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Kool Kid Alliance
Supporting kids with KDVS
P.O. Box 928
Arden, NC 28704
828.712.6695

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Kool Who: 

Meet The Alliance Team


Ted Needham
President/CEO

As the president and co-founder of Kool Kid Alliance™, Ted’s experience as a business owner and executive of sales and training for Fortune 500 companies has given him a strong skill set to create this organization which advocates for children with Koolen-de Vries Syndrome and their families. Because he spent most of his childhood in the foster care system without an advocate watching out for his needs, Ted today has a personal commitment to champion underserved and disadvantaged children. He has also worked as a swim instructor for special needs children and as a counselor for foster children at various group homes.

Austin was the first Kool Kid Ted met while dating Stephanie, now his wife. Austin and Ted have grown very close now that Austin is his son. Ted and Stephanie work together to help Austin every step of the way. Ted fell in love with all of the Kool Kids at the first gathering and realized he wanted to support them and their families. He often says that he has been “enriched by meeting these loving and wonderful children”. To help parents and caregivers deal with the emotional challenges of raising a Kool Kid, he and Stephanie started a Facebook group called KDVS Support Group Raw, which is a safe place where parents can talk, vent, cry, laugh, and support each other. 

tedneedham@koolkidalliance.com



Stephanie Needham

Vice President/Co-Founder


Stephanie Needham worked in Asheville as a General Manager of Chili’s Bar and Grill for 15 years. With her business acumen and as a mother of a Kool Kid, Stephanie is dedicated to making the difficult journey easier for Kool Families through emotional, mental, and financial support.


During her pregnancy with Austin and his twin sister, Stephanie spent two months on bed-rest due to complications with the pregnancy. When the twins were born in 2005, Austin had many health issues, including a cleft lip and palate. In 2011 Austin was diagnosed with 17q21.31 Microdeletion Syndrome (now known as Koolen-de Vries Syndrome). Stephanie and Ted attended their first Kool Kid gathering  in 2013 where they met kids like Austin and their families and realized they were not alone on their journey. In July 2015, Stephanie and Ted hosted the KDVS gathering in Asheville, bringing together over 60 families and researchers/doctors from around the world to learn about and support Kool Kids.  Stephanie believes that, “these kids, with their incredible personalities and their smiles, make it all worth it”.

Stephanie and Ted Needham live in Asheville, North Carolina with her three children, their four dogs, two cats, and a rabbit. Stephanie also has a son and a grandson who live in California.




Jacqueline Robertson

Chairman


Jacqueline, is currently self-employed and the co-administrator of the Facebook support group KDVS Raw. Jacqueline has facilitated significant fundraising efforts for various causes, including 4 Paws for Ability, in which she raised the funds necessary to train and secure her son’s service dog, Fizz. Jaqueline’s fundraising exceeded the amount needed for Fizz and she was able to donate the balance to help other special needs families acquire a service dogs as well. 

In October 2007, Jacquline’s son Jacob was three years old and was the very first case of 17q21.31 Microdeletion Disorder (as KDVS was known at the time) to be diagnosed in the United States and the seventh case diagnosed worldwide. By January, 2008 connections with other families began globally – and everlasting friendships were formed. Through these connections it became Jacqueline’s personal mission to build a website where families could gain support immediately after being diagnosed. The next month, Families of Chromosome 17 Disorders, the very first KDVS support group through Yahoo was launched. The original “awareness" website formally known as chromo17.com was launched shortly thereafter. Jacqueline continues to be inspired to help others in her extended Kool Kid Family.

Jacqueline resides in Liberty, Mississippi, along with her husband Patrick, their three children, and Fizz. 
 
Tina DiGaudio Kool Kid Alliance Secretary Board of Directors


Tina DiGaudio

Secretary


Tina is currently a middle school principal in Fayetteville, North Carolina and is pursuing her doctorate form the University of North Carolina at Wilmington. She also serves as the Battalion Executive Officer of the 6th Battalion (Military Intelligence), 108th Regiment US Army Reserves.

Born and raised in Buffalo, New York, Tina graduated from Buffalo State College and holds two masters degrees in education. She resides in Hope Mills, North Carolina with her husband Adam and daughter Josie, who was diagnosed with KDVS at the age of three in 2010. Tina is grateful to have connected with her KDVS family online and at the gatherings in Dallas in 2014 and Asheville in 2015.



Mary Bridgette (Bridge) Green Kool Kid Alliance Treasurer Board of Directors


Mary Bridget O’Keefe Green (“Bridge”)

Board Member  Director of Fund Raising


Bridge is a Kool Kid mom who has made it her mission to connect with other Kool Families. She teaches English as a New Language at an elementary school on Long Island. Daniel was diagnosed with KDVS a few days before his first birthday in 2012.  Bridge and the kids have been to all of the KDVS gatherings.  In addition, she visits with other Kool Families outside of the “official” gatherings. She’s an active member of the Facebook groups and proudly tells everyone she meets about KDVS and the sweet, joyful, and loving nature of the Kool Kids.

Originally from Long Island, NY, Bridge has a B.A. in Spanish and Anthropology from S.U.N.Y. Plattsburgh. After spending her junior year studying in Seville, Spain, she moved to Washington, DC to work at a non-profit organization. She became an active volunteer organizer in the DC public schools. In 1998 the Teach for America program sent her to Los Angeles, California to be a K-1 teacher. She completed her teacher certification coursework at Cal State Dominquez Hills while teaching full-time. After September 11th she moved back home to New York to be closer to family. She has a master’s degree in TESOL, as well as an advanced certificate in literacy from Hofstra University. 

She lives with her husband Matthew and their two children on Long Island, New York.
Erin Heins Kool Kid Alliance Board of Directors


Erin Hines

Treasurer


Erin has always found joy in helping others and found her true calling when she started working with developmentally challenged children in a special education classroom. She is passionate about the vision and mission of Kool Kid Alliance.

Erin graduated from The University of the Pacific with a bachelor’s degree in liberal studies with a concentration in special education. She is currently working on her teaching credentials and master’s in education with a concentration in special education. Erin lives in California with her husband and their two year old son.  




Frank Beauregard

Board Member


Frank lives in New Hampshire with his wife Leanne and their two sons. In his down time he enjoys running, illustration design, spending time with his wife and chasing their boys around their house. 

He currently works as a Graphic Design Supervisor at a medical device company in Massachusetts. Frank has a BA in graphic design from Fitchburg University. His son Aiden was diagnosed with KDVS in 2007 when he was only a few months old.  Aiden was one of the first in the region to be diagnosed at such an early age. Today, Frank calls Aiden his little professor because he teaches all of them something new each day; the most important lesson learned is to never give up fighting. Frank is grateful to have found the KDVS support group on Facebook. He, Leanne, and the boys were also fortunate to meet their extended Kool Family for the first time at the 2015 KDVS gathering in North Carolina. Frank is eager to help Kool Families financially and raise awareness of KDVS.

  

 
Diana H Giffin Kool Kid Alliance Director of Media Board of Directors


Diana Heuerman Giffin

Manager Of Media


A mother of four, Diana is also a full time cosmetologist and certified nurse’s aid. In January, 2011 her son Nicholas was diagnosed with Koolen-de Vries Syndrome, at the age of 19. Through her children she has learned to have extra patience, compassion, and acceptance. Over the past few years she began to realize she wanted to help increase awareness of Koolen-de Vries Syndrome and advocate for her son and others with KDVS.

Diana appreciates how her son has changed her life and the lives of others around him. Through this journey Nicholas has learned life skills that help him thrive. Caring for Nicholas has helped Diana focus on the important things in life and appreciating Nicholas’ accomplishments – big or small.



Stephanie Taylor Kool Kid Alliance Director of Fundraising Board of Directors


Stephanie Taylor

Manager of Fundraising


Stephanie started her career in the medical field as a respiratory therapist. She has continued working in the medical field and truly enjoys the work that she does – as helping people has always been her passion. Stephanie has had great successes raising awareness for this disorder and since joining our organization has created a sound strategy for national fundraising that’s already paying off.

Stephanie lives in California with her Kool Kid Alexis her husband and there other 2 children.


 
Kool Kid Alliance Coming Together Quote
Kool Kid Alliance Kool Kid
 
 
Kool Kid Alliance promoting awareness and supporting families