Our son JJ was diagnosed with Hemophilia A and Von Willebrands Disease when he was just a few weeks old. New York City Hemophilia Chapter stepped up to support us as we navigated raising a newborn with two bleeding disorders, in the midst of a global pandemic.

While we started walking in honor of JJ, the Heney Hemophiliacs walk for everyone affected by a bleeding disorder — and in our family, that’s quite a few of us. JJ, Jackie, Peggy, cousin Dean, and Jackie's late grandfather John Finnegan all have Hemophilia A. On top of that, JJ and Jackie also live with a second bleeding disorder, Von Willebrand Disease.

What does it mean to live with a bleeding disorder?

It means our blood is missing the proteins it needs to clot properly.
It means a small injury can become a serious one.
It can mean lifelong joint pain, internal bleeding you can’t see, and slower healing.
It means anxiety — because even everyday life can bring real risks.

How your past donations have helped our family:

When you donate to our Unite for Bleeding Disorders team, your contribution doesn’t disappear into a massive national fund. Every dollar goes directly to our local chapter, New York City Hemophilia Chapter (NYCHC), which supports families like ours every single day.

Your support directly strengthens families navigating bleeding disorders. It empowers kids like JJ, supports parents like us, and ensures that no one walks this path alone.  Because of NYCHC — and supporters like you — our family has already benefited in profound ways:

• Jackie received a scholarship to attend the NBDF Bleeding Disorders Conference in Colorado, where she gained invaluable education and community.
• Educational programs have helped us learn about new and upcoming treatments. 
• Confidence gained by the support of our community helped us advocate for JJ’s prophylactic treatment, which he began this past October.  He is clear of painful hematomas for the first time in his life!  
• Political advocacy - NYCHC advocates for healthcare and insurance initiatives that make sure patients with bleeding disorders can receive lifesaving treatments.
• NYCHC introduced us to opportunities like Double H Ranch, where JJ enjoyed an adaptive skiing weekend and we experienced a family camp designed for kids with chronic conditions.
• Family connection events have helped us bond with other families who understand this journey.
• Young Families Focus Group: NYCHC hosted a focus group planning future programming, including a peer-to-peer mentoring program for families with newly diagnosed children.
• Infusion training with medical professionals has empowed us to take control of our own IV treatments and dramatically reduces emergency hospital visits.

Ways to support our team:

• DONATE: Right here on the Unite for Bleeding Disorders Walk page

• WALK WITH US: Join our team, and walk with us on June 7 at Riverbank State Park in NYC – click "join our team" on this website to register!

• EVENTS:  Join us for TWO different fundraisers  (click links for more info!!)

  • Brews for Bleeders at Sand City South on Sunday, April 26, 2026 12-3pm -- live music by Sunbuzz and special guest appearance by my band, Thundersnow!, Raffles, Drinks, Kid-Friendly fun!   (Check out the photos below for more information)

• Bricks for Bleeders at Bricks & Minifigs:  Pizza dinner, Lego creations, Lego games, Lego fun.....all for a great cause! Drop to kids off for fun, while you enjoy a night out!
  REGISTER FOR EVENT: https://form.jotform.com/260846529489070
  PAY FOR EVENT: https://www.paypal.com/ncp/payment/BP79SWVZSBXJL