Welcome to Reaching For The Stars
If you're a parent, caregiver, relative
or friend of a child with Cerebral Palsy
Please Read And Spread The Word...
Save The Date: AACPDM & RFTS Co-Sponsor Family Forum Workshop Friday, September 19th, 1:00-5:15pm, Hyatt Regency Atlanta.
This is an exciting opportunity to hear and interact with some of the world's leading physicians, scientists and researchers who specialize in cerebral palsy at the American Academy for Cerebral Palsy & Developmental Medicine (AACPDM) & "Reaching For The Stars" co-sponsored Family Forum on Friday, September 19th at the Hyatt Regency Atlanta from 1:00-5:15pm. The Family Forum Workshop is FREE with registration from the RFTS website -- click here to register. This will be a wonderful event you won't want to miss if you are interested in the newest cerebral palsy information. Please click here to see the entire agenda.
An outstanding group of speakers will include: Dr. Hank Chambers, orthopedic surgeon (San Diego); Dr. Janice Brunstrom, neurologist (St. Louis); Dr. Leland Albright, neurosurgeon (Wisconsion);
Dr. H. Herr Graham, orthopedic surgeon (Australia);
Dr. Martin Gough, orthopedic surgeon (UK); Dr. Michael Johnston, neurologist, Johns Hopkins; and Dr. Joanne Kurtzberg, Duke (cord blood stem cell transplants).
Miss Iowa USA, Abbey Curran, will also speak about growing up with CP, as well as RFTS leadership sharing new and important information with families. Please email us at info@reachingforthestars.org if you need more information. Hope to see you there!!!
We also want to bring you an exciting opportunity regarding adults with Cerebral Palsy brought to you by the Cerebral Palsy International Research Foundation (formerly the United Cerebral Palsy Research & Education Foundation), the AACPDM and RFTS, Inc. This exciting two-day workshop is called: Adults with Cerebral Palsy: A Workshop to Define the Challenges of Treating and Preventing the Secondary Musculoskeletal and Neuromuscular Complications in this Rapidly Growing Population. Held September 16 & 17, 2008 ~ Hyatt Regency Downtown Atlanta, GA
The workshop will bring together leading scientists, physicians, healthcare professionals, families and individuals living with cerebral palsy to review current knowledge and develop a blueprint for future research and collaboration in the area of aging and rehabilitation in cerebral palsy. The workshop will begin at 7:45 AM and adjourn for the day at 7:00 PM on Tuesday, September 16th . We will conclude with a one hour session, Wednesday morning, the 17th at 7:30 AM. Please click here for the registration form and for more information.
RFTS is pleased to be able to help bring you these outstanding workshops and forums while the AACPDM annual conference is in Atlanta. We hope you will be able take advantage of these two opportunities and meet us there!
RFTS is excited to announce a generous donation to Dr. Michael Johnston and Dr. Alec Hoon of Johns Hopkins University School of Medicine to expand their ground-breaking neural plasticity research in children with Cerebral Palsy.
Dr. Johnston is the Chief Medical Officer and Senior Vice President Kennedy Krieger Institute, as well as Professor of Neurology, Pediatrics and Physical Medicine and Rehabilitation at Johns Hopkins. Dr. Hoon, MD, MPH is the Director for the Phelps Center for Cerebral Palsy and Neurodevelopmental Medicine at Kennedy Krieger Institute. He is also a research scientist at Kennedy Krieger Institute and is also an Associate Professor of Pediatrics at the Johns Hopkins University School of Medicine.
Thanks to your generous donations over the last year, we are able to begin to fulfill one of our dreams of helping to fund some of the promising pediatric cerebral palsy research. We have a long way to go, and with your help, this will be only the beginning of successful research collaborations that will help us unlock the causes and hopefully a cure for CP.
Please click here to read more about Dr. Johnston and Dr. Hoon's research which centers on advanced MRI brain imaging techniques (diffusion tensor imaging) in children with cerebral palsy and possible changes in function and imaging related to activity-based therapies.
RFTS in the News
“Reaching For The Stars” recently issued a press release about the recent CDC CP prevalence numbers published in the March issue of Pediatrics Magazine. Please click here to view the press release and related documents.
Senator Arlen Specter and Senator Bob Casey Support “National CP Awareness Day”
We are pleased to announce that Pennsylvania Senators Arlen Specter and Bob Casey made a wonderful floor statement about CP and are supporting a National CP Awareness Day thanks to the efforts of many RFTS parents and supporters. It's a very strong statement of support since there has never been a National CP Awareness Day and will be a huge stepping stone to future support. Please take a minute to click on the link below and read the resolution and the Senators’ floor statement. Also, please take a minute to email your thanks to both Senators. It will take a very brief amount of time but pay big dividends for children with CP. You can find their contact information here and here.
SENATE RESOLUTION 484--DESIGNATING MARCH 25, 2008, AS "NATIONAL CEREBRAL PALSY AWARENESS DAY"
RFTS Research News
RFTS is embarking on exciting new pediatric CP research projects with leading medical professionals and scientists 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) on two research grants to help children with cerebral palsy. We are also in the initial stages of collaborating with Dr. Michael Johnston (Kennedy Kreiger Institute, Johns Hopkins) on broadening the exciting neural plasticity research he is conducting with Dr. Alec Hoon. Please click here to view an abstract of this research.
We are partnering with Dr. Damiano and Dr. Brunstrom on the NIDRR 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, 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.
Many of the investigators leading these research grants and clinical trials have supported our RFTS efforts, goals and objectives since our launch. We are gratified to have parents, physicians and scientists working together to advance science and make a significant difference in the medical outlook for our children. RFTS will be closely involved in finalizing the data elements and forms to be used in several of these projects, serving as a liaison with other families, and encouraging family participation on a national level in these efforts.
Please refer to the Resources section of our website where you will find information about pediatric cerebral palsy clinical trials around the country, as well as resources you can turn to for more information both nationally and in your area.
Washington DC Update
We continue to make significant progress with Congressional support of national CP research and surveillance through the CDC. We are especially appreciative of Senators Dick Durbin's (IL) efforts on behalf of children with Cerebral Palsy and to all of the hundreds of Illinois parents who voiced their concerns to him. Please CLICK HERE to read Senator Durbin's "sign-on" letter and see the other U.S. Senators who also signed on to support our efforts.
Please let your elected officials know national CP research is important. There is increasing competition for a shrinking pool of federal medical research money. The more letters, emails, faxes sent by parents to their lawmakers, 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 CP 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.
A Foundation Of Hope For Children With Cerebral Palsy (RFTS, Inc.).
Launched in 2004, RFTS, Inc. a tax-exempt, national non profit organization, is committed to advocacy, education and driving research to serve the needs of children with Cerebral Palsy and those parents and care givers involved in their care.
RFTS, Inc. is a world-class advocacy and research foundation started by and for the parents of children with Cerebral Palsy centered on the belief that leading-edge pediatric research can lead to new treatments of CP and deliver measurable improvements in the lives of impacted children and their families. Research for CP, particularly in children, is under-supported and severely under-funded...slowing progress towards new regenerative neurological discoveries and limiting the awareness of CP in children. We need your help to create change.
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
RFTS, Inc. is in the process of raising funds to help the over 800,000 Americans impacted by Cerebral Palsy. Through patient advocacy, awareness building and fund raising we plan to increase the level of research and patient education with the goal of minimizing the debilitating impact of Cerebral Palsy in our children's lives.
More children with Cerebral Palsy are being diagnosed every day. For all the children with CP - and all those who will be - the time to act is now.
Your tax deductible contribution will fund advocacy efforts supporting research that will help find a cure.
Please Click Here to find out how you can help make a difference in the lives of these children.
Our site will be expanding and updating on a regular basis as new research, medical advances and advocacy in-roads are made. Please come back soon for additional updates and to find out what is new.
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