Current & Former Affiliations
I started attending the center in October 2021, and become a voting member and partner of the organization in February 2022.
Jack's first meeting for adults with Fanconi Anemia was in 2017, where he met a group of over 30 individuals just like him. That was just the beginning since one year later he was invited to serve on a FAdult Advisory Council for the organization has served on since. In 2019, Jack was selected as the winner of the Amy Winn Frohnmayer and Christopher T. Byrd Award for Adults with Fanconi Anemia, which was named after two extraordinary leaders in the FA community who came before him. Jack has traveled across the U.S attending conferences, speaking at fundraisers, and connecting with other individuals with FA.
Jack's journey with Be The Match started on October 25, 2002, when he, 3 years old at the time, underwent a successful Bone Marrow Transplant from an unrelated donor, coordinated by Be The Match. While there's no way you could ever fully repay somebody who saved your life, Jack began advocating for Be The Match at Oakton Community College as a leader of their Phi Theta Kappa Honor Society. This advocacy continued to other colleges and will continue in the future!
At the age of 3, I received a bone marrow transplant from the life-saving stem cells of an unrelated donor. I was given a second chance at life. Today, I help those undergoing what I and my family went through while educating communities and advocating for those who no longer can. I may not fight crime or have big arms, but I’m always fighting for life and encouraging others to save lives. I am...Captain Marrow! My mission is to give hope and guidance to patients and families undergoing medical procedures by partnering with nonprofit organizations, businesses, and families to inspire others to be their own heroes while educating communities about a variety of medical illnesses. I travel to comic cons, hospitals, fundraisers, and conferences around the U.S and publish comic books based on first-person superhero narratives.
As a recently joined member of the Rare Action Network, Jack will join other NORD representatives in planning the 2021 living rare, living stronger interactive virtual forum geared towards individuals and families affected by rare diseases globally.