Welcome to the Fall 2007 edition of the RFTS Action Alert. We have many exciting new developments to tell you about! Thank you so much for all of your support and involvement over the last several months. Because of you, we are making a significant impact in the lives and futures of all of our children. Please visit www.reachingforthestars.org for all new information about cerebral palsy research and resources. We are also looking for volunteers in all areas from chapter organizing, fundraising, publicity, education and accounting. Please email us at firstname.lastname@example.org if you would like to get involved and make a difference.
RFTS 2007 Summer Conference Update
Thanks to so many of you for making the journey to St. Louis and Chicago in August for our co-sponsored parent conferences. We were thrilled with the great turnout at both conferences!! It was exciting to have parents becoming more informed and learning about new research and treatments that can help their children.
RFTS co-sponsored the 4th annual cerebral palsy parent conference "Building The Road To Independence" in conjunction with Washington University School of Medicine and Dr. Janice Brunstrom, the Director of the Cerebral Palsy Center for St. Louis Children's Hospital. Parents from all over the country convened in St. Louis in August to hear about some of the newest pediatric CP research, brain imaging studies and learn about promising new treatment protocols. We were inspired by a variety of medical and scientific leaders in the pediatric CP field, as well as by amazing children and adults with CP who shared their wisdom with the parents in attendance.
On Saturday, August 11th, we held our first-ever Chicagoland parent conference in conjunction with the Rehabilitation Institute of Chicago’s LIFE Center, and Medical Advisory Board member Dr. Deborah Gaebler-Spira. Almost 80 parents from the greater Chicago area attended the event to hear presentations from leading pediatric CP specialists, including RFTS Medical Advisory Board Members Dr. Janice Brunstrom and Dr. Gaebler-Spira. Parents also had the opportunity for Q & A with the experts, and the chance to briefly network with each other. Please CLICK HERE if you would like to view several of the presentations.
RFTS Research News
In accordance with our mission, RFTS is embarking on several exciting pediatric CP research projects in conjunction with leading medical professionals around the country. We have recently partnered with Dr. Diane Damiano (Washington University School of Medicine), Dr. Janice Brunstrom (Washington University School of Medicine) and Dr. Richard Stevenson (University of Virginia, Kluge Research & Rehabilitation Center).
We are partnering with Dr. Damiano and Dr. Brunstrom on the NIDRR grant proposal entitled "Effects of Motor-Assisted Cycling in Cerebral Palsy" focusing on children who have cerebral palsy in an effort to improve their level of motor functioning and conditioning. Results from this novel program will be analyzed and then shared with the families who are searching for ways to help their child become more capable and independent as they grow and mature.
We are also partnering with Dr. Damiano and Dr. Stevenson on a NIH research grant entitled the "Cerebral Palsy Collaborative Project". This will be the first large scale effort to examine the effectiveness of care that these children receive and it is very consistent with RFTS’s mission to improve the lives of children with cerebral palsy through research.
In addition, we have been invited to collaborate in the national Baclofen trial as part of the "Best Pharmaceuticals For Children Act". This exciting trial, headed up by Dr. Brunstrom as lead investigator with several of the RFTS medical advisory board members heading up test sites across the country, will lead to effective protocols for the use and dosing of Baclofen in children with cerebral palsy, and will also result in a deeper understanding of how children with more severe forms of cerebral palsy present clinically and are treated medically.
Please check out our new “Resources” section of the RFTS website to access a variety of helpful links including news about clinical trials, as well as national and local resources. We welcome your feedback on how we can make this section even better so please email us at email@example.com with your suggestions.
You Can Now Donate To RFTS Online….
Over 800,000 Americans have cerebral palsy. Hundreds of thousands of them are children. With your generous support, the root causes and potential new treatments cures for cerebral palsy can be identified. Are you ready to make a difference? We’ve made it easier than ever. You can now donate to RFTS online. CLICK HERE NOW.
Washington DC Update
Thanks to all of your letters, phone calls and faxes to key lawmakers we have made significant progress with the U.S. Senate support of national CP research and surveillance through the CDC. Please CLICK HERE to read Senator Dick Durbin’s (IL) "sign-on" letter and see the other U.S. Senators who also signed on to support our efforts. We are now in the final stages of this effort on the House side as well.
Please continue to let your elected officials know national CP research is important. The more letters, emails, faxes that are received this month, the better the chance that national CP surveillance and research will become a reality. Your voices are making a very big difference.
Please feel free to use the main points in our DC Fact Sheet in your emails and letters. Please speak up. It will only take a minute or two but will make a world of difference for the hundreds of thousands of children with Cerebral Palsy.
The AACPDM (American Academy Of Cerebral Palsy and Developmental Medicine)
RFTS has been invited to present a scientific poster at the 2007 AACPDM annual conference this October in Vancouver, British Columbia in conjunction with the CalNeuro Alliance. The American Academy for Cerebral Palsy and Developmental Medicine is a multidisciplinary scientific society devoted to the study of cerebral palsy and other childhood onset disabilities, to promoting professional education for the treatment and management of these conditions, and to improving the quality of life for people with these disabilities. Please visit the AACPM website listed above for more information. We look forward to sharing what we’ve learned with you when we return.
Anna Marie Champion and Cynthia Frisina Gray