Thursday, April 28, 2016

The Secret to Fundraising for a Walk

Does the thought of asking people for money make you cringe? Think fundraising is not for you? THINK AGAIN! I am a member of one of the most successful Walk teams in the country, a team that on average brings $20,000 a year to help the bleeding disorder community, and I do NOT like to ask people for donations. My hemophiliac daughter is a successful college student and all-around awesome individual. Her life has been improved with advances in research and through educational and support programs- all made possible with the help of donations, large and small. So, even though I don’t like asking, I know that so many people will benefit from the money raised, including my own daughter, that it propels me forward. 

That’s the secret of my fundraising success: I get up the courage to ask, and I ask again. I ask on Facebook, I ask through email, I ask in person. I ask old friends and new friends and co-workers. People really do want to help. And I understand when people have their charitable dollars allocated elsewhere, and seek out those who don’t already have their own ‘cause’. 

I explain the reality of hemophilia to people who don’t understand. They see Rose, as she is, a vibrant Ivy League student ready to conquer the world. But they don’t see behind-the-scenes infusions and bleeds and pain and expense of having a bleeding disorder. Social media tends to focus on the more glamorous parts of our lives and people need to be reminded that people with hemophilia really do suffer and have challenges. Modern medicine has allowed people with hemophilia in the US to live quality and long lives. But still, there is no cure. 

Be creative with your fundraising asks. When Rose was younger she chose to have some birthday parties asking for donations in lieu of presents. And often the guests would surprise Rose by bringing a small gift and giving a donation. This year I partnered with a local salon, Salon Martone, to offer free services to those who donate to my page. You will be surprised and your heart will glow when you see how many people are willing to support your cause. Of course, there will be some disappointments too. Don’t be discouraged! Keep asking. And remember that every dollar makes a difference. 

Set your goal high! People will want to help you reach your goal. Think you can raise $500? Put your goal at $1000 and watch how quickly you will exceed your initial expectations, and you will be amazed at people’s generosity. The New York City Hemophilia Chapter is an incredible organization that is involved in so many things in the bleeding disorder community- education, outreach and programming as well as research. They support people with bleeding disorders and the families who love them. Let’s do our part and help make 2016 NYC Hemophilia Walk the best ever. Start your fundraising today, or donate to my page (I had to get my Ask in somewhere!)

For more information or to form or join a team, please visit

Wednesday, March 16, 2016

NYCHC Names New Executive Director

Dear Family and Friends of the Bleeding Disorder Community,

As board members of NYCHC, it is our duty to look after bleeding disorder-related needs of our community, while upholding the integrity and viability of our collective organization that serves us. 

Jeremy Grifffin
With this in mind, today, it is our great pleasure to announce the hiring of Jeremy Griffin to the leadership post of Executive Director. 

Read the press release here

This is an important year for NYCHC and you, as a community member.  If you were able to join us for NYCHC’s first VWD retreat, or last weekend at our kick-off brunch event in support of the annual NYC Hemophilia Walk, you were able to witness first hand that our energy and enthusiasm levels are pacing at an all-time high.  We look forward to continuing the momentum we’ve built together and introducing you to Jeremy. 

This first opportunity to shake hands is coming up quickly on Sunday, April 17.  Save this date and RSVP to attend NYCHC’s Spring Event at the New York Hall of Science at:
We look forward to offering a warm welcome, don’t miss it!

Your NYCHC Board of Directors:
Wendy Chou, President 
Bradley Schoenfeld, Vice President
Matt Porges, Treasurer
Daniel Kraus, Secretary
Kelly Anne Ambrosio, RN
Melissa Penn JD, MPH 
Sarah Asekoff Schapiro
Aliana Soto

Monday, March 14, 2016

Join Us on April 17, World Hemophilia Day, at the NY Hall of Science!

The New York City Hemophilia Chapter invites you to celebrate World Hemophilia Day with us at our Spring Event at the New York Hall of Science on Sunday, April 17, 2016 at 10:30 am. 

The event ticket includes:

  • Admission to the Hall of Science
  • Over 450 fun, hands-on exhibits for all ages
  • Delicious lunch with pasta and kid-friendly options
  • Amazing 3-D Film
  • Playground and mini-golf
  • Much more!
There is no charge for this event - it's free!. However, participation is limited to people with bleeding disorders and members of their immediate family.

Please reserve your tickets by Friday, April 8th.

If you have questions or need more information, please contact Jeri Krassner at or at (917) 597-7256.

We look forward to seeing you on April 17 at the New York Hall of Science!

Announcing Our 2016 Walk Co-Chairs

NYCHC is pleased to announce that Matt Porges and Julia Martin Alvarez will serve as the Co-Chairs of the 2016 NYC Hemophilia Walk.

Matt is NYCHC’s Treasurer and a member of the Board of Directors. Matt has led “Team Good Blood,” one of the top fundraising teams.  He has also served as Co-Chair of the Annual Gala. Matt is a resident of Brooklyn and a lawyer in private practice. He has severe hemophilia A.
Julia is the mother of Rodrigo, a six year old boy with hemophilia A. She is originally from Spain. She and her husband Alfred, who is originally from Austria, have lived in a variety of countries due to her husband’s work, which has now brought them to New York City. Julia has been very active with the hemophilia associations in every country they have lived in and is excited to take on this import role with NYCHC.

The NYC Hemophilia Walk will take place on Sunday, June 5 in Riverside Park. For more information or to form or join a team, please visit