SCAR-15
A foundation committed to finding treatment and a cure for individuals living with Spinocerebellar Ataxia Recessive Type 15, a rare degenerative genetic disease.
Celebrating a Transformational Gift for Genetics Research at Lurie Children’s
Our family was honored to participate in a truly historic day at Lurie Children’s Hospital as the Edwards Family announced a remarkable $11M gift advancing genetics, genomics, and rare disease research. This investment will play a pivotal role in accelerating answers and improving outcomes for families on complex diagnostic journeys, families like ours.
During the ceremony, Jack proudly held the ribbon during the ribbon-cutting alongside Governor Pritzker and leaders from Lurie Children’s, which is a moment our family will never forget.
Carrie was interviewed by the Chicago Tribune, sharing the nine-year diagnostic odyssey that ultimately led to Jack’s SCAR-15 diagnosis, as well as our excitement about the hope this gift brings to the rare disease community. Both Carrie and Matt also spoke with NBC Chicago, reflecting on why this work matters so deeply for patients and families across Illinois and beyond.
We are profoundly grateful to the Edwards Family for their extraordinary generosity and to Lurie Children’s for including us in this special day. Their commitment ensures that cutting-edge genetics research, once out of reach, will now grow right here in Chicago, offering meaningful progress for children facing rare and undiagnosed conditions.
To learn more, watch and read the coverage below:
Chicago Tribune
NBC Chicago
The future of rare disease research feels brighter, and we are humbled to be part of this moment.
Our Story & Mission
Learn about our family and mission.
What is SCAR-15?
Learn about this rare degenerative genetic disorder.
Research
Learn more about the research process.
SCAR-15 Path To A Cure
Currently we are at Step 1 — We need your support to reach our goal of finding a cure.
You Can Help
Please Consider a Donation!
Your generous donations will continue to aid our mission to help fund research to develop treatments and a cure for SCAR-15.