Advocacy

RFTSSenatorIsakson3.25.14Every one of us has a voice that matters. Thanks to the tireless efforts of caring parents and caregivers, “Reaching for the Stars” (RFTS, Inc.) continues to advocate for increased Cerebral Palsy research federal funding, focusing on causation, prevention and cure.

On National Cerebral Palsy Awareness Day, March 25th, 2014, “Reaching for the Stars” was invited to testify before a Congressional Subcommittee about the need for Cerebral Palsy Research Funding. You can read our testimony here.

In addition, our U.S. Cerebral Palsy Federal Funding for a Cure document can be read here, which is a jointly produced document with the AACPDM.

A lack of basic causation and basic epidemiology CP research means approximately 80% of CP cases still have an unknown cause. Without fully understanding the injury mechanism to the developing brain, it’s difficult to prevent, treat and eventually cure Cerebral Palsy.   We will no longer accept this as the status quo.

Important to note:    There has been no dedicated U.S. line item funding for Cerebral Palsy research, despite the fact it is the most common motor disability in childhood, affecting over 800,000 Americans, with higher prevalence than muscular dystrophy, Parkinson’s disease, childhood cancer, hearing loss, spina bifida, hemophilia, fetal alcohol syndrome, or cystic fibrosis.  Source: CDC,  National Institute of Neurological Disorders & Stroke (NINDS/NIH)

It’s critical that we, the “family sector”,  are leaders in the push to increase research funding and ensure that all promising research opportunities are pursued.  If families don’t speak up for their children, who will?  Without increased research focus on Cerebral Palsy, health care costs will continue escalate in the years ahead, while productivity decreases for both the children affected and the families caring for them.

Specific RFTS Advocacy Update 2014:

Please contact your U.S. Representative and Senators and urge them to support this essential issue. An e-mail of support from you can make the difference for the millions of children with Cerebral Palsy and their families.

> Find your elected government officials

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