As some of you know, I started the Walk for PNH for my dad, 12 years ago in Riverview, Florida. We had about 25 walkers attend and raised $5,500 for the PNH Foundation. In September of that same year, Alexion Pharmaceuticals graciously offered to sponsor a 2nd Walk For PNH at Riverside Park in New York City. We proceeded to raise over $55,000 that day and have been doing it there ever since!!! This year will mark our 14th Walk for PNH which has become the largest fundraiser in the United States for PNH Research and patient grants!
Paroxysmal Nocturnal Hemoglobinuria (PNH) is a rare, life-threatening blood disorder characterized by chronic red blood cell destruction. The only cure for PNH is a bone marrow transplant, a procedure which is very risky and is only an option for a small percentage of patients who are lucky enough to have a bone marrow match.
Over the years, our Walk has raised hundreds of thousands of dollars with all monies passed on to help fund the critical research urgently needed to find a cure for this rare disease. We are also able to provide grants for patients and families with disease-related expenses that are not covered by insurance.
Jim, Nate and myself will once again travel to NYC in September to work the event. I encourage all of you to click on the link below to check it out. Any and all support is greatly appreciated. Whether you give a financial donation or just take a few minutes to learn a little more about PNH, I am grateful to you for doing so! If you would like to donate our team is Dabba’s Darlings!
Also – here is a video to learn a little more about it….
Also, a big thank you goes out to our partner, AAMDSIF for their continued support of our annual event. https://www.aamds.org
~Thank you as always, to everyone for your love and support~
Jim, Erin & Natester