Visit From Crnic Institute
On December 7th, we had the pleasure of welcoming Linda Roan to our Playhouse to present on some of the clinical trials available at the Linda Crnic Institute for Down Syndrome. Linda was able to share valuable information about what the Crnic Institute has to offer, clinical trials coming up and her own personal experience.
About Linda
Linda not only works at the Crnic Institute but is a mother of an adult daughter with Down syndrome and an advocate for the Down syndrome community.
Linda’s daughter participated in an autoimmune skin condition trial after she was diagnosed with Down Syndrome Regression Disorder (DSRD). This trial looked at soothing the immune system and so far it has been very successful for her daughter, especially her DSRD. After this, Linda became involved as staff with Crnic Institute and is happy to be spreading the good work they are doing!
About The Crnic Institute
Uses state of the art research platforms to understand the unique biology and disease spectrum caused by trisomy of chromosome 21. Their ultimate goal is to uncover precision medicine approaches to improve health outcomes in Down syndrome.
A Little About the Research Discussed:
Collaboration with Boys Town Research Hospital
- Helps scientist better understand how hearing and balance develops
- Participants complete hearing and balance results and receive immediate results
Chronic constipation study
- An Exciting Collaboration Between The Neurogastroenterology and Motility Program at the Children’s Hospital of Colorado and the Linda Crnic Institute for Down Syndrome Research to offer specialized treatments for Chronic Constipation
- Allows doctors to learn more about chronic constipation in Down syndrome to benefit those suffering from this condition and improve future treatments
Research on Potential Therapies to treat Down Syndrome Regression Disorder (DSRD)
- Scientists and physicians from the Crnic Institute at the University of Colorado, Children’s Hospital Colorado, and Children’s Hospital Los Angeles have teamed up to investigate potential treatments for Down Syndrome Regression Disorder (DSRD)
- Designed to help determine effectiveness of treatments for DSRD
Clinical trial coming soon: Mission 1(Modulating of the immune system in Down syndrome for improved outcomes and Neurodevelopment)
For Ages 2 through 11
- Will test a medicine to improve health in children with DS. The medicine, tofacitinib, may help control the immune system, which often works differently in people with DS
- On average, people with Down syndrome have more interferon activity in their immune system than the typical population, even when they aren’t actually fighting a virus. The research will aim to find out if the medicine can reduce these problems and improve health and brain development.
- This study looks at:
- What are the impacts of interferon hyperactivity during early childhood?
- How early during childhood could JAK inhibition be safely administered for therapeutic benefit?
- What are the long-term effects of JAK inhibition?
“I attended Linda’s session to learn more about the Crnic Institute. I was impressed by Linda’s professionalism and passion for spreading the word and informing us on recent trials and opportunities. I was excited to learn about an upcoming study that Leo’s eligible for that may really benefit him. I am very grateful that we live in a place that has a Gigi’s Playhouse and the Crnic Institute; both are tremendous benefits to the DS community!”
Monica George, mother of Leo
“Our daughter spent much of her younger years at Children’s Hospital Colorado so we were somewhat aware of the Linda Crnic Institute, however we had no idea how truly unique it is and the groundbreaking research it’s providing to benefit people with Down syndrome all over the world. And it’s right here in our own backyard. Thank you for giving us the opportunity to learn about it”
Jennifer WEst
How else can you help?
You can participate in one of the largest and most comprehensive studies of Down syndrome in the world!
The Human Trisome Project BioBank provides researchers access to biological samples and health information for specific research questions. This project increases the speed of research of individuals with Down syndrome and understanding related medical conditions such as leukemia and Alzheimer’s disease.
Anyone Ages 6 months – 89 years old with or without Down syndrome can participate! It only requires a successful blood draw, a mouth swab, and allowing researchers to look at your health information
Interested? Email: DSresearch@cuanschutz.edu
More Information:
- Click Here to learn more about current studies!
- Subscribe to Newsletter!
- Other ways to become involved? Join the Global Down Syndrome Foundation to learn about other ways you can support and advocate for people with Down syndrome! https://www.globaldownsyndrome.org/
We look forward to our continued collaboration with Linda and the Crnic Institute!
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