Reeve Foundation Paralysis Community

Welcome to the Unite 2 Fight Paralysis (U2FP) thread in the Advocacy Forum.  U2FP was founded in 2005 by 3 women from the paralysis community – two with cervical spinal cord injuries and one whose son has a quadriplegic injury.  Our mission is to unite all those affected by paralysis and empower them to advocate effectively for therapies that restore physical ability.  We believe that advocacy is an empowering experience for people who often feel helpless and frustrated when struck with a spinal cord injury.

In 2006 we introduced Working 2 Walk (W2W), a Science & Advocacy Symposium where research science meets the consumer.  At Working 2 Walk, people who are living with paralysis have a unique opportunity to meet with the scientists who are working to bring curative therapies to reality.  The Symposium was held in Washington, DC, for the last 3 years, with a particular focus on passage of the Christopher & Dana Reeve Paralysis Act.  Our efforts were rewarded when the Act was signed into law last March.  This year Working 2 Walk will be offered in Chicago in August.

In this thread we hope to foster a lively exchange of information and strategies that will strengthen the advocacy movement.  As a community, we must build our voice and visibility, develop unified and consistent messages, and commit to a long-term effort of fundraising and advocacy.  Together we can achieve our goal of restoring healthy bodies to survivors of paralysis.  Let’s get started!

Well all right. First question: what difference does it make now that the CDRPA has passed? W2W got what it wanted? Changes everything or changes nothing?

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Anatomy is not destiny.

To find out what difference passage of the CDRPA makes, it's helpful to read the text of the bill, available here .  In short, the 3 articles of the CDRPA provide for:

 

1. Coordination of research through the National Institute of Health
2. Support for a multicenter clinical trial network
3. Programs to improve quality of life for persons with paralysis and other physical disabilities.

Passage of the CDRPA sets up the structure; now we must get it funded.

 

Yes the efforts of those who attended Working 2 Walk in Washington made a big difference in getting the CDRPA passed.  But really that's just the beginning.  Three major developments in the last 6 months have changed the landscape for advocacy:

 

1. Passage of the CDRPA
2. President Obama's reversal of the ban on federal funding for embryonic stem cell research
3. Publication of CDRF' Paralysis Prevalence Survey

Armed with the power of these developments, we must devise a unified agenda going forward.  Determining that agenda will be a major focus of Working 2 Walk in Chicago this summer.