In March 2016, thousands of Americans nationwide showed off their best "red tie style" by participating in the first-ever Red Tie Challenge during the first-ever Bleeding Disorders Awareness Month. As a result, another "first" occurred: national awareness and understanding of bleeding disorders-like hemophilia, von Willebrand disease, and rare factors deficiencies. Equally as important, the bleeding disorders community finally had a symbol-the red tie-they could call their own and a movement they could rally behind.

 

Now that it is March, it's time to take out your red ties again as the Virginia Hemophilia Foundation (VHF) and National Hemophilia Foundation (NHF) partner to present the 2017 Red Tie Challenge. But the focus of this year's challenge will go beyond generating awareness to asking for donations to fund VHF and NHF's research, education and advocacy initiatives.

  

For over 40 years, VHF has been the leading fight against bleeding disorders in Virginia and, together with NHF-the largest nongovernment funder of research awards, fellowships and grants-we have advanced the standard of care and the quality of life for our community. To ensure we continue to have maximum impact, we are asking Red Tie Challenge takers to, as a first step, donate at RedTieChallenge.org directly to VHF. 

 

Taking Red Tie Challenge is as easy as 1-2-3:

To learn more about the Red Tie Challenge, visit www.RedTieChallenge.org; for information on bleeding disorders and VHF, visit www.vahemophilia.org.

April

GO HERE to see all of our events on our Upcoming Events Page.

On Thursday February 16, the Virginia Hemophilia Foundation hosted an educational dinner to discuss the topic of " Navigating Emergencies and Emergency Rooms". A highly interactive presentation was facilitated by Jennifer Harris, BSN, RN, an educational nurse from Emory University Hospital in Atlanta, GA. The event had a great turn out that included many families. This allowed us to have a rich conversation about real-life emergency situations and how families affected with bleeding disorders have handled them. For example, we learned that many have found it helpful to have an "emergency bag" that contains your medications packed and ready to go.  Other tips included getting to know your local emergency room staff so that you know what to expect from each during an emergency, and preparing for a vacation by familiarizing yourself with local emergency rooms in your destination and even asking your HTC to send them a letter just in case you have an emergency. Thank you to our sponsor Bayer.

Byron Dorgan spent 30 years representing North Dakota in Congress - 18 years in the Senate and 12 in the House. And there's one constituent he thinks of when people ask how ordinary people can effectively lobby their representatives. She was a determined woman whose fight to help her son eventually changed how American health insurance works.

Dorgan told me this story a few weeks ago, when I was working on a piece about the Affordable Care Act's ban on  lifetime limits in health insurance. Next week, as legislators return to their districts for recess and town halls, his advice might prove especially relevant. As David Leonhardt  writes for the New York Times, those meetings will be "a chance for people to make clear the actual stakes in the health care debate."