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Dup15q Siblings Matter Program

Siblings may experience a wide range of emotions due to the unpredictability of day-to-day life caused by dup15q syndrome. That’s why it’s important to recognize the role these siblings play in their sibling’s care, validate their emotions, and give them tools to cope and express their feelings. Dup15q Alliance developed our Sibling Matters Program in response to the Sibling Voices Study.

This study highlighted the need to provide sibling support and family education to decrease potential negative long-term consequences for individuals whose siblings have severe epilepsy. The published study assessed the emotional impact of growing up with a sibling with a Developmental and Epileptic Encephalopathy.  Developmental and Epileptic Encephalopathy (DEE) refers to a group of severe epilepsies that are characterized both by seizures, which are often drug-resistant, as well as encephalopathy, which is a term used to describe significant developmental delay or even loss of developmental skills.

 

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Dup15q Alliance is proud to offer VIP Sibling kits and Parents & Caregivers Kits.

The kits are designed to help siblings express and talk about their feelings with peers and the adults around them. These kits also allow for the adults to talk to the siblings in their lives.

Order VIP Kits
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Dup15q Alliance offers direct support through monthly youth Sibshops by trained Dup15q Alliance facilitators.

Sibshops seek to provide siblings with opportunities for peer support and education within a recreational context through monthly zoom calls. 

SibShop Calendar
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 Dup15q Alliance is proud to offer an educational tool called the Compassion Experience.

This interactive educational tool was developed to create a sense of understanding and compassion among grade school-age peers in the siblings classroom. We provide the resources you will need to bring this to the classroom.

Compassion Experience
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Dup15q Alliance launched our Sibling Spotlight celebrating celebrates siblings who are making a difference in the world.

 By highlighting these siblings, we can raise awareness and educate others about kindness, compassion, and understanding. Do you know a sibling making an impact? Nominate a Sibling Today!

Nominate a Sibling

Thank you for being YOU and making a positive impact on our world! 

“She has become an advocate not only for T, but for ANY kid who is “different”. She is an amazing big sister and is going to move mountains.”

 “Denise was born with a nurturing and loving heart. She gives so much attention to her sister without expecting anything in return. She is the ultimate sibling for Jeanette. I’m so happy they have each other”

“”Her brothers who have helped and supported her throughout her 22 yrs and whom now support her in her independence to be like them and lead her own life.”

“Jared was almost 12 when Riley was born. He has been the first one to always say ‘I told you she could do it!’ just when their dad and I were doubting a specific milestone. He’s a big cheerleader for her still at almost 27! First person he asks about!”

Dup15q Alliance Sibling Matters Program is supported by UCB

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Other Resources: 

The Arc recognizes that siblings play an important role in the lives of their brother or sister with IDD. It is crucial that siblings are supported to be the best advocate they can be. To achieve this goal, they must have access to information and resources to help them make informed decisions – whatever their involvement. Check out the resources available for adult siblings through The Arc: Siblings of People With Intellectual & Developmental Disabilities (thearc.org)