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TDSN NewsletterThe official newsletter of the Triangle Down Syndrome Network

November/December 201

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A WALK IN THE PARK 2015 Buddy Walk draws another big crowd on a gorgeous fall day in Raleigh

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FROM THE PRESIDENTJerry HigginsTDSN Board President

Help us shape the future of TDSN

Every year my family looks forward to the Buddy Walk. It’s wonderful to see friends we haven’t seen during the

year, as well as speak to area newcomers who have just learned about TDSN and want to learn more about what we do.

I love telling people about TDSN. I take great pride in sharing our suc-cesses, our challenges, our wants and our needs. Most of those conversations are met with great enthusiasm and, in some cases, follow-up discussions and eventually action.

When I share stories about the Buddy Walk, part of that is explaining that the event is our largest fundraiser. All funds raised help pay for the programming we provide and events during the year. It also helps pay for the salary of our great program director, Lindsay Tipton.

We’ve had great fundraising years where the Buddy Walk brought in over $120,000. During that time, we were able to create a paid program director position. But, when we fall short of our goals, the Board has to evaluate TDSN’s expenses.

When the majority of the current Board came together a couple of years ago, it’s safe to say TDSN was at a crossroads. We needed to come to a consensus on just what TDSN is all about as there were serious philosophi-cal differences — advocacy vs. advice, family support vs. promotion of our favorite businesses — that divided us but never, ever in any disrespectful way.

Those discussions will take place again this winter. Even though we had more than 1,200 show up for this year’s Buddy Walk, the fundraising again fell short of our goal. While we set a very aggressive goal of $150,000, we did not break the $90,000 mark.

I want to thank everyone who worked hard to raise funds through their Buddy Walk pages and by other means. I really want to thank our sponsors for stepping forward once again. Without their sup-port, it would be scary to think where we’d be.

But, it’s safe to say the Board will have to take a close, hard look (more than normal) at our programs. Priori-tization will be a key and the Board always appreciates your input on what you feel is important and events you feel aren’t as important.

The Board is exploring the creation of a long-overdue TDSN Strategic Plan. This plan will assist us in our decision making, how we need to market TDSN and how we can better use social media to get the word out about us. More exposure could equal more fundraising, which means more programming.

For families who did attend the Buddy Walk, please continue to take a look at the TDSN Endowment, a great way to contribute monthly so we can continue our mission to help Triangle families and individuals with Down syndrome. Please contact Lindsay for more information or she can send you a form with more information.

The Board is looking forward to getting to work on our exciting future. Let us know where you think we need to go.

Jerry HigginsTDSN Board President

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 google.com/groups and search for TDSN. Click to subscribe to the group and your request will be sent to the moderator. If you have not joined, please visit www.tdsn.org to subscribe to the Newsletter.

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

SOCIAL MEDIA (click to view pages)

FACEBOOK/TriangleDownSyndromeNetwork

TWITTER/triangleDSN

INSTAGRAMtdsnpics

PINTEREST/triangledownsyn

Keeping UPwith the Program

How is it possible that we are al-ready at the last newsletter of the year? We’ve got another year and another Buddy Walk in the books!

Thank you to each and every one of you for your support. Every dollar raised, every email sent, every hour volunteered is necessary in order to pull off this event. I certainly could never do it alone. An especially huge thank you to the 2015 Buddy Walk Committee and the newly formed TDSN Fund-raising Committee. They put in many hours and collaborated on many new ideas to make this event successful. You are all greatly appreciated!

While the work for this year is com-ing to an end, it won’t be long until we are hard at work for next year’s event. If you would like to join our team, please contact me at lindsay@triangle-downsyndrome.org.

While preparing for the Buddy Walk, we also kept up with our pro-grams for individuals and families. The annual Fall Harvest Dance, co-hosted with Raleigh Parks and Recreation, was a success. It was great to see so many familiar faces and meet many new friends as well!

The Learning Program kicked off for the second year. We are excited to welcome back all 3 of our teach-ers from last year, and a few familiar volunteers as well. We could use a few more volunteers, so if you or someone you know is willing and able to give a few hours to TDSN on the third Sat-urday of each month, let us know! We have 12 eager young children and their parents hungry for information and we are ready to give it to them! At the end

Program DirectorLindsay Tipton(919) 803-0515

Blue Ribbon Baker

Josi Ferguson won a blue ribbon at this year’s fair for her Nonna’s fudge recipe and a red ribbon for her grandmother’s ice box cookie recipe. Congratulations, Josi!

November Emma AdamsCaroline Grace BallShayla BassThomas BeckmannIan BolenaJuliet BolingerAmanda BrameMark Hosea BruehlLela CarrollTreyvon ClarkWallace CrollRyan CroninCharles DieselJeremy DonohueRobert DurhamTimmy GaethSydie GarrettHarper HansonMary Gray HardyGloria Rotas HernandezAshley HoffmanChrystal HollisterMatthew JacobsenYuutah KadowakiRaina Marie KellyLiam David Kelly

Jackson KoesterJosiah KrausDavid LeperiDevahn McCrayJamie McGheeAlexander McLaughlinCameron McRobbLilah MobleyLindsey PareisImani PetersTyler PlummerTaylor PokemireJanae PorrasReeyan QamarKyle RingerCanaan Luke RogersJonathan ScottMelanie TutkaKyle WallLilly WilsonMichael WozniakGabriel Wright

DecemberDylan AskewMatthew Brandon Bednar

Grace BisonLuke Alexander BraswellMax BridgersDominique BuieKanaan BunnJohn “JB” ByrneAnthony CapozzoliKeylin Grace CielinskiJakob DanzisZoe DavidsonSydney DavisNadia FergusonFranklin FortnerJohn Mark FrederickLilly GirdlestoneMatthew GoodieDezrae JacksonElizabeth JohnsonAddison JohnstonAndre KearneyDerek KingstonMekhi LayAllison ListerJonathan LooneyKate LyonBeth Morgan MacdonaldJoseph Marinelli

Sara MartinezHarrison MatthewsAnna McKinneyEliana NelsenCameron OutlawTravis PriceLaila RenickJasmine RoaKevin RochamRachel SikesMcKayla SimmonsJoel SmithPranoy SolomonSimon TempleGrayson TolerSean Willow WalsbyMaggie WardCameran WatkinsAnna WellsGabriel WhickerStacey WhitfieldJustin WhitleySavanah WimberleyJacob Wooten

HAPPY BIRTHDAY!

CONTINUED, PAGE 9

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Oct. 11 was a beautiful day — not only the weather, for which we were all so thankful, but the smiles on each face, the love in each embrace and the triumph in each step were all just beautiful.

The Buddy Walk is first and foremost a fundraiser for the Tri-angle Down Syndrome Network. We are happy to have passed the revenue from last year’s Walk, bringing in around $90,000. Thank you to each of the indi-viduals and teams who worked to raise money for TDSN so that we may better serve each of you along with new families who will join us in the coming year.

In addition to raising funds for our organization, the Buddy Walk serves to raise awareness and celebrate abilities. And that we did. With several new groups joining us as volunteers, new community members joining us through relationships with each of you and employees joining us through business sponsorships, hundreds of people learned on Oct. 11 that Down syndrome can be something to celebrate. There are struggles, yes, but there are also moments of pure joy and pride as obstacles are overcome, milestones are reached and the impossible becomes possible right before our eyes.

Thank you to all who joined us to raise funds, awareness, and to celebrate. We hope you continue to celebrate with us throughout the year!

A DAY TO SMILE AND CELEBRATE2015 BUDDY WALK

Photos by Patricia Meszler

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GiGi’s Mock PlayhouseSunday, November 8th

2:00-4:00 pmPrimrose School at Hope Valley Farms

702 Juliette Dr, Durham, NC 27713

COME OUT AND JOIN US!

WHO SHOULD ATTEND?

Learn about what GiGi’s Playhouse Raleigh is bringing to your community. The Mock playhouse is a chance for you to learn about all of our programs and the ways you can get involved!Children are welcome, kids will participate in activities led by volunteers while parents learn. Refreshments will be provided.

Please email Caroline at Cmoore@gigisplayhouse.org

• Parents and family members

• Individuals with Down Syndrome

• PT/OT/Speech and behavioral therapist

• Educators and early interventionists

• Others who work with individuals with Down Syndrome and other disabilities

• All media

• EVERYONE IS WELCOME

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of September, I participated in a consul-tancy protocol with the Wake County Public School System and Advocates for Inclusive Education. It was a wonder-fully pleasant way to begin a necessary and at times difficult discussion around Least Restrictive Environment.

I look forward to continuing work on this project and will keep you updated as we chip away at this huge topic that is critically important to so many of our families. In addition to those unique opportunities, we had several chances for individuals with Down syndrome and families to connect, including a TDSN Tots outing, a Halloween movie night with the BRICK crew, family sup-

port around anxiety, and more! There’s plenty more where that came from, so don’t forget to check out the calendar section of this newsletter to and mark your own calendars for upcoming events.

Looking ahead to 2016, the TDSN Board is excited to begin work on a long overdue strategic plan. So, what would you like to see in “Keeping Up With The Program” next year? What would you like to see TDSN work on, what direction would you like to see us move? We are here for you, so your feedback is instrumental in making this planning a success. What are your hot topics? What hurdles does your family face with which TDSN could offer support? Education? Advocacy? Socialization?

Transitions? There are many hurdles that present themselves throughout the lifespan and it is our goal to make them more manageable for your entire family. Please send any feedback and/or sugges-tions to me at lindsay@triangledown-syndrome.org.

As always, thank you for being a part of the TDSN family. I am reminded every day, but even more so on the day of the Buddy Walk, how incredibly for-tunate I am to be gifted with the pres-ence, contributions, gifts and talents of so many wonderful people. Thank you for allowing us to work with you. I wish each one of you a very happy holiday season and look forward to making big steps to serve you better in 2016!

DIRECTOR, FROM PAGE 3

Cameron Woffinden, a 15-year-old Eagle Scout from Holly Springs, chose to focus the efforts of his Eagle Scout project to benefit TDSN.

“I have a younger sister with Down syndrome, and this organization has been a big help for her and my family, so when it was time to find an Eagle project I wanted to be able to give back to them in some way”, said Cameron.

He worked for months consulting with TDSN Program Director Lindsay Tipton on TDSN needs, including visiting the office to assess, measure and plan. He then spent time fundrais-ing and executing his plan. TDSN was honored to receive a children’s table and chairs for small visitors, a bookshelf for new parent materials and a table for brochures and information to be readily available to TDSN visitors.

Cameron has been a Scout since he was 8. We appreciate his work ethic, at-tention to detail and caring nature. We are so thankful to benefit from such a special project.

Scout’s Honor

2 SEAC Open House at 5:30 p.m. at Martin Middle School, 1701 Ridge Road in Raleigh.

7 WCPSS Magnet Fair.

8 Gigi’s Mock Playhouse, 2 to 4 p.m. at Primrose School at Hope Valley Farms, 702 Juliette Drive in Durham.

9 TDSN Board Meeting at the TDSN Office, 1012 Oberlin Road, Suite 300.

14 TDSN Tots.

17 Casino Night Planning Meeting, from 11:30 a.m. to 12:30 p.m. at the TDSN Office, 1012 Oberlin Road, Suite 300. RSVP to rsvp@triangledownsyndrome.org. Lunch will be provided.

17 Parent Support Session (Resource Information) from 6:30 to 7:30 p.m. at Project Enlightenment, 501 S. Boylan Ave. in Raleigh. Child care is available.

18 Mom’s Night Out, 6:30 p.m. at the Masters’ home in North Raleigh.

20 Marbles Family Fun Night at Marbles Kids Museum, 201 E. Hargett St. in Raleigh. Free event!

21 Raleigh Christmas Parade, 9:40 a.m. Contact Lindsay to ride the float.

21 Learning program, 10 a.m. to noon at Colonial Baptist Church, 6051 Tryon Road in Cary. Registration required.

22 Rodan and Fields party to benefit TDSN, 2 p.m. at TDSN Office. Child care will be provided.

NOVEMBER CALENDARUnique volunteer opportunity

with Habitat for HumanityHabitat for Humanity is seeking volunteers to build homes for individuals with intellectual

and developmental disabilities. • WHAT: Wake Habitat for Humanity will be building three homes to house nine individu-

als with intellectual and or developmental disabilities. The project, which is the first of its kind in North Carolina, is a joint venture with Lutheran Services Carolinas, The Serv-

ing Cup, and Habitat Wake. • LOCATION: The building site is on Lake

Wheeler Road in Raleigh, north of its inter-section with Tryon Road.

• WHEN: Construction will start mid-No-vember 2015. Volunteers will be needed on Thursday, Friday and Saturday for approxi-

mately 12 weeks. The typical workday will be from 8 a.m. until 3:30 p.m.

• EXPERIENCE REQUIRED: NONE. Habitat will provide training onsite for the tasks to be

performed each day. The only requirement is that the volunteer be at least 16 years of

age. • HOW TO VOLUNTEER: Register on the fol-

lowing website: http://vhub.at/lakewheeler

From this website you can select the day(s) that meets your schedule.

• ADDITIONAL INFORMATION: Contact Roberta Macauley, Habitat’s Volunteer

Engagement Manager, at roberta.macauley@habitatwake.org or at (919) 744-2417.

This is a great opportunity for groups (of-fice, church, book club, neighborhood, golf, tailgating, etc.) to spend the day together

working on a very worthwhile project. Please notify Roberta by email if your group is plan-

ning to volunteer.

Volunteers needed forDuke University study

This study aims to gain a better understand-ing about differences in brain structure in

children with Down syndrome and how these differences are related to impairments in cognition. As a qualified participant, your

child will undergo psychological testing and a brain MRI.

You will receive a report with all psychologi-cal testing results at no cost to you.

To qualify, your child must be:• Between 10 and 17 years of age• Diagnosed with Down syndrome• Able to see, hear, communicate

and walkYour child will need to be able to complete

the assessments in order to participate. You will need to accompany your child to the

study visit.If you are interested in more information call:

Jane Ann Baker at Duke University (919) 668-4576.

Next Chapter Book ClubsThe Next Chapter Book Club is a national concept that was started by a group out

of Ohio State to introduce individuals with disabilities to the pleasures of a book club.

Participants enjoy an interesting story to read together and discuss, companion-

ship and socialization while offering a great example to our communities that persons

with different abilities choose to enjoy many of the same pleasures that others in the

community enjoy. Facilitator Marlyn Wells said, “I love the friendships that have developed and the

spontaneous support that is shared among the club members.”

During a Next Chapter session a few weeks ago, Dr. Cathy Crossland, professor of special

education and director of the Diagnostic Teaching Clinic at N.C. State University,

happened to be shopping in the store. She stepped in to acknowledge the group and

thank them for their reading. “When I was browsing Quail Ridge Books

(one of my favorite places to spend time), I had the privilege of listening in on the Next

Chapter Book Club meeting,” Crossland said. “I was very impressed with the way the group

was working together and all the sound principles of reading instruction that were

in place. I felt compelled to compliment the group at the end of their session and to let them know how much I enjoyed listening as they read. It turned out to be an opportunity

to meet some new friends who have con-nections to so many teachers and therapists

that I know.”The next chapter book club is looking to start new chapters and seeks volunteer

facilitators. Two groups have been going for several years. One in Raleigh meets at the

Quail Ridge Book Store on Sundays at 5 p.m. (contact Marlyn Wells (919) 270-0679). The Sunday afternoon group meets for an hour,

ANNOUNCEMENTS

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and it includes young adults that have been growing in members for over three

years. The group enjoys reading clas-sics likeTreasure Island (current book) and modern writers like Carl Hiaasan

(Flush, Scat, etc). Everyone is supported by their peers to read with the group, regardless of fluency or reading level.

Another group is centered at Green Level in Cary on Wednesday nights from 6:30 to 8 p.m. (contact Rose Fox (973)

271-0770). To learn more, visit http://www.

nextchapterbookclub.org

1 Giving Tuesday. To learn more, visit http://www.tdsn.org/donations

3 Kindergarten Transition Roundta-ble at 6:30 p.m. at TDSN Office, 1012 Oberlin Road, Suite 300 in Raleigh.

5 Party Pics with Santa, from 1 to 5 p.m. at Good Shepherd Lutheran Church, 7000 Creedmoor Road.

10 Adventure Club Christmas caroling with TOCS, 6 p.m.

11 Mom’s Night Out, 6:30 p.m. at Alberques’ home in Raleigh.

14 TDSN Board Meeting, from 6:30 to 8 p.m. at TDSN Office, 1012 Oberlin Road, Suite 300 in Raleigh.

11 BRICK, from 6:30 to 8:30 p.m. at TDSN Office, 1012 Oberlin Road, Suite 300 in Raleigh.

DECEMBER CALENDAR

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Thank you to the 2015 Buddy Walk

Committee!

Kari AlberqueLindsay Tipton

Cyndi TreadwayCathie Tutka

Christy CornellSamantha Crews

Michelle MuchmoreKelly Nestle

Claudia BehmLori Walker

Thank you to the TDSN Fundraising

Committee!

Beth LaPierreGreg Burnsed

Christina BrewerKari AlberqueLindsay Tipton

Kevin GriffinBecky DallasTara Moore

See you at nextyear’s Buddy Walk!

Saturday, January 16th 10:00-11:30 am

TDSN Office Presents

Financial Strategies for Families of Children with Special Needs

Presented by

M. Sean Godwin

The one question that keeps many families up at night is “What’s going to happen to my child when I am not around?” If you are part of this group, please attend this presentation.

Topics will include: Common Mistakes

Wills / Trusts / Special Needs Trust Guardianship

Letter of Intent Beneficiary Designations

About the Speaker

M. Sean Godwin has presented on this topic around the state of NC to over 50+ schools, support groups, and companies. He has served on the Board

of the Mariposa School, Wake County Autism Society, and previously served as Board President of the Triangle Down Syndrome Network.

8816 Six Forks Road, Suite 301

Raleigh, NC 27615 – (919) 719-3849 – sgodwin@capfs.com

www.SeanGodwin.net Your attendance at this event does not obligate you to purchase any products. At the conclusion of the seminar, representatives of the firm will be available to make appointments to review individually the products and services they offer. Registered Representative/Securities and Investment Advisory Services offered through Signator Investors, Inc., Member FINRA, SIPC, a Registered Investment Advisor. 8816 Six Forks Road, Suite 301, Raleigh, NC 27615. 919-546-0400. 201-20140130-171692

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We are looking for children to take part in a clinical trial involving 10 visits over 9 months. We will be testing a new investigational medicine to see if it will help children with Down syndrome with learning, memory and performing normal daily activities. We don’t know yet if the new medicine will work.

Does your child have Down syndrome?

Is your child between 6 and 11 years old?

Contact usPlease contact us if you are interested or have any questions.

Thank you for your interest.

WP28760_Poster 3_Advertising Text 1_Version 1_02/07/2015_Kishnani

Jane Ann BakerDuke University Medical Center, DUMC 103857, 905 S La Salle St, Durham, NC 27710janeann.baker@duke.eduTel +1 919 668 4576 Fax +1 919 668 0414