Posted by: seserdr1975 | October 19, 2013

Being Involved

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 NINDSPatient 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 cpdailyliving@gmail.com 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 homepagewith international educational events.

8. Sign up for the US CP National Registry (or one in your country) You can read here what the registry is about and how it can help the CP community.

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/congress/members.

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 Foundationthe most robust and consistent funder of CP research

Pedal with Peteraising 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!

 


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Categories

%d bloggers like this: