Jonathan James is determined to make his life count. He is one of the rare survivors of hemophilia over the age of 30 who did not contract HIV or a form of hepatitis due to unfiltered blood transfusions during childhood. Considering he was repeatedly exposed to blood-borne viruses and never infected, he is something of a superhero. And Jonathan is dedicated to helping others.
With his wife, Carla, this Baton Rouge resident founded the nonprofit Hope for Hemophilia in 2009 with the goal to aid families struggling with the disease. The nonprofit provides education and offers practical and financial help. Today’s synthetic drugs for hemophilia no longer expose patients to tainted blood, but monthly prescription costs can reach $100,000. Really.
“After going through struggles of our own, we had the big dream to help other families,” says Jonathan. Over the past few years, the organization has aided families with financial support to cover utility bills, travel expenses when related to surgery, health insurance premiums, education costs and more. “We understand hemophilia. More specifically, we understand crisis in hemophilia.”
Now in its fourth year, Hope for Hemophilia has grown to such an extent that Jonathan is leaving his job as a financial adviser and becoming its executive director. He travels coast-to-coast speaking about life as a hemophiliac, with the goal of educating younger generations and encouraging parents. He and Carla, with four children under the age of 10, believe that they have been blessed beyond measure and want to extend their optimistic outlook to others.
“We desire to be a conduit of hope, strength and resources for people living with hemophilia and their families,” says Jonathan. “We are making a difference.”
For more information, visit hopeforhemophilia.com.