Together We Can Make a Difference Cynthia Frisina Gray Anna Marie Champion

1. Together We Can Make a Difference Cynthia Frisina Gray Anna Marie Champion Co-Founders, RFTS Inc. Aug. 11, 2007 www.reachingforthestars.org

2. Who are we?….Moms on a mission • Two mothers of children with cerebral palsy • Anna Marie Champion • Cynthia Frisina Gray • Our daughters: Morgan Champion 2nd grade and Cathryn Gray -1st grade

3. Cathryn Gray: born 10.25.00; 29 weeks, 3lbs 10oz, slightly bigger than a hand

4. Morgan Champion: Born April 9, 2000: 28 weeks; 2 lbs, 3 oz; slightly bigger than her stuffed lion

5. Cathryn and Morgan were both diagnosed with CP at 11 months • Pediatricians told us both “not to worry” • We hadn’t met yet. • Neither of us knew if our children would walk or talk. What did Cathryn and Morgan’s future hold? • We were scared yet determined.

6. Not understanding CP, we started researching and “Googling”….. • We looked for answers • We searched for solutions • We searched for hope • There were none of the above to be found • We wanted to “fix this”

7. We looked for other parents like us • Looked for a national Parent CP organization but there wasn’t one • How could there be almost a million people with CP yet no national parent organization and no federally funded national CP research? This was not ok. • Enter… Dr. Janice Brunstrom and the orthopedic surgeon we had in common. • We met the summer of 2004. Little did we know we would be standing here today…but we knew we had to do something.

8. So the RFTS story began….. • Two mothers determined to make a difference in the lives children with CP. • United by a common purpose, we launched “Reaching For TheStars. A Foundation Of Hope For Children With Cerebral Palsy” to bridge the advocacy and research gap that currently exists. • Launched in late 2004, RFTS, Inc has become a national, parent-driven agent of hope, education and advocacy.

9. What is RFTS? • Only national, parent-led pediatric education and research foundation for children with cerebral palsy and their families • Over 800,000 Americans with CP. Many estimates even higher. • 501 3 (c) non profit • All volunteers • National in scope • All-star Medical & Community Advisory Board • Leading physicians, therapists and scientists • Growing, national email database of parents and caregivers. We need you!

10. Our Mission • To change the future of Cerebral Palsy • Research for CP, especially in children, is under-funded and under-supported – slowing progress towards new treatments, determining causes or a cure. We believe national surveillance and research can lead to new treatments of CP and deliver measurable improvements in the lives of impacted children and their families

11. More children with Cerebral Palsy are being diagnosed every day • CP affects at least 800,000 Americans • One of the most common developmental disabilities • The majority of time, the specific cause is unknown • In over 50 years, CP treatment has not progressed much • Little consensus among the medical community regarding what causes CP or how to treat it. • Families are frustrated and many are hopeless.

12. Cerebral Palsy is a complex disorder • The majority of those with CP suffer one or more additional developmental disabilities – epilepsy, autism, visual impairments etc. • High risk for secondary complications-muscle atrophy, contractures, bony deformities, nutritional issues, urinary problems, scoliosis and chronic pain. • Incidence of CP decreasing in other countries but believed to be increasing here despite better prenatal care and obstetrical advances. • Why?

13. Establishing the research need… • Cerebral Palsy is the only disorder affecting over 500,000 US citizens that receives no specific CDC line item federal funding for surveillance and research. • The CDC reports that the prevalence of CP in children is higher than childhood cancer, hearing and vision loss, spina bifida, fetal alcohol syndrome, cystic fibrosis, yet no national study of CP exists. • Autism is an example of effective, national parent-led change. It can be done.

14. Cerebral Palsy Funding in Comparison to other Disabilities/Conditions

15. Parents seeking a solution • Establish CP surveillance and research of a national scope – will spark additional scientific interest • Without knowing the cause(s) – little hope of a cure • Establish national CP research centers • Congressional 2008 request • $10MM recommendation, adding CP to existing CDC surveillance and research infrastructure

16. RFTS accomplishments in Washington DC… • Five trips to Washington in 18 months • Targeting House and Senate Appropriations subcommittee • Invited to testify before Congress • House LHHS subcommittee • Met with President Bush’s top cabinet official on disabilities – Dr. Margaret Giannini • Over 10,000 letters written by parents across the country in support • Written and verbal support from: UCP Foundation, The Child Neurology Society and The American Academy of Cerebral Palsy and Developmental Medicine • Senator Dick Durbin (IL) authored Senate “Sign-on” support letter; similar effort on the House side led by Congresswoman JoAnn Emerson (MO)

17. RFTS key initiatives… Vigorously advocating national CP surveillance and epidemiological research. We support: • CDC: selected RFTS as one of their designated “national partners” in 2007 • NIH and subsidiaries • National Children’s Study • “Best Pharmaceuticals For Children” Act • Invited to present at the AACPDM annual conference in Oct. 2008 in Vancouver • (American Academy of Cerebral Palsy & Developmental Medicine)

18. RFTS initiatives continued • Establishing RFTS Chapters around the country to bring parents together locally. Important to increase the number of involved and aware parents. • Parent educational conferences partnering with leading medical institutions: St. Louis, Chicago, Atlanta • Building educational research section of website for resources, the latest CP research news, updates and helpful links. • Focus on fundraising: critical to continue mission in Washington and on a local level; parent education; future promising research projects. Fundraising forms now available on the website

19. We can make a difference • Together… we can make life better for all of our children • We believe a cure for CP is possible • Scientific and medical interest is beginning to increase. • National lawmakers are beginning to listen and the CP paradigm will change. • Parents will make the difference by making their voices heard in unison.

20. Cathryn and Morgan today…look how far they’ve come!

21. Thank you! • Your time and attention means so much to the hundreds of thousands of children with CP who have so few to speak for them. • We invite you to join our email list at www.reachingforthestars.org and make a difference.

22. RFTS: 3000 Old Alabama Road, Alpharetta, Georgia, 30022 • Anna Marie Champion • email: achampion@reachingforthestars.org • Cynthia Gray • email: cgray@reachingforthestars.org • www.reachingforthestars.org