Every 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:
- Over 13 trips to Washington DC over the last several years to discuss the need for dedicated Cerebral Palsy research with Congressional leaders.
- Testified before the House Appropriations LHHS SubCommittee again in 2014, and met several times with key members of the Senate Appropriations Committee over the last six years.
- We leveraged our physician/parent partnership with the AACPDM to successfully secure language in the 2013 Appropriations budget for specific Cerebral Palsy research funding. We described the critical need for increased funding and focus on Cerebral Palsy from the NIH and increased funding and dedicated epidemiology and prevalence research for the CDC. The information on 2013 Cerebral Palsy research with the CDC and NIH can be found on pages 69 and 100 here.
- You can read our “U.S. Cerebral Palsy Federal Funding Fact Sheet” here and see TV news highlights of our trip here. It is one of our proudest moments of creating real change and real awareness for Cerebral Palsy research – an issue that has been basically “status quo” for over 50 years. We are grateful to all the parents and physicians who banded together to move the ball forward and to show lawmakers that we really do care about this issue and will not give up.
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.