Thursday, March 19, 2009
CP Awareness Day at the CDC (US)
Don’t miss Friday, March 20th – CP Awareness Day at the CDC!!
RFTS and the CDC are co-sponsoring CP Awareness Day at the CDC from 10am-1pm on Friday, March 20th. There is no charge to attend but you do need to register here. We are incredibly excited to bring you inspiring special guests, Dick and Rick Hoyt (Team Hoyt) who will share their amazing story of hope and courage, as well as Dr. Janice Brunstrom, Director of the Cerebral Palsy Center, St. Louis Children’s Hospital. There will also be a wonderful interactive kids panel and much more. Don’t miss this very special day. Please click here for more details and to register.
Exciting Developments in 2009!
2009 is going to be a year of progress for children with Cerebral Palsy on several fronts. We are very excited to announce the launch of the RFTS “CP Kids Coalition” - a wonderful new program that will bring together school age children with CP all over the U.S. and abroad for both friendship and “input” into policy. More details will be forthcoming soon. We are looking for at least 100 children from across the U.S. who would be interested and willing to participate by being willing to write a letter or two, interest in sharing your story and what you like to do for fun, learning about other children with CP ...and possibly making a trip to Washington DC in the spring or summer. This is a great opportunity to make a difference and have your voice heard!
If you or your child are interested in learning more, please send us an email and include the subject line: “CP Kids Coalition” ...or you can always give us a call at our new 800 number below.
Mark Your Calendars for the RFTS/Washington University School of Medicine 6th Annual Parent Conference in St. Louis March 27th & 28. Click here for more details and to register. New topics and new speakers including education issues/IEP’s, inspirational stories and much more!
March is National CP Awareness Month! Stay tuned for a variety of activities that will be happening around the U.S. to increase awareness of Cerebral Palsy. March 20th will be our co-sponsored CP Awareness Day with the Centers of Disease Control in Atlanta, Georgia. Registration information will be forwarded to you soon.
RFTS is thrilled to announce that we are partnering with Dr. Jan Brunstrom-Hernandez and a team of leading investigators from around the United States as part of the national clinical trial - "Baclofen Efficacy and Safety Trial – Pediatric Pharmacokinetic and Pharmacodynamic Study of Oral Baclofen for the Treatment of Spasticity Associated with Cerebral Palsy". For additional information on this study and a list of participating sites please refer to the resource section of our website or click Here.
RFTS is heading "Down Under"! RFTS is joining the CDC and the AACPDM in co-presenting a workshop on Global Cerebral Palsy Trends, Research & Advocacy at the International Cerebral Palsy Conference in Sydney, Australia As we work to develop a more global perspective and raise the awareness of pediatric Cerebral Palsy on a worldwide basis, we will keep you posted and would love your involvement.
RFTS has a new phone number! Call 877-561-RFTS toll free from anywhere in the country to get information, get involved, offer a suggestion or ask a question.
AACPDM/Family Forum Update
RFTS would like to give a big thank you to all the families and medical professionals who attended the AACPDM/RFTS Family Forum on Friday, September 19th at the Hyatt Regency Atlanta. It was an incredibly inspiring afternoon with a wonderful line-up of excellent speakers from around the world explaining to families the newest CP research and medical procedures by Dr. Michael Johnston (neurologist, Johns Hopkins) and Dr. Leland Albright (neurosurgeon, Wisconsin), including the latest information on cord blood stem cell transplants by Dr. Joanne Kurtzberg (pediatric hematologist, Duke). Dr. Kerr Graham (orthopedic surgeon, Australia) and Dr. Martin Gough (orthopedic surgeon, UK) made a special guest appearance to debate the pros and cons of Botox usage. Additionally, Dr. Hank Chambers (San Diego) gave an honest account of what it's like to be both an orthopedic surgeon and a parent of child with CP. Dr. Janice Brunstrom (neurologist, St. Louis) and Abbey Curran, Miss Iowa USA inspired and moved us with what living with CP is really like.
The CDC also presented RFTS with a framed copy in recognition of RFTS efforts urging Senator Arlen Specter and Senator Robert Casey to establish Senate resolution 484 establishing March 25th, 2008 as National Cerebral Palsy Awareness Day. Read the text of the resolution here.
We'd like to give special thanks to all of our esteemed Family Forum speakers, and especially Dr. Hank Chambers (orthopedic surgeon and new president of the AACPDM) and Dr. Jilda-Vargas Adams (Cincinnati) for allowing RFTS to co-sponsor the Family Forum and helping to make it such a wonderful event.
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.
RFTS Research News
RFTS is embarking on exciting new pediatric CP research projects with leading medical professionals and scientists around the country.
We are pleases to announce that we are partnering with Dr. Jan Brunstrom-Hernandez, Washington University School of Medicine, and a team of leading investigators from around the United States as part of the "Baclofen Efficacy and Safety Trial – Pediatric Pharmacokinetic and Pharmacodynamic Study of Oral Baclofen for the Treatment of Spasticity Associated with Cerebral Palsy". For additional information on this study and a list of participating sites please Click Here or refer to the resource section of our website.
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 national research 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.
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.
Facebook, 19th March 2009