Monday, April 27, 2015

Set the Record! Wear the Medal! No Bleeding Disorder Required!



]
(CLICK ON THE IMAGE
ABOVE FOR MORE INFORMATION)


We Need You to Help Us Set the Record!
 Largest Self Care Lesson
Saturday May 2, 2015 at 2pm
New York Marriott at the Brooklyn Bridge
333 Adams Street   Brooklyn, NY

Saturday, April 18, 2015

Set the Record! Wear the Medal! No Bleeding Disorder Required!


http://nychcguinness.eventbrite.com
(CLICK ON THE IMAGE ABOVE TO REGISTER NOW)
 Largest Self Care Lesson
Saturday May 2, 2015 at 2pm
New York Marriott at the Brooklyn Bridge
333 Adams Street   Brooklyn, NY

Please join the New York City Hemophilia Chapter and hundreds of community members as we raise awareness about bleeding disorders and the importance of self-care by establishing a new GUINNESS WORLD RECORDS® title.

We will be attempting to set a first-time world record for the
LARGEST SELF-CARE LESSON. The attempt will be judged by a GUINNESS WORLD RECORDS® Official Adjudicator.

Participants will set the record by learning about infusion
and practicing using a simulated vein.


We need at least 250 participants to set the record –
and it’s a great way for the people in your lives to learn a little bit about infusion. Bring parents, grandparents, siblings, friends, teachers - all are welcome.
You don’t have to have a
bleeding disorder to participate!


Media coverage will be invited, refreshments will be served, exhibitors will be present with information and giveaways, and every participant will receive the medal pictured above
as a commemoration of the event.


There is no cost to participate in this event but
advance registration is required



CLICK HERE TO REGISTER NOW 


For more information call (212) 382-2974.

Tuesday, March 17, 2015

TELL ABC TO STOP SPREADING LIES ABOUT HEMOPHILIA!

On the March 15, 2015 episode of the ABC series Secrets and Lies, a featured character offensively refers to hemophilia as “a nasty byproduct of incest” (see clip here). This blatantly defamatory and insulting dialogue on a popular national television show only serves to broadly spread harmful misinformation about people with bleeding disorders.

Efforts are underway across the country to let ABC know how this harms our community, and we urge all NYCHC members to add their voices.

The National Hemophilia Foundation (NHF) has issued a statement which can be seen here:

http://www.hemophilia.org/…/ABC-Hit-Series-Portrays-Hemophi…

The Hemophilia Federation of America has issued a press release which can be seen here:

http://hfa-hemophiliafederationofamerica.createsend1.com/…/…

ABC Television has a contact form that allows the public to provide feedback about their programming. You can find it here:

http://site.abc.go.com/site/contactus.html

  • Let them know that you are a person with a bleeding disorder, or the relative or friend of a person with a bleeding disoder.
  • Let them know how spreading this kind of misinformation hurts you and people you care about.
  • Let them know that a prompt public apology and a genuine effort to mitigate the damage they have caused is expected.
  • Use Facebook, Instagram, and other social media sites to alert your friends and family.
NYCHC will work to keep you up to date as additional information becomes available. Thank you for your ongoing support.

‪#‎hemophiliaawareness‬ ‪#‎hemophilia‬ ‪#‎nhf‬ ‪#‎hfa‬ ‪#‎abc‬ ‪#‎mediabias‬