WASHINGTON, Feb. 25, 2016 /PRNewswire-USNewswire/ — The halls of Congress were the setting for the launch of the Red Tie Challenge, a new movement created by the National Hemophilia Foundation (NHF) and its 51-chapter network to take inheritable bleeding disorders out of the shadows and into the light alongside other chronic diseases, and raise funds for better treatments and, ultimately, cures. The bleeding disorders community is comprised of more than three million Americans who have hemophilia, von Willebrand disease or rare factor deficiencies. These diseases prevent the blood from clotting normally and can result in extended bleeding after injury, surgery or trauma, and can be fatal if not treated effectively.
The Red Tie Challenge challenges individuals and groups to: get creative in showing how they wear a red tie; record and post their “best red tie looks” to their social channels with #RedTieChallenge; and encourage their fans and followers to take it, too, while considering making a donation to support the bleeding disorders community at www.redtiechallenge.org.
“Because blood ties—embodied in the color red and the tie—are what bind our community together, the red tie is the new symbol for the bleeding disorders community,” said Val Bias, NHF CEO. “The color red also conveys strength, leadership, courage, determination and, above all, empathy and love—qualities and emotions that define our community.”
The campaign was officially inaugurated today by more than 300 community members who met with their Members of Congress to urge them to support bleeding disorders-related legislation, the Red Tie Challenge and March as Bleeding Disorders Awareness Month.
Red Tie Challenge microsite and Thunderclap debut
A new microsite — www.redtiechallenge.org — serves as the Red Tie Challenge movement’s official home on the web. Among other features, it includes videos on how to take the challenge and profiles of community members, beginning with actress and comedian,Alex Borstein, best known as the voice of “Lois Griffin” on Family Guy (FOX), and for her work on MADtv (FOX) and Getting On(HBO). Ms. Borstein, a carrier of the gene for hemophilia, has a daughter with hemophilia.
The Red Tie Challenge social media campaign also launched today. Between February 25 and April 17, individuals can visit the Red Tie Challenge Thunderclap page at http://thndr.me/calIw8 and pledge to take the challenge and support the bleeding disorders community by signing up via their Twitter, Facebook or Tumblr accounts. Then on April 17, which is World Hemophilia Day, that message will be mass-shared via their social feeds.
March’s designation as Bleeding Disorders Awareness Month
2016 marks two important milestones in the history of the bleeding disorders community. Following its own annual meeting, NHF will host the World Federation of Hemophilia’s 2016 World Congress in Orlando from July 24-28, the largest-ever gathering of global bleeding disorders experts. 2016 is also the 30th anniversary of President Ronald Reagan’s designation of March 1986 as “Hemophilia Awareness Month.”
To formalize that one-time observance and broaden it to incorporate all inheritable bleeding disorders, NHF worked with the U.S. Department of Health and Human Services (HHS) to have each March recognized as Bleeding Disorders Awareness Month. As a result, this month is now recognized by HHS as an official National Health Observance.
“By celebrating the first-ever Bleeding Disorders Awareness Month in March, taking the Red Tie Challenge and joining NHF’s Thunderclap, you show our community that we are not alone in the fight against inheritable bleeding disorders,” said Mr. Bias. “By making a donation at www.redtiechallenge.org, you help advance the mission of NHF and our 51 chapters.”
Take the Red Tie Challenge, loop-by-loop, in four easy steps!
- Accept the Challenge and get a red tie.
- Get creative and show how you wear that tie.
- Record your best tie look and pledge to support March as Bleeding Disorders Awareness Month, and challenge a few friends.
- Post your video with #RedTieChallenge, challenge your friends and followers, and think about making a donation atwww.redtiechallenge.org.
Acknowledging the sponsors of the Red Tie Challenge
NHF wishes to thank the bleeding disorders community, our 51-chapter network, and the following pharmaceutical companies for making the Red Tie Challenge possible: Alnylam Pharmaceuticals; Baxalta; Bayer HealthCare; Biogen; CSL Behring; Emergent BioSolutions Inc.; Genentech; Grifols; Novo Nordisk; Octapharma; and Pfizer.
NHF is the bleeding disorders community’s advocate™
NHF (the National Hemophilia Foundation) is a 501(c)(3) nonprofit organization dedicated to finding better treatments and cures for inheritable bleeding disorders and to preventing the complications of these disorders through education, advocacy and research. Established in 1948, NHF has 51 chapters throughout the country. Our programs and initiatives are made possible through the generosity of individuals, corporations and foundations, as well as through a cooperative agreement with the Centers for Disease Control and Prevention (CDC). Additional information on NHF can be found at www.hemophilia.org/.
John Indence, Tel. 646-326-5390; 212.328.3763
Dennis da Costa, Tel. 914.645.7553; 212.453.2461
Learn more about inheritable bleeding disorders and NHF at www.hemophilia.org.
Learn more about the Red Tie Challenge at www.redtiechallenge.org.
Join the Red Tie Challenge Thunderclap at http://thndr.me/calIw8.
Infographic – http://photos.prnewswire.com/prnh/20160223/336673-INFO
SOURCE National Hemophilia Foundation