Mission
To make quality of life the focal point of treatment for individuals with hemophilia in the 21st century.
“Even if I am only like a little mouse, taking bites around the edge of the cheese, I feel eventually I am going to make a difference. It is going to take a lot of bites and a fair amount of time, but it will happen. Meanwhile, we’ll keep biting away.” John R. Taylor, Jr – Founder
Over the past several months we have received many requests for assistance from families in our community. We believe it takes a village, even $5.00 will make a tremendous difference in the quality of life for people with hemophilia in need. We thank you for all your love, kindness and generosity to help families in need!
Our Vision
We are dreaming of a world with
- A treatment we can all afford
- Prophylaxis for everyone
- Better delivery – no more infusions
- A longer half-life – maybe one pill a month
There are many steps to a cure. Let’s take them.
Goals
- To empower people with hemophilia and their families to act as advocates on their own behalf.
- To help ensure that each individual and their loved ones have the highest standards of product and the best possible quality of life.
Accomplishments
- Monitor and support research.
- Primary source of information nationally and internationally.
- Factor IX News: our educational newsletter responds to needs for information, advocacy, and scientific research exchange.
- Workshops: educate families about the long-term benefits of prophylactic treatment.
- Survey and inventory families. needs and concerns.
- Family-oriented meetings to unite, support, and share treatment methods.
