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 that everyday life can bring real risks -- even simple things like losing a baby tooth become an emergency.  It means lots of needles -- because our treatments are injections and IVs.  And for a little guy like JJ, thats a lot to handle!

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 taught us about new and upcoming treatments.  This helped us advocate for JJ’s prophylactic treatment, which he began this past October.  He is clear of constant 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.
• 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. We're hoping to start 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.

How to support our team:

• 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!

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

• RAFFLES - You do not need to be present to win!  Text me at 516-521-4105 to purchase tickets today!  Winners will be drawn at Brews for Bleeders.  Click the following link to see the most up-to-date raffle basket images and descriptions: https://nsedd.my.canva.site/heneyhemo

• EVENTS:  Join us for TWO different fundraisers 

  • BREWS FOR BLEEDERS at Sand City South on Sunday, April 26, 2026 12-3pm -- live music by Sunbuzz, amazing raffles, drinks, kid-friendly fun!   (Check out the photos below for more information)

  • BRICKS FOR BLEEDERS at Bricks & Minifigs-- A kids night out: 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 BRICKS FOR BLEEDERS:  https://form.jotform.com/260846529489070
    • PAY FOR BRICKS FOR BLEEDERS  https://www.paypal.com/ncp/payment/BP79SWVZSBXJL