My name is JJ Heney. I am 6 years old and my team,  Heney Hemophiliacs is participating in the Unite for Bleeding Disorders Walk again this year! It's a day I look forward to every year. My mom Jackie, my Gigi Peggy, my cousin Dean, and my Great Grandpa John Finnegan, and I all have Hemophilia A. On top of that, Mom and I 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.

Why your support matters:

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, NYCHC, which supports families like ours every single day.

Mom and Dad have been involved the New York City Hemophilia Chapter (NYCHC) and the National Bleeding Disorders Foundation (NBDF), and learned how to advocate for me. I used to be covered in painful hematomas.  My legs were always sore.  They started to advocate for prophylactic treatment for me, and my Hemophilia Treatment Center agreed it was time! Now I take medicine called Hemlibra that helps my blood clot better. Every two weeks Mom or Dad give me an injection, and I feel so much better!  After the first few weeks, I looked at my legs and couldn't believe they were clear of bruises.  I told everyone that my legs didn't hurt anymore!

Because of NYCHC--and supporters like you, here are some cool things I've done recently:

• Educational programs helped us Mom and Dad advocate for my Hemlibra medicine!

• NYCHC introduced us to Double H Ranch, where I got to go to ski camp! I never thought I'd get to learn how to ski in a safe way...but I had two private teachers dedicated to me.  We made s'mores and did camp songs and games each night. It was the best weekend ever!

• I've met friends.  I've met other kids who have hemophilia like me! We got to talk about where we like to get our injections.  I used to only like my shots in my arm, but after talking to another boy who said the thigh hurt less, I was brave enough to try my leg and now it's my favorite spot! Easy peasy!

• Infusion training: I've gotten to learn how to do factor infusions. I'm still learning on a dummy hand, but one day I'll learn how to really give myself my own factor!

• Bronx Zoo Day: Every year we go to the Bronx Zoo with NYCHC where I get to see friends, eat a yummy lunch and visit the animals!

• Education Day / Holiday Party at the NY Hall of Science:  I got to decorate cookies, explore the museum, hang out with friends AND I got to meet Santa.  He even gave me a present!

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

• EVENTS:  Join us for TWO different fundraisers 

  • BRICKS FOR BLEEDERS  Thursday May 21, 6-8 pm at Bricks & Minifigs-- A kids night out: Pizza dinner, LEGO fun & games.....all for a great cause! Drop off the kids OR stay and play!  Click here to register!​​​​​​​

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