Be a Champion for Adelind and IDefine
Help accelerate life-changing research for Kleefstra syndrome
Kelly Cunningham
I donated in support of this campaign.
Anonymous
I donated in support of this campaign.
Pickleball Tournament
I donated in support of this campaign.
$3,114
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Silent Auction
I donated in support of this campaign.
$4,607
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Laurel Passera
"Great work! Keep it up! "
$50
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Amy Iddings
"Best of luck to all the players in the Pickleball Tournament, raising awareness and funds for such an important cause."
$100
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Bob McKeown
"Good luck in your tournament. "
$100
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Kevin Haight
"Haight Family <3 "
$100
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Britt Carter
"Cheering on the Smashers for this great cause!"
$250
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Brodie Smith
I donated in support of this campaign.
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Carol Varnado
I donated in support of this campaign.
$100
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Dorothée Alsentzer
I donated in support of this campaign.
$100
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Lou Polletta
I donated in support of this campaign.
$75
Anonymous
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Bruce Cuddy
"Best of luck in finding a cure. All our love. "
$5,000
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Tracey Woodward
"Rooting for Addy and team Simply Smashing!❤️💪🏻"
$100
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Deirdre Clarke
I donated in support of this campaign.
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Susan Johnson
I donated in support of this campaign.
$100
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Nancy King
"Go Adelind!!!!!!"
$50
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Ben and Sara Royster
I donated in support of this campaign.
$50
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Jared & Meghan Knight Dutton
I donated in support of this campaign.
$1,000
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Susan Pfahler
"Go Team Anything for Adeline!"
$100
120%
Towards Our Goal
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Fundraisers
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Recurring Donors
Supporting Adelind and the KS Community: Our Relentless Push for a Cure
Hi, I'm Margo — mom of Adelind and board member at IDefine, The Kleefstra Syndrome Foundation. I'm excited to host the first Rally for Rare Pickleball Tournament to support critical research on the rare disease that affects my daughter.
The heart of the tournament is our fundraising challenge. Your contribution helps IDefine identify treatments and — one day — a cure, ensuring a brighter future for hundreds of children living with KS caused by a loss of function in one copy of the gene EHMT1.
Despite many challenges, Adelind is well-known for her extraordinary ability to make people happy. To this day, she has never met a stranger. We are positive about her future, and we want to do everything we can to help her live her best, most independent life. IDefine is leading the charge. Please consider making a gift to support IDefine's crucial work.
Stay tuned for our Silent Auction which will launch in early February!
Thank you for supporting Adelind and everyone in the KS community! Learn more about Kleefstra Syndrome Awareness Day as proclaimed by the Governor of NC.
More about Adelind:
She’s in 7th grade at The Fletcher Academy in Raleigh, a wonderful school for kids with learning and attention differences. It’s a very special place where she has made her first real friendships. She does therapeutic horseback riding at Helping Horse, swims with the Longview Sharks, and goes on adventures with the Girl Scouts. The following photos are from our visit to the Kleefstra Clinic at Boston Children's Hospital which was created as a result of IDefine's efforts. Learn more about the effects of KS here.
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