University Hospitals Rainbow Babies & Children’s Sickle Cell Disease Patient to Represent the Hospital in Washington, DC

CLEVELAND, Ohio – One local family is heading to Capitol Hill to represent UH Rainbow Babies & Children’s Hospital (UH Rainbow) and ask their members of Congress to take action and make sure children can count on a strong healthcare network to meet their unique needs.

The Evans family’s effort in Washington is part of a national push to elevate patient stories and educate lawmakers about the unique role of children's hospitals and the essential care they provide to children and young adults like Canaan. 

The in-person event, the 19^th annual Children's Hospital Association's Family Advocacy Day, takes place June 12-14. During the three-day event nearly 50 pediatric patients and their families will call on Congress to invest in the future of our country through supporting an increased pediatric workforce, strengthening Medicaid and CHIP, and expanding mental health services for children and teenagers.

Nearly one year ago, Canaan underwent an investigational therapy treatment at UH Rainbow using CRISPR technology to modify his own cells, then reintroducing the modified stem cells back into his body.

Canaan’s doctor, Jignesh Dalal, MD, UH Director of Pediatric Bone Marrow and Stem Cell Transplant said his blood work shows no traces of sickle cell disease. Canaan has been free from acute pain and chronic fatigue since the treatment and is ready to pursue new opportunities he previously thought were impossible. Dr. Dalal is spearheading the RUBY clinical trial (sponsored by Editas Medicine) clinical trial at UH, collaborating with transplant, adult and pediatric sickle cell, blood bank, pain management, and the Pediatric Hematology-Oncology Clinical Trials Unit teams. Canaan and his mom are looking forward to representing UH Rainbow in Washington and sharing their story. UH hopes that the information learned in the study will help future generations of people who suffer from sickle cell disease and improve their lives.

During the visit to Capitol Hill, Canaan and Arenda will meet with several Ohio Congressional offices to discuss the role UH Rainbow plays in their unique health journey and participate in a special advocacy event in the historic Ways and Means Committee hearing room, among other important events.