As you know by now, I’m having a hard time accepting that we’ll probably never know what caused the injury to Caleb’s brain that left him with cerebral palsy or when it happened. We’re still continuing with weekly physical therapy, but I just wish there was more we could be doing. When it comes to the people you love, you just want to do everything in your power to help them and it never seems like enough.
During my research, I came across the website for Reaching for the Stars (RFTS), a non-profit organization that’s led by parents of children with cerebral palsy. I’ve learned a number of things from their website and encourage anyone to check it out if they’d like more information on pediatric cerebral palsy.
On a side note, did you know that the spokesperson for RFTS is Michael Kutcher. He’s Ashton Kutcher’s twin brother. I didn’t even know Ashton Kutcher had a twin brother and was even more surprised to find out that his brother has cerebral palsy, while Ashton is obviously unaffected. Kind of sounds like another pair of twins I know 😉
Anyways, one of the main goals of RFTS is to push for federal funding for CP research. Remarkably, even though there are 800,000 Americans affected and CP is the most common motor disability in children – there is no dedicated or line item funding of Cerebral Palsy causation, prevention or cure research at the National Institutes of Health or Centers for Disease Control. They’re encouraging people who’ve been affected by CP, in one way or another, to write to Senator Harkin (R-Iowa) to ask for funding for research. He is the Chair of the Appropriations Subcommittee on Health and Human Services, therefore, it’s important that he gets this message. The goal is to have 100,000 emails sent by the end of May.
I wanted to encourage any one who reads this take a few seconds to join me in emailing Senator Harkin on Caleb’s behalf. Here’s how you do it:
1. Visit Sen Harkin’s website in order to email him.
2. Use the subject line “Please Fund Cerebral Palsy Research Now”
3. In the “Please write your message” section, cut and paste the following (be sure to sign your name at the bottom):
To the Honorable Senator Harkin,
(Your Name Here)
4. Go the extra mile and copy/paste these instructions (1-5) and SEND THIS EMAIL TO YOUR FRIENDS AND FAMILY! Encourage them to forward to their contacts!
5. Feel good about making a difference for Caleb and countless other people!
If you’d like to help even more, then consider a quick call to Senator Harkin’s office. When speaking to an aide just simply introduce yourself and state, “Hello. I’m calling to urge Senator Harkin to fund research for Cerebral Palsy.” Maybe even mention that in 80% of the cases of Cerebral Palsy the cause is unknown due to lack of research.
You can reach Senator Harkin in DC at202-224-3254.
Thanks ahead of time for your support. We’re actually off to Iowa in the morning to visit my bestie Cassie and her beautiful family. I can’t wait!