Monday, January 26, 2015

Juno is Coming! Be prepared!

As you probably know, Winter Storm Juno is on its way. We encourage you to be prepared and stay informed. You should have food, a flashlight and batteries, and of course clotting factor and other needed medecines and supplies on hand.

The National Hemophilia Foundation has provided information on Emergency Preparedness which appears below.

As always, please refer all medical questions to your Treatment Center or healthcare provider, or in case of a medical emergency, call 911.

For the latest information about the approaching storm, school closings and other important information,  please visit, and stay tuned to TV and radio broadcasts. Those who do not live in New York City may want to consult the website and other resources made available by their local municipality.

Please let us know if there are any ways we may be of assistance to you or your family.  Stay warm and stay safe!

Emergency Preparedness

The four stages: Prevention, Preparedness, Response and Recovery

• Have both an individual and family/household preparedness plan

• Know your children’s schools’ emergency plans, your work and home care emergency plans

• Designate a central meeting place where all family members can find each other—a rendezvous point

• Create a telephone check-in point with an out-of-town relative in case phone lines are not working locally

• Provide your out-of-town contact information to your HTC and chapter; keep this contact info updated

• Know your exit points both at home and at work/school and how much time you need to get out. Prepare for any physical challenges that you or other family members may have

• Footwear—make sure you have comfortable footwear at your workplace/home or in your car in case evacuation is necessary

• Have an extra supply of medicine—not just factor but all necessary medications

• Have a full gas tank and extra water, food, clothes, diapers, flashlight, batteries, cell phone charger (car adapter and 110 volt), camp stove with proper fuel, fans/heater, generator, etc., ready at all times

• Have a way to charge your cell phone without electricity

• Program your emergency contact into your cell phone under “ICE” (In Case of Emergency) so emergency responders know whom to call if needed

• Gather your important documents, each family member’s medical records and insurance information in a secure, waterproof container to put in your go-bag

• Have a go-bag ready with your important documents, extra factor and other medications

• Have NHF’s HANDI phone number and Web site in your go-bag: 1-800-42-HANDI,

• Practice your emergency plans both at home and at work; make sure there is a yearly orientation for everyone and brief any new employees. In both your home and work setting, know who has which responsibilities: who will get the factor, who will get medical records and know where these things are all located (in your go-bag)

• Review communication pathways

• Form a block or neighborhood association, discuss preparedness and general security for the area, and establish a network for looking in on neighbors

• Make sure your HTC knows where you will go in an evacuation and that you know its emergency plan as well

• Stay healthy—sound body, sound mind will serve you well in an emergency and everyday. Practice staying as healthy as you can—Do the 5!

• Practice your individual plan and then review for improvements and practice again with the improvements


• If officials tell you to evacuate, evacuate early!

• Notify your HTC and chapter as to where you are heading

• Activate all the steps you have practiced with your family/household and at your work place

• Assist neighbors according to your neighborhood association planning

• Make sure you have several ways of communicating in case you get separated from any family members or need to reach your HTC or homecare company

• Contact your chapter and HTC when the event is over and you have returned home (if you have evacuated previously)

Psychosocial Preparedness

• If your life is in balance before, it’s much easier to maintain balance during and after a crisis

• Post Traumatic Stress Disorder (PTSD) is real—know the signs, it can happen to both consumers and providers

• All people in a crisis may have delayed onset of symptoms or varying duration of symptoms

• PTSD has age-specific features, e.g., children may become quiet, engage in repetitive play, have nightmares, psychosomatic complaints, difficulty concentrating, show diminished interest in activities, exhibit regression to earlier stages of development, etc.

• Being prepared is the best therapy

• Caregivers and family members need to recognize their own needs, set limits and take time to care for themselves

• After the event, participate in your chapter and/or HTC debriefings regarding everyone’s response to the emergency.


Friday, January 23, 2015

Join Un In Washington!

Washington Days, the National Hemophilia Foundation's annual grassroots advocacy event, will take place from Wednesday, February 25 until Friday, February 27, 2015 at the Crystal Gateway Marriott in Arlington, VA. This is your opportunity to join others from the bleeding disorders community in Washington, DC, to tell elected officials in Congress about the issues that affect you and your family.

The Washington Days program will begin with a first-time attendee workshop on Wednesday afternoon. An interactive review of the key issues for all participants will take place Wednesday evening and will be followed by a Welcome Reception. On Thursday we hit the Hill for a full day of face-to-face meetings with members of Congress and their staff. Dinner on Thursday will again be dedicated to celebrating the advocacy efforts of our volunteers in their local communities. We close on Friday after the State Advocacy Workshop, a training program that explores state-specific issues and improves our effectiveness on the state level.

This year's program will also feature a National Youth Advocacy Summit for ages 16-24.

It's important that we send a strong group from across the Greater New York City area to make sure our voices are heard!

There is no cost to participate in the actual programs. NHF has secured a discounted hotel rate of $189 per night plus applicable taxes. However, you must register by Friday, January 30, 2015 to receive this rate. Information explaining how to reserve a hotel room under the NHF room block will be available in your confirmation e-mail following submission of your completed registration form.

Limited funds are available through NYCHC to cover a portion of the hotel and transportation expenses for community members who want to participate. If you are interested in participating and would like to request this assistance, please send an email to

Monday, January 19, 2015

2015 New York City Hemophilia Walk - Our Tenth Year!

Ten years ago, a handful of New York families and friends affected by bleeding disorders went to Riverside Park and started the first Hemophilia Walk. We realized that by standing together we could make a difference for ourselves and our children. There was excitement in the air that first beautiful day, and the promise of a better tomorrow. Many of you were there with us, and many more joined in the years that followed.

Ten years later, look what we have achieved:
  • The New York City Hemophilia Walk now raises more than $250,000 a year for education, advocacy, and research leading to better treatments and a cure. Millions more are raised by nearly thirty Walks across the country that all started right here in New York.
  • The New York Hemophilia Chapter, which started two years after the first Walk, now organizes a series of community programs and events all year long, including our Spring Event at the Bronx Zoo, Education Day and Holiday Party at the Crowne Plaza Times Square, and many more. Hundreds of families attend these programs where they receive valuable information and share strength and support.
  • Our advocacy efforts have allowed us, working with coalition partners across the state, to pass legislation improving access to care for our families.
  • Our Walk efforts have enabled research programs leading to advances in knowledge and treatment. This is an exciting time for our community, with new and better products on the market and many more on the way.
These are your achievements!

Our Tenth New York City Hemophilia Walk will take place on Sunday, May 31 in Riverside Park. Whether you've been with us from the beginning or you are new to the Walk, this is the year you won't want to miss! Join us in making this the biggest, most exciting, and most successful Walk ever! We're challenging this community with an ambitious goal: 2,000 walkers and $300,000! We know you can do it!

There are so many ways to help, from starting a Walk team and signing up friends and family, to volunteering the day of the event, and so much more. If you’d like to get involved, please click on the link below and answer just a few questions about your experience with the Walk and your interests for this year.

If you have any questions, please contact us at, or call (212) 382-2974. We're so delighted to have you with us, and we look forward to seeing you soon!

Monday, December 1, 2014

It's Giving Tuesday

It's Giving Tuesday
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We have a day for giving thanks. We have two for getting deals. Now, we have #GivingTuesday, a global day dedicated to giving back. Today, Tuesday, December 2, 2014,nonprofits, families, businesses, community centers, and students around the world are coming together for one common purpose: to celebrate generosity and to give.

It’s a simple idea. Just find a way for your family, your community, your company or your friends to come together to give something more. Then tell everyone you can about how you decided to give. Join us and be a part of a global celebration of a new tradition of generosity.

This is an opportunity to give much needed funds, volunteer hours, or both to the causes dearest to your heart. Of course, all of us at New York City Hemophilia Chapter hope you will remember our efforts on behalf of families affected by bleeding disorders. But whatever causes you choose to support, we hope you will help us spread the word to the entire community about the importance of giving.

If you'd like to support our efforts, you can make a secure online contribution or find out about opportunities for volunteering by clicking on the appropriate link on our
"YOU CAN HELP" page.

We are also very excited that we have begun planning our 2015 New York City Hemophilia Walk - our tenth year!  The Walk will take place on Sunday, May 31st in Riverside Park.

We need everyone to get involved! You can sign up to receive information about teams, volunteer and much more by CLICKING HERE.

Thank you for celebrating Giving Tuesday with us, and for supporting this community all year long!