Barry has hemophilia, HIV, and hepatitis C.  He discusses the realities of being diagnosed HIV positive as a teenager and the many challenges he has faced throughout his life.  Barry hopes by sharing his story he will empower others to share theirs.

Derick Stace-Naughton, a young man with von Willebrand’s Disease, started the group “Students for the Awareness of Bleeding Disorders.”  Derick wants YOU to urge your member of congress to co-sponsor H.Con Res.147.  H.Con.Res.147 promotes screening for vWD.

The Voices Campaign is HFA’s grassroots advocacy initiative aimed at raising general public and legislator awareness of the bleeding disorders community through personal stories from affected individuals and their families.  In the approaching national debates regarding health care reform, HFA wants to ensure the bleeding disorders community is heard, and through the Voices Campaign, members of the community can learn how to better advocate for the community through effective sharing of personal stories.

Yes, I have a right to be here! It is the 1st amendment in the constitution. I have right to petition government for any injustice I may feel is evoked on me. I can do this alone or in a group. I choose to voice my issues with the Hemophilia Community. (Your voice is louder in numbers.) Many issues face me and others my age, living with a chronic illness. If I do not speak up and act on my right, I have no one to blame when my future becomes more difficult.

I learned that legislators do want to hear from me. They want to hear from every person young and old. They need to hear from us! There are many topics and situations affecting people throughout the United States. There is no other way for legislators to know what is important to us. If they do not know what benefits programs or laws give us, they will not continue them. If they do not know what problems we face, they cannot correct them.

Everyone has a story to tell. That story is their life and how legislation helps or hinders their life. You could live on a farm and be struggling financially in need of a tax break. You could be in a wheelchair and need help making access to stores easier. You may be a conservationist and need help protecting our natural resources. I need to be protected too. To help yourself and others, use the first amendment it is our right.

Download Destiny’s Story Here

DENVER, CO–Nathan’s son Thomas Wilkes was born with severe hemophilia, which puts him at risk for major internal bleeding and for which he must receive nearly $1 million in healthcare costs each year to avoid death or serious disability.

Watch this important video to see how the private health insurance industry cares only about profits, NOT patients.