Friday, June 24, 2016

Travel Grants Now Available to Attend the NHF Annual Meeting

Are you attending this year's National Hemophilia Foundation Annual Meeting in Orlando? If so, the chapter wants to help send you there. Click here to download the Travel Grant Application. 

Applications must be received by July 1st, 2016 to be considered and should be emailed directly to or mailed to 109 W. 27th St., Suite 11B, New York, NY 10001.

$1,000 Travel Grants Available for Local Individuals or Families

The New York City Hemophilia Chapter is committed to ensuring local families have the opportunity to attend major national hemophilia meetings and has budgeted to provide financial assistance to a limited number of families. Assistance grants are offered to help cover travel, hotel, and registration for individuals or families to attend the NHF Annual Meeting.  The application for assistance is now open to anyone in the NYC area with a bleeding disorder, Hemophilia, Von Willebrand disease, etc. This year the chapter is able to provide $1,000 grants to five individuals or families.

Will we see you in Orlando?

Join us in Orlando for three days full of educational sessions networking opportunities, and access to a giant exhibit hall. Registration to the NHF Annual Meeting includes entrance to the Opening Session/reception, Awards ceremony, educational sessions and an exciting Final Night event. For more information about the NHF Annual Meeting, click here.

Attend the NHF Annual Meeting

NHF’s 68th Annual Meeting will be held July 21, 2016 – July 23, 2016 in Orlando, Florida at the beautiful Gaylord Palms Resort & Convention Center.
Click here to register.

Travel Grant Selection Criteria:

1)    Priority will be given to first time attendees and individuals with specific needs.

2)    You must be willing to share your experience with others by writing a blog post, an article in the chapter newsletter, volunteer at an upcoming chapter event or program or participate on a chapter committee.

3)    Deadline to apply for financial assistance is: July 1st, 2016 – please use this form to apply.

4)    Recipients will be notified the week of July 8th, 2016.

5)    Attendance to the educational sessions and a chapter dinner offered at Annual Meeting is required to receive travel grant funding.

6)    NYCHC has limited travel grants available and the funds are on a first come, first serve basis.

Please call me at 571.268.1443 or email me at if you have questions.

Tuesday, June 21, 2016

Summer's here--it's time for Bleeding Disorder Camp!

Water trampolines, giant swing rides, and late night campfires… what could be better?

Summer is here, and that means it’s time for CAMP!

If you are a kid with a bleeding disorder, or have a son or daughter with a bleeding disorder, it might be hard to imagine going away to camp.  That’s why there’s HEMOPHILIA CAMP!  
Hemophilia/bleeding disorder camps serve kids with all bleeding disorders and their siblings.

Group of happy campers at Camp Little Oak.
The first time I went to bleeding disorder camp, my parents were so nervous that they stayed in upstate NY so they wouldn’t leave me alone.  In the end, they had no reason to worry.  Hemophilia camp is one of the safest and most fun places for a kid with a bleeding disorder.  Infusions?  Totally normal.  Bleeds?  Everyone understands it—no big deal.  The nurses and staff there are incredibly knowledgeable about bleeding disorders, helpful with infusions and self-infusion teaching (if you want to learn!), and, of course, caring and wonderful.

Jumping into the lake during swimming time!
Days are filled with regular camp activities, where bleeders and siblings get to feel just like regular kids.  At my camp, Camp Little Oak, there’s swimming, field games, arts and crafts, boating, and even a community service project.  Plus, we have a trip to a ropes course, a giant water trampoline on a lake…and infusions for anyone who needs them beforehand!!!
Harnesses on and ready for the Ropes Course!

I have gone to camp for nine years as a camper and am going on my second year as a counselor.  If you are even considering sending your child to camp, I cannot recommend it enough.  The self-confidence and sense of community I have gained from my years at Camp Little Oak have been invaluable. 
There are 2 camps in New York just for bleeders and siblings, ages 7-17.  There’s still time to apply! 

Camp High Hopes (Boys Camp)
  • Boys with Bleeding Disorders + Brothers
  • 2016 Dates: July 24-July 30
  • Application Due: July 4, 2016
  • Website:
  • Application available on website.

 Camp Little Oak (Girls Camp)
Camp High Hopes campers play in the field
  • Girls with Bleeding Disorders + Sisters
  • 2016 Dates: July 31-August 6
  • Application Due: July 1, 2016. 
  • Website:
  • Application available, email 

Two other camps in the area, Double H Ranch and Hole in the Wall Gang Camp, accept campers with all serious illnesses, including most bleeding disorders.   Both camps run multiple sessions throughout the summer.  Hole in the Wall’s application is closed for this year.  Double H may have limited space: contact them and ask to speak with the admissions office.  Click Here for Double H Ranch’s website and Click Here for Hole in the Wall’s website. 

If you have any questions about the camp experience, or about Camp Little Oak specifically, please email me at

See you at camp!

Wednesday, June 8, 2016

Join Us on the Farm! NYCHC's First 2016 Teen Event

Get ready for the first NYCHC teen event of 2016!  On Saturday, June 18th at 10 AM, join a group of bleeders and their siblings ages 13-19 for a day on Brooklyn's Youth Farm.  A great way to kick off summer, enjoy the outdoors, and spend time with the bleeding disorder community!

Check out for more info and to register.

See you on the farm!

Tuesday, June 7, 2016

11th Annual Hemophilia Walk a SUCCESS!

Walk manager Jeri Krassner and volunteers staff the VIP
table and hand out crowns to VIP Team Captains.
On June 5th, 2016, hundreds of bleeders, family, and friends filled Riverside Park to walk for bleeding disorders.  Over fifty teams walked this year!  Seventeen of these teams were VIP Teams, who raised over $3,000 each for the walk.  These teams received a grand welcome, complete with a red carpet, goody bag, picture frame, and trophy. 

Another new addition for this year was celebration beads.  Each color bead signified a different type of person in the bleeding disorder community—for example, purple is hemophilia and red is a person with inhibitors.  Walkers proudly donned many colors to show their support! 

Members of Tyler's Tributes and Team Bayer
choose their celebration beads.
Right before kickoff, the chapter presented to Melissa Penn the Founder’s Award.  The award honors her efforts in starting the Walk here in New York, which has now spread to dozens of chapters across the country and raised over $15 million dollars in total over the years.  Hannah Marie Tokiwa, a 10-year-old girl with Von Willebrand Disease kicked off our walk, with a story of how she raised over $500 for bleeding disorders by making a lemonade stand.  

Because of impending rain, all walkers participated in the 1 mile walk, with cheerleaders and Copiague Hip Hop team cheering them on along the way.  The weather held out long enough for everyone to reach the finish line dry.  The walkers were greeted by ice pops, a magician, and salsa dancers to end the day!  

Two cheerleaders encourage Walkers along the Route.
Salsa dancers teach their moves from the stage to a large crowd after the Walk!

In total, the Walk raised over $313,616.00 as of June 7th!  Thanks to all our teams and walkers who raised money and came out to walk…we could not have done it without you!!!

NYCHC would like to thank all our sponsors: our national presenting sponsor, Baxalta; our local presenting sponsor, Novo Nordisk; and all our gold, silver, bronze, kilometer, and in-kind sponsors.