Jonah’s Just Begun (JJB) and Cure Sanfilippo Foundation are pleased to announce that they will be joining forces as they move forward with the common goal of finding a cure or treatment for Sanfilippo Syndrome.
Formed as a 501(c)3 in 2011 by Jill Wood and Jeremy Weishaar after their son, Jonah, was diagnosed with Sanfilippo Type C, Jonah’s Just Begun was created to support research, fundraising, and advocacy for treatments for both Sanfilippo Type C and Sanfilippo Type D. Due directly to the work done at JJB, clinical trials for both diseases are on the horizon.
As the Treasurer of JJB, Jill has worked tirelessly to drive innovation and change to further
research for Sanfilippo clinical trials for children. One of her visionary accomplishments was co-founding Phoenix Nest in 2014, a biotech dedicated to finding treatments and cures for Sanfilippo Syndrome, where she currently works as the CFO. Going forward, Jill will retain her role at Phoenix Nest while Jonah’s Just Begun will now fall under the nonprofit auspices of Cure Sanfilippo Foundation. Further, Cure Sanfilippo Foundation will now be a member of H.A.N.D.S. (Helping Advance Neurodegenerative Disease Science), an international consortium of patient groups, scientists, and clinicians that work together to drive the science for Sanfilippo Type C.
Cure Sanfilippo Foundation was founded in 2013 by Glenn and Cara O’Neill after their daughter, Eliza, was diagnosed with Sanfilippo Type A. Cure Sanfilippo was formed with the mission to advocate for and to fund research directed towards a cure and treatment options for patients with Sanfilippo Syndrome. The Foundation has raised $7 Million since inception to advance research and bring clinical trial options for Sanfilippo Syndrome.
Cure Sanfilippo President Glenn O’Neill commented, “We are honored to bring on both Jonah’s Just Begun and all of the support and remarkable history that comes with it. With JJB, we further our scope of research into all 4 types of Sanfilippo Syndrome (A, B, C & D). In the past, Cure Sanfilippo has funded smaller Type C projects and research that could help any subtype, but the focus up to this point has been primarily on Type A and Type B. This joining of forces is a perfect fit and puts us in a position to make an even bigger impact on the disease.”
Jill Wood commented: “JJB has been driving the research for Types C and D. Now, Types C and D and JJB/H.A.N.D.S. will get a big boost under Cure Sanfilippo Foundation, as they will help take some of our projects we began, to the next stage. We are combining forces to move therapies forward, faster. This is a great day for Sanfilippo.”
Cure Sanfilippo Foundation is a 501(c)(3) not-for-profit organization dedicated to advocating for and funding research directed towards a cure and treatment options for patients with Sanfilippo Syndrome. Sanfilippo Syndrome, also called MPS III, is an inherited disease of metabolism that means the body cannot properly break down long chains of sugar molecules called mucopolysaccharides or glycosaminoglycans (i.e., GAGs). A genetic defect passed on from each parent results in missing or poorly functioning enzymes needed for cells to work normally. Without these enzymes, cells are unable to break down and recycle cellular waste. Over time, this waste builds up causing cells to act abnormally and then to die. Children with this genetic disease face a progressively debilitating and rapid decline in physical and intellectual abilities, leading to an early death.
For more information on the Cure Sanfilippo Foundation and Sanfilippo Syndrome, please visit www.CureSFF.org. Contact Cure Sanfilippo Foundation at firstname.lastname@example.org.