It’s World CP Day! This is the 2nd annual international awareness and advocacy day for people with cerebral palsy. In honor of this day I have prepared a list of facts about cerebral palsy as well as twelve advocacy ideas for each month of the year that can help keep the momentum going.
Twelve things to know about cerebral palsy:
1. Cerebral palsy is a movement disorder caused by early injury to the part of the brain responsible for motor control/coordination. The signals sent from the brain to the individual’s muscles are not regulated properly, leading to a lack of control over movement. Over time the lack of muscle control can lead to secondary musculoskeletal problems.
2. 17 million people worldwide are estimated to have cerebral palsy.
3. Although everyone with cerebral palsy has problems with motor control, they experience the coordination, balance, and/or postural issues in different ways and often face very different challenges.
4. Cerebral palsy is not contagious.
5. Many people with cerebral palsy may have a secondary diagnosis or related complication/s including epilepsy, blindness, hearing loss or deafness, speech/communication issues, sleep issues, learning challenges, intellectual disability, difficulty with bowel and/or bladder control, eating and drinking issues, spinal and hip abnormalities.
6. Current treatments/interventions for CP offer only about a 4-10% gain or improvement. -source, Dr. Iona Novak, CP Alliance Aus
7. Despite being the most common childhood motor disability, cerebral palsy has no dedicated US federal funding, and our private US based CP organizations have annual donations totaling less than 2 million dollars (that is the collective total!).
8. Many people incorrectly assume that cerebral palsy is a pediatric disorder. This is completely incorrect. In fact, there are more adults with CP than children.
9. Cerebral palsy has been a known condition for centuries, yet in the majority of cases specific causation is still unclear. In addition scientists still don’t know why certain conditions lead to the development of cerebral palsy in some children but not others. For instance, prematurity is one of the most common associations in the development of cerebral palsy but we still don’t know why some premature babies develop CP and others do not.
10. 3 out of 4 people with cerebral palsy (both children and adults) are in pain and some are not able to communicate to describe their pain. -source Dr. Iona Novak, CP Alliance
11. Although CP is considered to be a non-progressive disorder, over time symptoms can worsen.
12. People with cerebral palsy have diverse talents and interests: They are artists, comedians, members of the military, attorneys, teachers, psychologists, leading physicians, musicians, actors, models, athletes, fitness instructors, entrepreneurs, scientists, and the list goes on!
Twelve things you can do to support the CP community:
Every day is an opportunity for CP awareness! Here you will find a list of suggestions to help support people with cerebral palsy each month of the year. There are plenty more, but these can get you started and get ideas flowing:
1. Know which organizations are doing what for the CP community. For instance many people choose to give funds to United Cerebral Palsy assuming the money is somehow making its way to CP research. This isn’t the case. Although the name may lead you to believe otherwise, United Cerebral Palsy’s mission is focused on the supporting the greater disability community. Their work is important, but United Cerebral Palsy’s national mission does not focus on addressing the widespread and unmet medical and specific advocacy needs of the cerebral palsy community.
See the UCP name change petition for more details and sign it while you are there:
2. Participate in the NINDS Patient Advisory Core– This is a unique opportunity for individuals with CP and their advocates to share their voice with researchers. This is a newly forming advisory group at the Institute of NIH focused on funding brain research. They are looking for committed patients/advocates willing to interact with investigators who have expressed interest in engaging patients in the development of their research ideas and protocols but don’t necessarily know where to begin. Please contact me at firstname.lastname@example.org for further information about applying/signing up. International participation is welcome.
3. Propose an idea for World CP Day and/or review and vote on existing ideas:
4. Stay connected to community-wide news on CP Daily Living’s facebook page:
5. Inquire about participating in a clinical trial. You can start by looking here: www.clinicaltrials.gov. You may also ask your local research hospitals and doctors about local trials you or your child may qualify for. Having access to patients in order to complete clinical trials is a huge problem for scientists and one that we CAN help them with.
6. Reach out to equipment developers and offer ideas and feedback to them specific to your needs and perhaps the broader CP community. I have done this and most of them are deeply interested in having constructive and practical insight from equipment users and caregivers.
7. Remain educated about CP by participating in educational conferences and telecasts sponsored by our CP non-profits and research centers. Many members of our community remain disconnected from current information about cerebral palsy and ongoing cerebral palsy research. There is a calendar on the CP Daily Living homepage with international educational events.
9. Create awareness about cerebral palsy by sharing your personal story locally and/or with a member of Congress. Your voice and vote matter! If you meet with a politician tell them why supporting NIH (federal funding for research) funding and cerebral palsy research is important to you. I have scripts and some guidance on the website if you are interested in meeting with your local members of Congress. Here is a handy tool for finding your local representatives so that you can stay active in sharing your voice: http://www.house.gov/representatives/find/. Here is another resource for finding your state Senators: http://www.govtrack.us/
10. Use social media to share facts about cerebral palsy and guide people to our CP organizations.
11. Financially support one of our US CP non-profits. Although there are many things you can do which don’t require money, improving the financial support of our CP non-profits will ultimately be the key factor leading to more research and support services for our community.
Cerebral Palsy International Research Foundation–the most robust and consistent funder of CP research
Pedal with Pete–raising money for research through bike rides and walks
Let’s Cure CP– new parent founded organization focused on fundraising for regenerative medicine research
Reaching for the Stars– pediatric organization that has been working on opening up federal funding sources for CP but has also helped to fund a few CP research studies.
12. Share this list with someone you know!