Hand to Hold's Official Blog: Written by Parents for Parents

Operation Cerebral Palsy: Calling all Parents!

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We’re Advocating for This Guy! For who are you an advocate?

In honor of World Cerebral Palsy Day today, September 4, I am requesting a call to action for all parents of children with CP. I am urging all of you to get on the advocacy bandwagon. I know we are all tired, worn out, and lack time and energy, but this is too important to ignore. Of course, we are all advocates for our individual children each day in a variety of ways, but I am talking about a collective advocacy to make change.

In a nutshell, CP research has very little funding. There is no line item funding guaranteeing money for cerebral palsy research at the NIH. Last year the private funds raised for CP research by US cerebral palsy organizations amounted to less than a measly two million dollars. I have been following a fellow parent and her blog entitled: CP Daily Living. She is working hard to “mobilize the troops,” so to speak. She has been collecting data, talking with private organizations, and starting a conversation for parents and researchers about these issues, on her blog. Below are excerpts from the CP Daily Living blog, written by Michele Shusterman (reprinted with permission). Each point is a small piece of the entire article, so I encourage you to follow the links for more detailed information. At the bottom are ways you can get involved. Michele is doing the work, let’s help her see this through. Please take a stand now and do something to move this forward!

The Need

  • Cerebral palsy impacts the lives of more than 17 million people worldwide and is the most common motor disability in children. One in 303 children are estimated to have CP in the U.S. There are approximately 800,000+ people who have CP in the U.S.
  • The CDC has estimated lifetime cost to care for an individual with CP is nearly $1 million. It also has been estimated by the CDC that the combined lifetime costs for all people with CP born in 2000 will total $13.5 billion in direct and indirect costs. Link to entire blog post.
  • Despite advances in prenatal, delivery, and post-delivery care, the percentage of babies who develop the condition has remained the same over the past 30 years. As survival rates for very low birth weight baby’s increase, the risks for cerebral palsy also increase but continue to remain misunderstood because of lack of available research monies. Link to entire blog post.
  • We have no line item funding number that guarantees public monies will be directed toward CP research from the NIH or CDC. Link to entire blog post.
  • Private cerebral palsy funding in the US amounted to only 2 million dollars last year. This total is from all of our US CP organizations (Cerebral Palsy International Research Foundation, Reaching for the Stars, Pedaling with Pete, Let’s Cure CP). What can we do with 2 million dollars in private funds? Not much. Pilot study grants are typically 50-60,000 per year for two years, and clinical trials cost over a million dollars. The CP community has very little in private and public funds to make much headway.

Get Involved

  1. Follow the blog CP Daily Living. In addition to posts about current topics related to CP, there is a calendar of events page with information about fundraisers, meetings and international educational webinars. The advocacy section will post various opportunities to get involved as they arise.
  2. Sign this petition, which is to have the organization UCP change their name. UCP does not exclusively support individuals with CP, but a variety of disabilities (which has been the case for quite some time). They do not fund any research for CP. More info on why this is important.
  3. Contact your Senators and tell them your story to start the process of generating awareness and support for cerebral palsy. Find your Senators. Here is your Phone Dialogue Guide if you wish to call your Senator’s office. If your Senator has a Washington DC office be sure to call that number first.
  4. Encourage support for “The Able Act”: This legislation introduced in 2012 would allow for families to establish special needs tax-free spending accounts that as proposed are designed to protect your child’s access to many government benefits.

Other Posts of Interest

Cerebral Palsy Awareness Day
CP Advocacy Efforts- Petering Out?
Cerebral Palsy- Umbrella Term

Stephanie Goley About Stephanie Goley

Stephanie Goley (MA) is the mother of three, full-time stay-at-home mom, part-time educator and military spouse. Her oldest child, Kai (6) was born full-term, but experienced birth trauma causing significant brain damage. He spent 17 days in the NICU and is diagnosed with cerebral palsy, dystonia, cortical visual impairment and seizure disorder. He is non-verbal and non-ambulatory, relying on others for all his basic needs. Stephanie is interested in fitness and having fun adventures with her family. She is passionate about creating the best life possible for her son and seeking out alternative therapies to help develop his potential. You can find her on Facebook and her personal blog about Kai, written from his perspective.

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