts T-shirts for the 2015 Buddy Walk are included in your registration price. Adults can save $10 by registering before Sept. 11, and $5 between

JULY

10-11 Photoshoot benefiting TDSN at WRAL Gardens, 2619 Western Blvd. in Ra-leigh; 5-8 p.m. on July 10 and 7 a.m. to noon on July 11.

11 Mom’s Night (Morning) Out at Barry’s Cafe, Swift Creek Shopping Center at 2851 Jones Franklin Road in Raleigh; 9 a.m.

11 Trailblazers (ages 20+) Movies in the Park at Apex Nature Park Amphitheater, (beginning at dusk)

31 Registration for Buddy Walk opens. Visit tdsn.donordrive.com

AUGUST

1 Durham Bulls Family Outing at Dur-ham Bulls Athletic Park, 409 Blackwell Street in Durham; 6:35 p.m. (Game time)

6 TDSN-sponsored Mom’s Night Out and Buddy Walk Kick-off Party at HibernianPub , 8021 Falls of Neuse in Raleigh; 6:30 p.m.

9 Marbles Family Fun Night at Marbles Kids Museum, 201 E. Hargett St. in downtown Raleigh; 5:30-8 p.m.

15 Adventure Club Gymnastics, 10700 World Trade Blvd., #113 Raleigh ; Noon

21 BRICK (ages 13-19) Personal Safety at Cary Family YMCA, 101 YMCA Drive in Cary; 6:45-8:45 p.m.

29 New Member Social at Pleasant Grove United Methodist, 4415 Pleasant Grove Church Road Raleigh; 10 a.m.- Noon

CALENDAR OF EVENTS

INTRODUCING TDSN’S NEWTECHNICAL ASSISTANT

Kari Alberque is joining the TDSN team in the Technical Assistant position.

Kari became involved with TDSN as a volunteer shortly after moving to the Tri-angle area from Boston in the fall of 2013. She lives in Raleigh with her husband Jim and their three children Luke (6), Ryan (5) and Erin (2). Her middle child, Ryan, has Down syndrome.

Kari has worked in the nonprofit sector for over 15 years as a direct care social worker and in nonprofit administration. Her experience as a mom to Ryan and as a social worker have influenced her deep appreciation for the work of TDSN.

She is excited to join the TDSN team!

THANK YOU, ANDREA!Thank you to Andrea Higgins, who for

years served as the editor of the Triangle Down Syndrome Network newsletter. Andrea was dedicated to our organization and the families we serve.

She used her creativity and her pro-fessional background to bring families together, promote events, encourage fund-raising and bring a smile to our faces with her uplifting photos. We appreciate her work and commitment to TDSN.

WE’VE MOVED!The Triangle Down Syndrome Network

is excited to be a part of a collaborative with the Alliance of Disability Advocates/Center for Independent Living. We moved into their office space in Suite 300 of the Interact buildig at 1012 Oberlin Road.

In addition to being a part of a collabori-ate with an organization whose mission aligns with our own, this office space boasts excellent meeting space, allowing opportu-nities for more support meetings and social gatherings. We hope you stop by to see us soon!

While our mailing address remains the same, please note our new physical address:

Triangle Down Syndrome Network1012 Oberlin RoadSuite 300Raleigh, NC 27605

ANNOUNCEMENTS

INDIVIDUALS AGES 6-11NEEDED FOR NON-DRUG RESEARCH STUDY AT DUKE

The purpose of this Duke University Medical Center research study is to identify a set of language, cognitive (memory, atten-tion, thinking) and adaptive function (daily living skills, socialization, communication) measures to use in studies with individuals with Down syndrome.

Participants will complete multiple language and cognitive tests to determine the best set of tests to use in future studies. Caregivers will also complete published questionnaires to identify the best measures of adaptive function.

• The study will take place over a 6- to 8-month period.

• Subjects will attend four to 5 sessions at Duke University Medical Center in Durham, NC, with their primary caregivers.

• In addition to language, cognitive, and adaptive function testing, sub-jects will receive a physical exam.

• Travel costs will be reimbursed.For more information, contact:Jane Ann Baker, MS, CGCDuke University Medical Center919-668-4576Duke IRB# Pro00060240

DEAL FROM JAMBERRYJamberry Nails offers high quality vinyl

nail wraps in more than 300 different colors and designs!

Show your support by placing orders at http://jennifermerritt.jamberrynails.net with 30 percent of sales will be donated to TDSN!

Select TDSN Fundraiser at check out. Contact jennifermerritt19@gmail.com to purchase custom Down syndrome Aware-ness wraps (example above) or for informa-tion on custom wraps for your Buddy Walk Team or to schedule an online, catalog or in home party.

Help us learn more about Down syndromeThe clinical trial will look at which tests are best to use to measure memory and abilities in people with Down syndrome.

Sponsored by

Your child may be able to participate if he/she:

• Has Down syndrome

• Is aged 6-11 years

• Is able to communicate verbally

Jane Ann Baker, MS, CGCGenetic Counselor

Duke University Medical CenterPhone: 919-668-4576

janeann.mckillop@duke.edu

An Institutional Review Board responsible for human subjects research at The University of Arizona reviewed this research project and found it to be acceptable, according to applicable state and federal regulations and University policies designed to protect the rights and welfare of participants in research. IRB# Pro00060240

A SPECIAL NIGHT FOR SPECIAL NEEDS

201 East Hargett Street • Downtown Raleigh • 919.834.4040 • www.MarblesKidsMuseum.org

FOUNDING PARTNER

Sunday, August 9 | 5:30-8pmA free, after-hours program exclusively for kids with

special needs and their families to play in the museumin a calmer, quieter environment.

EVENT PARTNERS

Alliance of Disability Advocates

Arts Access

Easter Seals UCP NC + Virginia, Inc.

First In Families of Wake County

National Inclusion Project

North Carolina Museum of Natural Sciences

North Carolina StatewideIndependent Living Council

Triangle Down Syndrome Network

Triangle Radio Reading Service

WCPSS Special Education Services

Family Fun Night is supported in part by the Office Depot Foundation.

SPONSORED BY

SPRING PICNIC 2015