MAY/JUNE2016 TDSN News

THE OFFICIAL NEWSLETTER OF THE TRIANGLE DOWN SYNDROME NETWORK IN RALEIGH, NC

A CAPITOL SMILE MEET NORTH CAROLINA’S NEWEST LEGISLATIVE INTERN

NEWSLETTERThe TDSN News is published

bimonthly online. We currently have approximately 900 email subscrib-ers. For email subscriptions, please visit: www.TDSN.org or Triangle-DownSyndrome.org to set your de-livery 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 adver-tising rates and policies.

The deadline for submitting advertisements is the first day of even-numbered months for the following issue. Submissions are due by the 10th of evennumbered months. Any information received after that date will be considered for the next newsletter.

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.

BOARD OF DIRECTORS

President: Jerry HigginsVice President: Stanley Monk

Treasurer: Beth LaPierreSecretary: Tara Moore

Board: Nick DozierKevin GriffinBarb Kocher

Marcia Van Riper

The Triangle Down Syn-drome Network wants to welcome another organiza-tion that has our families

first and foremost in its heart.Gigi’s Playhouse will offer ther-

apeutic and educational programs that advance literacy, math skills, fine and gross motor skills and more; all of which are free to individuals with Down syndrome. It’s scheduled to open on June 18, at 2887 Jones Franklin Road in Raleigh and will have an event that day from 2-4 p.m.

Like other Down syndrome-fo-cused entities in the area such as Anna’s Angels and HopeSprings Vil-lage, several of Gigi’s leadership were once involved with TDSN. Michelle Schwab, Michelle Pfeiffer and Maria Fumagalli de Romano spent count-less hours volunteering at the Buddy Walk or other events through the years before their passion for people with Down syndrome led them to follow their dreams to advance aware-ness and opportunities.

In the last 25 years, the progress made here is the Triangle area by determined parents of children with Down syndrome is astounding. In addition to the establishment of the

Duke Children’s Comprehensive Down Syndrome Program, we are fortunate to now have four orga-nizations here to support people with Down syndrome across their lifespans.

• TDSN is the Down syndrome family support organization in the Triangle for all families

• Gigi’s is an playhouse providing programs that includes training and education

• Anna’s Angels funds research to improve the cognitive and communicative ability of indi-viduals with Down syndrome

• HopeSprings Village provides community-based housing options for adults with in-tellectual and developmental disabilities

There’s strength in numbers and the more all of us speak out about opportunities for people with Down syndrome, the better it will be. Together, we can provide one voice and assist each other to benefit all families and individuals with Down syndrome. We can provide the voice for those who are not heard and some who have difficulty speaking.

So, welcome Gigi’s. We wish you the best of luck and look forward to many years of collaboration on behalf of the Down syndrome community.

FROM THE PRESIDENTJERRY HIGGINS | TDSN BOARD PRESIDENT

INTERIM PROGRAM DIRECTORKari Alberque

INFORMATION LINE

(919) 803-0515

WEBSITE triangledownsyndrome.org

or TDSN.org

MAILING ADDRESSPO Box 37505 Raleigh NC

27627

STREET ADDRESS1012 Oberlin Road, Suite

300Raleigh, NC 27605

FACEBOOK /triangledownsyndrome

TWITTER/triangleDSN

INSTAGRAMtdsnpics

PINTEREST/triangledownsyn

A WHOLE NEW WORLD

Kaden Phares performed a dance routine to “A Whole New World” from Aladdin with three talented profes-sionals at the April 23 “Danc-ing Like The Stars” event ben-efiting Clay Aiken’s National Inclusion Project, which works to make inclusion of children with disabilities a reality. Kaden competed with profes-sionals from the Arthur Mur-ray School of Dance in Cary, which provided 10 lessons to learn a fully choreographed and theatrically presented routine. According to his mother, Michelle, Kaden was a fast learner, “willing to try anything the dancers wanted him to attempt.” Kaden re-ceived all 10s from the judges and helped raise money for the cause.

KELLY NESTLETDSN VOLUNTEER PROFILE

BIRTHDAYSMAYAurora JacobsJudson DimitryGeorge MasourasJennifer CanonClaudia MenconiWilbert HowardMary Evelyn Rider O’NeillWelsey DelvalleTyler William FinneganKevin MimnaughJohnny SturtzAJ HeintzHunter LesslieMichael Dylan SyxChance HughesAdelyn Rose CollieHudson MooreSara GreenAndrea FuentesWesley DunnBrandon LillistonEkam Jot Singh MehmiBryce AlfordLyfe GriffinLily CreechJacqueline TillerTrace KirbyRhonda McLeanLevi SmithLaci Joy WadeMatthew HowardJacob VillaflorCatherine Imani GrahamRhonda BurchettChase WalkerPierce GilmoreJulia Katherine DioknoSarah Loel BoldenMaddox RodriguezEva KipphutLondon Reece LawrenceBennett DonovanAdrick MastersOliver Huntley

JUNEZachary LaPierreAdi Lior Eugene BrynzeyJensen Louis KenneyA.J. MarrowAnna MerrillsJulia Jane Burgess-WiseJonathan Luke DayBert VandenbergJacob StroudCarter JonesSarah Jo PoliBertie GreenwillieQuinlan CumminsKarmen RacicChristian CorleySonny AlexanderTaylor PittmanBenito Ceja JrRJ HowardNoah WattsTracy “TJ” WilsonBaxter StaleyEmily WoffindenKristina Brianna KinseyAlisah GrossFerris Ashmeg-BauerMarcus DickensBryce SurrattJacob SchellNick TaramangosArwynne LibertyTinsley HessCara Jean ZebrowskiZydayavion WhiteIlene WhitehouseVickie GentryAnna Grace PittmanOlivia Leigh GrahamGriffin BrewerMaggie LeahyLuke Ward

Kelly Nestle is one of the many volunteers that make TDSN possible. She brings joy as she

contributes her time to so many activities and events. Thank you Kelly for all that you do to support people with Down syndrome and their families!

Tell us about yourself.I am from Michigan. I have lived in

MA, NJ, IN and NC. I love to paint ceramics. I enjoy walking my dog Kiah and spending time outside. I enjoy bak-ing and cooking.

What might we be surprised to know about you?

Last summer I worked behind the scenes and was an extra in a movie.

When and how did you first get involved in with TDSN?

I first got involved with TDSN about 16 years ago, because I wanted to do something to honor my sister. So I searched online and found TDSN. I emailed and asked if there was anything I could do and that is how I started work-ing with the Buddy Walk. I could not imagine not doing this. Since working on the walk I have also helped with the teen dances, Christmas parties, spring picnics, and the learning program.

What would you tell someone who is thinking about volunteering?

I would tell someone that is thinking about volunteering to really just do it. Jump in and enjoy the ride. You will make some great friends. I have meet some wonderful people throughout the years that I have been doing this. I have had the great pleasure of watching their children grow and change. The time you spend with these families is priceless. The knowledge that you helped even one family, one person is so amazing. If you have been helped at least once in your life and you know how good it feels imagine how much better it feels to give that back to someone else.

VOLUNTEER OPPORTUNITIESThe following are a few opportunities

to get involved. If you would like to learn about these or other leadership volunteer position, please reach out to TDSN at INFO@triangledownsyndrome.org or (919) 803-0515.

• The Volunteer Office Assistant will help with data entry, donation acknowl-edgment, preparing birthday cards, assembling New Family Welcome Packages and administrative tasks. Work can be completed in the TDSN office or at home with a personal computer (3-5 hours per week).

• The Resource Fair Volunteer represents TDSN at various resource fairs. Duties include picking up the TDSN Resource Fair Kit, bringing it to the resource fair and staffing the table. This position requires a brief training about Down syndrome and TDSN.

• The First Call-New Parent Support Vol-unteer attends First Call training; talks with and visits with expectant and new parents, providing support when needed.

• Because we offer free child care at certain trainings and events, we have a regular need for volunteers to hold babies and play with the kiddos!

• Do you have event planning or fundrais-ing skills, a gift for talking to people, or connections with the community? We could use you as we expand our fund-raising to support our work and mission.

• The Buddy Walk is the TDSN’s biggest event and fundraiser. The BW Commit-tee meets throughout the year to work on event planning, fundraising and raffle prize procurement.

fOMiLY

A SPECIAL NIGHT FOR SPECIAL NEEDS

A FREE after-hours event exclusively for kids with special needs and their families to experience

Marbles in a calmer, quieter environment.

Upcoming 2016 Dates: Tuesday, June 14

Sunday, August 14 Wednesday, October 26

Friday, November 18

FOUNDING PARTNER SPONSORED BY

of the Triangle

201 EAST HARGETT STREET • DOWNTOWN RALEIGH 919.834.4040 • www.MarblesKidsMuseum.org

For a change, a positive, uplifting story was making headlines at the General Assembly in Downtown

Raleigh on the morning of May 4. That day, Paul Kocher — donning a

new suit and tie and carrying his brief-case — walked up the Capitol steps on his way to his new internship under State Rep. John Bradford of Meck-lenburg County. Paul became North Carolina’s first legislative intern with Down syndrome, and his first day was documented by ABC11 reporter and TDSN supporter Heather Waliga.

“Paul! How are you? You ready to get started today?” ABC11 reported Bradford’s first words to his new staffer. From Day 1, Kocher was introduced to the whole legislative process, from bill drafting to committees to the final votes on the House floor.

“We believe people with special needs should have the same opportu-

nities as everyone else,” Bradford said that day. “We’re excited to have him here, and we’re going to put him to work.”

§§§It’s been nearly a month since Paul’s

history-making first day, and in that time, the Athens Drive High School graduate and future UNC-Greensboro

student has felt right at home in his role. His parents, Kevin and Barb Kocher, say their son has “blossomed” in that time, a relief considering Barb’s trepidation when the family was first approached by Bradford about the position.

“I’m naturally a skeptic, and I admit at first I was suspicious, because we didn’t know Mr. Bradford,” Barb said. “Was it a publicity stunt or something more nefarious? But the more I learned about him, the better I felt. He’s married with four kids. He worked with students with Down syndrome at Clemson University.”

It was Kevin who convinced his wife to let Paul make the decision on his own. When they approached their son about the possibility of working in state government, Paul “lit up, like it was something he wanted to do all his life.”

REPRESENTING ALL OF US PAUL KOCHER BECOMES STATES FIRST LEGISLATIVE INTERN WITH DOWN SYNDROME

“We’ve been told when people see Paul in the hallways at the Assembly, it changes the tone of the building. Government

can be cutthroat at times, and people tend to forget humanity in that environment. But when

they see Paul, they can’t help but smile.”

— Barb Kocher —

The skepticism went away after the Kochers met Bradford and his legisla-tive assistant Anita Spence. Both have made the experience for Paul enlight-ening and challenging. In addition to helping with mailings, Paul offers his own insight to Bradford’s votes, giving him a thumbs up or down in the chambers before the vote is cast.

“It’s unbelievable to me the confi-dence he’s gained. He’s so proud of himself,” Barb said. “We’ve been told when people see Paul in the hallways at the Assembly, it changes the tone of the building. Government can be cutthroat at times, and people tend to forget humanity in that environment. But when they see Paul, they can’t help but smile. His presence is needed in a place like that.”

Paul’s internship will remain through this session, which typically runs into July. In the fall, Paul — a student at

Wake Tech this past year — will enter UNC-Greensboro’s Beyond Academ-ics programs, a partnership between private nonprofits and the school to provide post-secondary education to students with intellectual and devel-opmental disabilities. When he com-pletes the program, Paul will receive a four-year certificate of completion and training to enter the workforce, live independently, and engage civically and socially in his community.

As for beyond, it’s up to Paul. But if his experience in Raleigh is any indica-tion, Barb can see her son returning to the Capitol some day.

“Two weeks ago, he went to the library and checked out a book on North Carolina government,” she said. “This experience has definitely inspired him.”

— by Billy Liggett

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What a day of celebration and awareness here in the Triangle for World Down Syndrome Day. Babies James and Sadie showed up to cheer on volun-teers packing welcome packages for new families. Heather Waliga featured TDSN in a great story for ABC11 about welcoming new babies. Kings hosted one awesome party for our community. TDSN families performed random acts of kindness in honor of people with Down syndrome. Crazy socks were rocked all over the place. Local employers participated in Dress Down for Down Syndrome to raise awareness and funds. Thanks to everyone who made this day possible!

WORLD DOWN SYNDROME DAY

FRESH

The Triangle Down Syndrome Network has partnered with Gigi’s Playhouse, Anna’s Angels and Lili Engelhardt Fine Art Portrai-ture for an exciting new book to celebrate our loved ones with Down syndrome.

The project — which will serve as a fundraiser for the three nonprofit organiza-tions — will include beautiful portraits of individuals with Down syndrome and their families. The unforgettable portraits will be accompanied by open, authentic stories, sharing the journey of those with Down syndrome. It is our hope the book will spread awareness, foster understanding and inspire our communities.

Lili Engelhardt Fine Art Portraiture is donating time and talent to photograph the families.

Your donation of $175 will include: • Studio session at Lili Engelhardt Fine

Art Portraiture’s studio• Two pages in the book. One with

your portrait (the portrait can be of the family, siblings or individual) and the other page will have a poem, quote or short story that you provide which captures the spirit of your portrait

• One copy of the book• A $175 gift certificate to spend on

additional portraitsSpace is limited! To reserve your spot in

the book, please sign up by visiting http://tdsn.org/beautifulsouls

The front and back cover will be auc-tioned off — or you can purchase your cover photos for $5,000 for the front or $3,000 for the back. You can also sponsor a family with your $175 donation so they can be a part of the book.

TDSN, GIGI’S PLAYHOUSE,

ANNA’S ANGELS PARTNER WITH

STUDIO FOR FUNDRAISING

BOOK

LOCAL ICE CREAM

ICE CREAM SOCIAL &TDSN WELCOME BASKET DRIVE

FRESH will be donating a portion of their sales to TDSN

ITEMS NEEDED TO WELCOME BABIES INCLUDE:• NEWBORN to 6-month onesies

• Small toys or rattles• Crds and letters welcoming baby and family

(919) 803-0515 | info@triangledownsyndrom.org

Friday, May 27 4-7pm

TDNS.org

GIGI’S PLAHOUSE OPENING CELEBRATION JUNE 18

Gigi’s Playhouse will hold it grand opening celebration on Saturday, June 18, from 2 to 4 p.m. at 2887 Jones Franklin Road in Raleigh.

We at TDSN couldn’t be happier or more excited. Please join us for this special event! Some of you are just learning about GiGi’s Play-house, and some might not even know about it yet.

Visit www.gigisplayhouse.org/Raleigh to learn more and keep updated on their events.

This place is going to change lives. This place will make a differ-ence for so many in our community!

UPDATE ON NC ABLEThe North Carolina Achieving a

Better Life Experience (ABLE) Act, signed into law in 2015, means people with disabilities can save money in a tax-deferred account for some of their expenses related to health and wellness, employment supports, education, housing, and other costs not covered by Medic-aid.

This new type of account allows people with disabilities to save up to and including $100,000, which will not be counted toward a per-son’s eligibility for SSI or other fed-eral means-tested programs. A total of $14,000 a year can be contrib-uted to this account from various sources such as friends, family and employment earnings.

The North Carolina Department of

State Treasurer is coordinating the implementation, administration and outreach of this important new program, with a goal to have NC ABLE accounts offered late in 2016.

Visit the website at www.nctrea-surer.com/able to view resources and sign up to be kept up-to-date on the NC ABLE Program. 2016.

MESZLER PHOTOGRAPHY, A FRIEND TO TDSN

Patricia Meszler is a local photog-rapher with a heart for giving back. When she launched her own busi-ness, she knew that this would be an integral part of her plan, and as a friend of a parent of a child with Down syndrome, Patty chose TDSN as a local organization that she wanted to support.

She has made generous monetary contributions to TDSN as well as supported us with photography at events such as the Buddy Walk and Party and Pics with Santa. We ap-preciate all Patty has done for our community and highly recommend

her for your photography needs!

When you book a session with Patricia Meszler Photography and mention TDSN, you will receive two complimentary digital files. A percentage of your fees will be donated back to the Triangle Down Syndrome Network.

If interested please reach out to Patricia Meszler at patriciameszler.com or (919) 749-4144.

MAY27 Ice Cream Fundraiser and Welcome Basket Drive at Fresh Local Ice Cream, 6033 Glenwood Ave, Raleigh, NC

30 Down Syndrome and Autism Support Meeting at Zahn home in Cary, RSVP at TDSN.ORG/EVENTS for address

JUNE4 Financial Strategies for Families of Children with Special Needs at 8816 Six Forks Road Suite 301, Raleigh, NC

14 Marbles Kids Museum Family Fun Night, 5:30 p.m.

18 Gigi’s Playhouse Grand Opening Celebration at 2887 Jones Franklin Road in Rlaiegh (2-4 p.m.). Some of you are just learning about Gigi’s, and some of you might not even know about it yet. This place is going to change lives! Please join us for this excit-ing day.

21 Mom’s Night Out at Gonza Tacos y Tequila, 1849 South Main St., Wake Forest, NC

For more information and to RSVP, visit TDSN.ORG/EVENTS

CALENDAR JUNE 2016

More than 250 people were in attendance at the TDSN Spring Picnic — the rain held off and it was a beautiful day. Thank you to all the great volunteers that made it possible. If you are interested in helping to plan the 2017 TDSN Spring Picnic, email info@triangledownsyndrome.org to inquire about serving on the Events Committee.

TDSN SPRING PICNIC

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