Posted on July 3, 2012
Welcome to CureNFwithJack!
We have created this website to provide awareness about Neurofibromatosis (“NF”), a genetic disorder which has affected our son Jack. We hope that creating awareness of NF, bringing people together, and supporting the medical community in its research endeavors will lead to the day that NF no longer exists. Please read and learn about NF, Jack, the local community, and what you can do (no matter where you live or who you are) to help change the face of this disorder. CureNFwithJack.
Right now, Jack is raising funds to support the Drug Discovery Initiative through the Children’s Tumor Foundation (“CTF”). Jack is currently raising funds for this program through his Fourth Annual CureNFwithJack Golf Classic (see “Upcoming Events” on the right side of the page). We are truly grateful for the help and support that we have received since our journey began . . .
Nationally, this is a time of hope and promise. Pharmaceutical companies are recognizing the potential in a long-neglected market – rare diseases – which are defined as a disease that affects fewer than 200,000 Americans, or an estimated 250 million people worldwide. Neurofibromatosis falls under this category. Importantly, Congress recently introduced the Creating Hope Act, a bipartisan senate bill which seeks to support and encourage pharmaceutical and biotechnology companies focus on developing orphan drugs to cure rare diseases.
Support is always needed to urge Congress to continue to support the Congressionally Directed Medical Research Program – the Army’s NF Research Program. The research supported through this Program seeks to bring an end to NF, and will affect not only those suffering from this disorder but also stand to benefit the 175 million Americans over 65 million individuals suffering from cancer, brain tumors, heart disease, memory loss, and learning disabilities. A letter from you to your legislators urging their support of the can make a difference. Please support these endeavors to help cure NF with Jack (To learn more information, read “In the News” and “What You Can Do”).
Thank you for your interest and support.
Jake Burke, Beth O’Brien Burke, and family