As the end of summer draws to a close, I send my baby off to his last “first” day of school, I am once again beginning preparations for our Annual Walk For PNH in NYC.  
As some of you may know, I started the Walk for PNH in Riverview FL, 13 years ago for my dad.  After countless years of frustration with doctors not knowing how to handle my dad’s condition and poor treatment options, I finally just got fed up.  I remember, I was sitting at my desk, looked over at my co-worker Julie, and out of the blue just said “I need to do a Walk”.   I had decided that it was time to do something to spread awareness about this terrible disease.

I had just read an article in the AAMDS newsletter (yes we had paper newsletters back then) about this girl, Sarah Higgins, who had recovered from Aplastic Anemia and then developed PNH – the same as my dad.  She had recently created the PNH Research & Support Foundation.  I decided to reach out to her to see if I could donate the monies we collected from the Walk to her Foundation.  She was of course thrilled and with the help of a donated flight, I was able to fly her down to attend.  So, in April of 2006, with the help of my co-workers, my family and numerous community donors; we were able to raise over $5,500 with a grand total of just 25 walkers!!  

Alexion Pharmaceuticals had also attended our Walk and afterward offered to sponsor a second Walk in New York City (where Sarah lived and went to school).   In September of that same year, we had the 2nd Walk For PNH at Riverside Park in NYC, where we had over 100 walkers and proceeded to raise over $55,000!!!  

This year will mark our 15th Walk for PNH.  We are the largest fundraiser in the United States for PNH Research and patient grants!!!

We have since grown and teamed up with AAMDS but I continue to be a part of the planning committee; manning my post every year for set up, take down and registration.  It is one of my favorite days of the year and I really enjoy seeing all of the families and patients together, collaborating and having a nice time.  I am especially grateful to my own family and friends who show up periodically to help out with registration and support this fantastic cause.

This year my goal is for our team to raise $5,000.   We are Dabba’s Darlings and we walk in honor of my dad.  If you happen to be in NYC on September 15th, please come by the 79th street entrance of Riverside Park and say hi!  We will be serving lunch and passing out t-shirts for all who attend.

When you are part of a rare disease family, it is so important to have a day where people can get together; share their stories and feel a part of an exclusive community.

Thank you from the bottom of my heart for all of your support and for taking the time to learn more about what PNH is.

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.