“They Came to Us!” Nebraska Mom Shares Family’s Research Experience

“When we first heard about Project CAPE-abilities from the Global Down  Syndrome Foundation, we were excited to learn more. We reached out to see if it would be a good fit and boy was it! Being that our son, Daniel, is only 18 months old, we were concerned about traveling to Colorado to participate in this study. It turned out that wasn’t a problem – they came to us!  When the team arrived at our home, they were friendly and professional and clearly enjoyed what they did because they were excited to play with Daniel. If he got fussy, they were totally understanding and flexible. It felt like we made a difference by contributing to this important research, but our lives were not upset in order to do so – a win-win!  We had a phenomenal experience, and I highly recommend participating!” – Elizabeth Draney, Executive Director of Down Syndrome Alliance of the Midlands

If you’re interested in participating in this study, please fill in the form at the bottom of this page.

Since its inception, GLOBAL has been the only organization in Washington, DC, advocating for increased funding for Down syndrome research at the National Institutes of Health. Our goal is simple – we want to dramatically improve health outcomes for, and increase the lifespans of, people with Down syndrome.

Families make a difference by supporting our advocacy work, but also by participating in studies. Before GLOBAL, there were relatively few research opportunities to help expand knowledge about Down syndrome. Now there are many!

One such study is Project CAPE-abilities (Communication And Play Early abilities in Down Syndrome), which is investigating how play and communication skills develop in children with Down syndrome and how they connect to health and other conditions like autism. The study is open to children with Down syndrome age 17-24 months. And while the research is primarily occurring in Colorado, as one mom discovered, researchers will travel to you!

Elizabeth Draney, Executive Director of Down Syndrome Alliance of the Midlands, shared her family’s experience with the study:

Participating families can receive up to $300.

 

 

 

 

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