Dear Friends of Jacob's Cure,
It is with great hope and appreciation that I announce Jacob's Cure will be closing its doors but not its mission. This is extremely bittersweet because of the enormous growth you have made possible. Simply, our infrastructure can no longer maintain our great work. So while our doors will close, our mission will remain open as we will join forces with a leading non-profit patient advocacy group that raises money and awareness for Canavan and other related genetic diseases.
National Tay-Sachs & Allied Diseases Association (www.ntsad.org) just celebrated their 56th year and is recognized as one of the oldest, most respected, and widely-known genetic disease patient groups. NTSAD is a strong fit for Jacob's Cure; their mission is to lead the fight to treat and cure Tay-Sachs, Canavan, and related genetic diseases, and to support affected families and individuals in leading fuller lives. This amazing organization supports an extensive Research Initiative and annual research grant making process. They also offer family support services, which include a yearly conference for families who are caring for very sick children or whose children have passed. It is an informative, supportive conference that addresses all family members, including grandparents and siblings.
I have been a member of NTSAD's parent network since 1996, so I can personally attest to their ability to serve families well and advance research. By passing the baton to NTSAD, the hope is that the Canavan community will be united and that research and fundraising capacity can be expanded as a single, stronger organization. The Jacob's Cure legacy continues. I would like to encourage you to get involved with NTSAD, whom you will be hearing from directly in the coming months.
Proudly, as a volunteer and with the support of other organizations, I will continue to work with Dr. Paola Leone and her team at a federal level along with NTSAD in their advocacy efforts. I will also continue to meet with key members of congress and Directors at the NIH and FDA to push for funding that is so desperately needed.
Jacob's Cure will disperse the majority of the remaining funds to Dr. Paola Leone's lab at Rowan University School of Osteopathic Medicine to support their great work, which encompasses stem-cell therapies, gene therapies and pharmacological approaches towards treating Canavan disease. In addition, Dr. Leone has had a link with NTSAD through their Scientific Advisory Committee for a number of years. Some funds will go to NTSAD as well as other organizations that support rare disease.
I want to thank each and every one of you for your endless support and generosity. This started with one mom's plea for help, and with your support, we grew to a nationally recognized disease and organization. Your dedication allowed us to DREAM BIG, and I will continue to fight in your honor.
I have had the privilege of seeing the best in people. I have felt your passion to help us eradicate Canavan disease and have marveled at seeing all of your faces at our events year after year. I don't believe there is a more committed group of donors and supporters, and for that I will always be eternally grateful. Thank you for joining me in this journey...I could never have done it without you.
My shoes were to be worn by me alone, but the mountains I climbed and conquered were because I had you by my side.
With deepest gratitude,