Launched in late 2005 by two mothers in Atlanta, Georgia, “Reaching for the Stars. A Foundation of Hope for Children with Cerebral Palsy” (RFTS, Inc.) has grown into the largest pediatric Cerebral Palsy nonprofit foundation in the world led by parents, with a focus on the Prevention, Treatment and Cure of Cerebral Palsy. We are committed to serving the needs of children with Cerebral Palsy, their families, and the care givers involved in their care. You can read more about our story here in a feature on the Centers for Disease Control and Prevention website about Cerebral Palsy.
The RFTS mission is centered on the belief that leading-edge pediatric research, increased awareness and education will lead to new treatments of Cerebral Palsy, improving the lives of impacted children and their families. Research for CP, particularly in children, is under-supported and severely under-funded… slowing progress towards better understanding what causes Cerebral Palsy, how to best treat it and how to eventually cure it.
Consider these facts:
- Despite being the most common motor disability in children affecting over 17,000,000 people worldwide, the awareness of Cerebral Palsy remains very low.
- The prevalence of Cerebral Palsy is not decreasing in the U.S. – despite advances in neonatal and obstetrical care. It is estimated that 1 in 323 children, and over 800,000 Americans are impacted by Cerebral Palsy.
- There has been no dedicated U.S. line item funding for Cerebral Palsy research, even though Cerebral Palsy has 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) You can read more about this issue here.
“Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it’s the only thing that ever has.” —Margaret Mead
In just a few short years, “Reaching for the Stars” has made huge strides to increase Cerebral Palsy awareness and research progress.
Here are a few of our specific accomplishments:
- Establishment of March 25th as Cerebral Palsy Awareness Day in the United States, via bi-partisan Congressional designation
- Testified before the 2014 Congressional House Appropriations LHHS Subcommittee about the need for Cerebral Palsy Research Funding. You can read our testimony here.
- Official external partners of the Centers of Disease Control and Prevention (CDC) and the American Academy of Cerebral Palsy and Developmental Medicine (AACPDM)
- Through federal advocacy efforts, secured Congressional appropriations language committing to line item federal funding of Cerebral Palsy research in the 2013 budget. This is the first time specific funding language of this kind for Cerebral Palsy funding has occurred. Click here to learn more.
- Clinical trial recruitment for major Cerebral Palsy clinical trials around the U.S.
- Direct funding and partnership of cerebral palsy research initiatives for stem cells, advanced brain imaging, pharmaceuticals, robotics and medical devices.
- Establishment of effective partnerships with other cerebral palsy organizations around the world, government entities, disability groups, adaptive sports programs, medical institutions, researchers and scientists.
- Member of NeuroNext Network for Cerebral Palsy research collaboration.
- Honored with awards for increasing Cerebral Palsy awareness and research including the Cathleen Lyle Murray Award for humanitarian efforts on behalf of people with disabilities by the AACPDM.
- Built the largest Cerebral Palsy database of parents in North America and social media presence on www.twitter.com/reach4stars and Facebook
- Speaker at conferences in the U.S., Canada and Australia
- Member of AHRQ Cerebral Palsy Issue Exploration Forum. Read report here.
- NINDS Nonprofit Forum
- Read more about Michael Kutcher:
Read about RFTS Parent Physician Partnerships: Physical Medicine & Rehab Clinics of North America
Listen to a CDC/RFTS podcast about Cerebral Palsy
Read about our bi-partisan designation for National Cerebral Palsy Day
More children with Cerebral Palsy are being diagnosed every day despite advances in neonatal and obstetrical care. The prevalence of CP is 1 in 323 U.S. children, and over 17,000,000 people worldwide.