It's National Cerebral Palsy Awareness Month!
New Year. New Website. New Research. New Hope.
Welcome to the newest edition of our RFTS eLert! During the last few years, we have had the privilege of meeting amazing families, clinicians -- and especially children -- with stories so inspiring and daily courage in the face of daunting odds. In honor of National Cerebral Palsy Awareness Month, we remind each of you that you can make a difference to change the future of Cerebral Palsy.
To keep up with the pace of technology and the needs of our families, we have totally revamped our website www.reachingforthestars.org in order to make it faster, more user friendly and more of a two-way communication system with YOU. You can now comment directly on the website regarding articles and posts. We'd love to hear what you have to say. We have a live Twitter stream on our site featuring relevant conversation, breaking research news and the latest CP information at www.twitter.com/reach4stars. Our resources and clinical trials sections have been expanded significantly, and our website content is now updated weekly with new features and news. Please take a moment to check it out and give us your thoughts.
We now know that 1 in 268 children have Cerebral Palsy, the most common childhood motor disability. Over 800,000 Americans are affected, along with millions of family members, caregivers and loved ones exacting a staggering human and financial toll. We are actively supporting advocacy, education and research looking for root causes, new treatments, and ultimately a cure for Cerebral Palsy.
The Centers for Disease Control and Prevention (CDC) reports the prevalence of Cerebral Palsy in children is higher than childhood cancer, hearing and vision loss, spina bifida, hemophilia, fetal alcohol syndrome, cystic fibrosis - and similar to the prevalence of Autism in 8-year-old children - yet no comparable national surveillance study of Cerebral Palsy exists.
Source: CDC 2008 Final Funding
|Disease / Condition
||# US Citizens Affects
||CDC Funding 2008
|West Nile/Vector Borne
||18,000 since 1999
|Fetal Alcohol Syndrome
||0.97 per 1000 births
|Chronic Fatigue Syndrome
|Diamond Black Fan Anemia
||1 in 200,000
Although there is unfortunately still no federal funding of national Cerebral Palsy epidemiology and surveillance research despite the inequity outlined by the chart above, we are continuing our work to change that with the help of new advocacy strategies and committed people like Michael Kutcher
, of Cedar Rapids, Iowa. We are thrilled to announce that Michael, who also has CP, has recently joined forces with RFTS both on a state and national level.
Still not sure one person can make a difference??? Take a look at www.crreachingforthestars.com
and what one mom decided to do all on her own. We've featured this mom, Kristi Trotter and her beautiful little girl, Isabella, in our brand new website feature - the RFTS Parent Spotlight
. Please take minute to read Kristi's inspirational story...and hopefully consider sharing yours in the coming months.
We are also in talks with researchers and scientists from around the U.S. and the globe regarding promising research topics ranging from autologous stem cell transplants in chronic and acute CP, to diffusion tensor imaging and neural plasticity advances. You can learn more by visiting www.reachingforthestars.org
. We look forward to updating you regarding these exciting developments. Our partnerships with the CDC, NIH and leading medical institutions continue to grow as we look for new educational opportunities and continue our efforts recruits for CP clinical trials across the country. You can find clinical trials on our website or www.clinicaltrials.gov
. We are helping to recruit for a new NIH CP study dealing with Leg Motor Coordination. Find out more here
Closer to home, we're excited to welcome several new RFTS chapters who also have brand new chapter websites, including Illinois, Ohio and New York - with many more on the horizon. See our new chapter page
for more information. If you live in one of these areas and are interested in getting involved or learning more, please contact these dynamic and talented RFTS chapter leaders.
Globally, we partnered with the AACPDM (www.aacpdm.org)
this year and received a grant from the Australian CP Institute to build and launch an international CP website portal focused on epidemiology, physician care, and advocacy effort called The One World CP Network
, launching in Fall, 2010.
Also, be sure to consider joining the www.cpregistry.org
- an important initiative to build a national CP registry that can be leveraged for clinical trials, research and much more. This wonderful project is led by the Rehabilitation Institute of Chicago, in conjunction with Northwestern University, the University of Chicago, La Rabida and Children's Memorial Hospital. Please visit the www.cpregistry.org
website to learn more!
Last but not least...RFTS has a toll free 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. You can also follow us/talk to us on Twitter at www.twitter.com/reach4stars for regular updates and more.
We'll be sending out some survey questions soon so we can better serve you and learn what you think about a variety of topics.
Have a safe and healthy Spring!