At a “Be Brave & Shave” fundraiser, more than 50 people shaved their heads to raise money and awareness for sickle cell disease on Oct. 13 at Congregation Beth El of Montgomery County in Bethesda. Participants in the fundraiser for Children’s National Health System included parents of patients, supportive friends, family members and Children’s National doctors and social workers.
At the event, 13-year-old Jozlyn Miller, who received a bone marrow transplant at Children’s National Health System to cure her sickle cell disease, met her donor for the first time. The donor, Petra Poker, who lives in Germany, flew in especially for the event to meet Jozlyn.
Poker said she registered for the bone marrow registry after she learned of the urgent need for bone marrow for patients who are African American.
“Currently, there is a lack of African American donors in the marrow pool to treat kids,” said Dr. David Jacobsohn, chief of blood and marrow transplantation (BMT) in the Center for Cancer and Blood Disorders at Children’s National. “Ms. Poker stepped up and gave the ultimate gift — she gave someone life by entering the bone marrow registry so she could serve as a match and then by going through with the procedure.”
Sickle cell disease is a serious blood disorder that can lead to severe complications and fatality. Proceeds will help fund a clinical trial to investigate half-match donor options for children fighting this condition. A successful clinical trial would provide the sickle cell patients and doctors who treat this population with potentially watershed findings. Parents, for example, would be able to donate marrow that could save their children. More transplants could be completed, saving more lives. And the new knowledge and findings generated from such research could help doctors improve transplant outcomes for other disease areas such as leukemia and rare immune disorders.
“Our ultimate goal is to ensure that every child we treat has the best possible chance to thrive,” said Cecilia Lewis, mother of BMT recipients and “shavee.” “That’s why we’re so excited that children, teenagers, women, men, grateful patient families, doctors, social workers and community advocates had the courage to get shaved together. Their support will truly save lives.”
Donations are still being accepted to support more children like Jozlyn, who need bone marrow transplants to cure sickle cell disease. For information, visit http://childrensnational.donordrive.com/event/bmtshave/