By Andrea Joseph, Wildwood Parent
On Friday, April 6, 8th grade student Brandon J. flew to Maryland to speak at a patient-focused drug development panel with the Food and Drug Administration (FDA), advocating for treatments for Epidermolysis Bullosa, a rare genetic disorder that Brandon was born with. The drawback to previous research has been a lack of understanding by the FDA about what treatments are needed to ease the painful symptoms and improve quality of life rather than solely approving (or not approving) a drug based only on clinical data.
EB is a painful and debilitating disorder that causes the skin to tear and blister at a slight touch and requires daily bandaging of wounds, similar to a burn patient. But it also affects internal organs. By presenting in person and sharing their personal struggles with EB, Brandon and the other patients and family members were able to put names to a face and help the FDA understand more fully the daily physical and mental challenges they face and help push for quicker approval of treatments.
Brandon has been an outspoken advocate for EB for many years, speaking in front of his classroom when he was younger, speaking on stage at fundraisers and writing essays about living with EB.
When asked why he wanted to speak to the FDA, Brandon said “because I want help for EB and I want it sooner rather than later. I felt a sense of accomplishment after because I felt like all of us speaking with one voice made a difference.”
My husband and I watched with pride as Brandon demonstrated several life skills and Habits of Mind and Heart such as courage, perseverance, initiative, and Service to the Common Good.
To learn more about EB and ways to help, visit www.ebmrf.org
Click here to view Brandon’s testimony.