I never knew Ashton Kutcher had a twin brother, Michael, or that he had cerebral palsy. But now I do and I am wowed. Recently, Michael traveled to Washington, D.C., to push for more research funding for preventing CP. Michael has a mild form that affects his right side, hearing and vision. He's befriended an awesome little girl, Bella, who has more involved CP; she was there with him.
Some 764,000 kids and adults have cerebral palsy and nearly 8000 babies and infants are diagnosed with it every year, according to Reaching For The Stars (RFTS), a nonprofit that advocates for more CP research. It is the most common motor disability in children. And yet, there is no dedicated funding at the National Institutes of Health or the U.S. Centers for Disease Control for cerebral palsy research.
This was Michael's second trip to Washington as Executive Director for RFTS. Curious, I looked him up on LinkedIn because I like to hear what adults with CP do for a living—it inspires me. Michael works as an assistant manager a company that handles retirement services in Cedar Rapids, Iowa.
"I have to be the voice for a child that literally can't speak," Michael says.
A-men. It's great to have someone with smarts, heart and celeb cache (always a plus) advocating for kids. Cheryl Hines, who has a nephew with CP, is an ambassador for United Cerebral Palsy and on the organization's national board of trustees; she actively fundraises for them. Eva Longoria has a sister with an intellectual disability, and has lobbied Congress to prevent service cuts for those with ID.
"Keep moving the rock on CP on cap hill today brother! Love u much" Ashton tweeted to his brother the day he went to D.C.
"Thanks brother, crushed the rock today !!! much love" Michael tweeted back.
And now, I have a crush on both brothers (and Dave will have to deal.)
Here's how you can easily email lawmakers to support federal funding for cerebral palsy research; the goal is 100,000 emails by the end of May.
This is great! As a mother of a child with CP, I'm thrilled whenever I see others working tirelessly for his benefit. Thanks for sharing this. I love reading your blog every single day! Keep it up!!
ReplyDeleteThis is a thousand shades of awesome!
ReplyDeleteWhat a great story! I am not happy there is no specific research for this :-(
ReplyDeletethanks for the important story! i'm going to share the link to the advocacy website all over.
ReplyDeleteI sit on the Board of Directors of the Reaching For the Stars Foundation with Michael and I can tell you his passion, and the passion of all of us at RFTS is real, focused and making a difference.
ReplyDeleteIt has taken seven years to get to where we are today and thanks to the testimony on Capitol Hill last week, we are very close to securing vital federal funding for CP research. Please go to the RFTS site and use the links to contact your elected officials today.
Thanks so much!
John W. Quinn
Author, Someone Like Me - An Unlikely Story of Challenge and Triumph Over Cerebral Palsy
www.johnwquinn.com
Great story!
ReplyDeleteBut I really hate the end when they ask her if her dream is to walk. To me, she was walking. Quite well, actually, even though she needed a walker. If she said it was her dream, great! But if she didn't and the reporter put words in her mouth that isn't so great.
Often when people meet Emma or just hear about her their first question is will she walk. Quite frankly, that's not on the top of my list of things I'd like her to achieve. Finding a voice - verbal or augmentative - is really at the top of my list. Everything else is just icing on the cake!
I never knew that either! Wow!
ReplyDeleteWho is Ashton Kutcher?
ReplyDeleteWell, I'll be! I had no idea! I'm happy to read this and hope that the celebrity name will help in any way possible.
ReplyDeleteGo Michael!!
ReplyDeleteI am a teacher and volunteer Director at LA Community Outreach Center. It is a homeless shelter that has two children and nineteen adults in residence. This weekend, I was able to communicate and connect with a special needs child who was not verbal prior to our interaction. When we met, she colored pictures, and was smiling, after spending two hours with her, she looked at her family members square in the eye, pointed to me, and said teacher...What a moment.
ReplyDelete