Asking for Help

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,

Cerebral Palsy affects 1 in 268 children, over 800,000 Americans and is the most common motor disability in children, yet there is no dedicated or line item funding of Cerebral Palsy causation, prevention or cure research at the NIH or CDC. We can no longer accept the status quo for Cerebral Palsy. Despite advances in genetics, obstetrics and neonatology, we STILL do not understand much more about the underlying causes or prevention of CP than we did half a century ago. The cost is devastating – both emotionally and financially, for families and for our healthcare and government system. In 80% of the cases of Cerebral Palsy the cause is unknown due to lack of research. Caleb is a sweet little boy who found out he has CP at 10 months old. It’s unclear what caused the brain injury that has left him with CP and it’s also unclear what the future holds for Caleb. With a dedicated federal funding commitment, we can make strides toward potentially finding a cure and best treatment, as well as prevention for Cerebral Palsy but also understanding the risk factors, the cause and which treatments might be most effective. On behalf of little Caleb and his family, thank you!

Sincerely, 

(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!

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I'm a working mom of three fantastic boys: Caleb, Wyatt and Parker. My husband, Shane, and I live in the Washington DC suburbs where we enjoy playgrounds, pools and never getting to sleep in. This blog is a journal of our day-to-day lives as well as a chronicle of Caleb's progress after a recent spinal surgery to alleviate the effects of his cerebral palsy.

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2 comments on “Asking for Help
  1. Kat says:

    I had NO idea about Ashton having a twin! Crazy. What a similar situation – and I’m so happy to see he’s full grown!

  2. Pat says:

    Done….anything to help. Pat Berman (Ian’s Mother)

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