Thanks in large part to your help and generosity, we were able to take several important steps forward since our first “Slam Dunks for Sam” event in 2016. Specifically, we made significant progress in 3 critical areas:
- New $100,000 APS Type 1 Research Grant. On Rare Disease Day (February 28, 2017), with funding from the APS Type 1 Foundation, including your generous donations, the National Organization for Rare Disorders (NORD) awarded a $100,000 research grant to Dr. Maureen Su, M.D., at the University of North Carolina, to study “Thymus Transplantation for APS1.” We are particularly excited about this award because of its narrow focus on realizing a cure for APS Type 1. Please see the Press Release for more information.
- Second International Symposium on APS Type 1. From July 13 to 15, 2017, at Stony Brook University in New York, the APS Type 1 Foundation, again with support from your donations, is hosting its second bi-annual symposium to bring together not only doctors and researchers from all over the world, but also patients and their families. The first symposium in 2015 in Toronto, Canada, was a huge success and a pivotal experience for our family. Since the 2015 symposium, the collaboration among the key opinion leaders and researchers of APS Type 1, many who met each for the very first time in Toronto, has been staggering. Collaboration is sure to accelerate advances in treatments and a cure. For additional information, please click here.
- Rare Disease Registry. In collaboration with NORD, the APS Type 1 Foundation, including Robin Finch who is spearheading this project, is developing an online registry for APS Type 1 patients. This is a critical step towards not only finding a cure, but making day-to-day life easier for patients and families. Registries can provide health care professionals and researchers with first-hand information about people with certain conditions, both individually and as a group, and over time, to increase our understanding of that condition. Registries of rare diseases, such as APS Type 1, have proven to be a necessary stepping stone on the path to new treatments and finding a cure. The Foundation plans to launch the first phase of the registry at the 2017 symposium, with a goal of expanding it to become a bio-repository in the future.
