My Guest Radio Show Host Gig for Kelly’s Choice

Cerebral Palsy Awareness Month was busy for me! I did two radio shows, my article got published by The Mighty, I participated in a video project (click on the link to watch) featuring five adults with cerebral palsy and my Facebook page, What CP Looks Like, reached thousands of people! Thank you to everyone who submitted pictures and greatest gift videos to my page.

The month ended on a high note. I was the guest host — first time doing this — and a guest on Kelly’s Choice Radio Show (click on the link to listen) on March 31, 2017.  Back by popular demand, me and my friend, Matt Rich, talked about a lot of topics during the show: why cerebral palsy awareness matters, the media blackout, how people can get involved & advocate on social media and more!

Celebrating Cerebral Palsy Awareness Month 2017

I’m excited to announce that What Cerebral Palsy Looks Like and my friends at CP DreamTeam are working together to promote Cerebral Palsy Awareness Month 2017 and National CP Awareness Day on March 25.

Watch the pinned post here to find out how you or your child can be featured on our Facebook pages in March.

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Learn more CP and please share these 31 facts about the most common disability in childhood.

Join us on the green carpet! Help show the world what CP looks like and wear green to support the 17 million people living with cerebral palsy.

SDR Update: Pilates and Physical Therapy

Nearly 3.5 years after my surgery, I finally found something worthy of some of my fundraising money: a purple (my favorite color) AeroPilates Reformer Plus purchased on eBay!


I’ve heard about the benefits of Pilates, and I’ve wanted to try it.  I know it will work my muscles in an entirely different way. Jumping around is fun but I look forward to gentler form of exercise. I know it will work my muscles in an entirely different way. Looks easy? Think again!

Thank you to everyone who donated to my fundraiser. I’m putting the money to good use. This is What CP Looks Like!

World CP Day T-Shirt Sale

I’m honored to have my name on this shirt — designed by my friends Richelle Heath, Heaven Ramsey and their team — to raise awareness for World CP Day on October 5.  Please join their World CP Day t-shirt Sale event on Facebook.

It’s so cool to see so so many of my friends’ names on the this design — along with world-renowned neurosurgeon for SDR Dr. Park  — plus Alyssa Porter and Christopher Ulmer from Special Books by Special Kids. The shirt also includes the #WorldCPDay hashtag per request from Robyn Cummins at World CP Day!

Help us paint the world green by purchasing a shirt and/or sharing this blog post to increase sales. The shirts will be on sale from July 4 – September 15, 2016. **The prices include shipping and handling.** Note: You DO NOT need a PayPal to make a purchase! Click on the link and it will give you OTHER payment options. **U.S. orders ONLY.** Every shirt comes with a free pin and wristband!

Thank you for supporting the estimated 800,000 children and adults (I am one) in the United States — and over 17 million worldwide — living with cerebral palsy. Let’s show the world What CP Looks Like!

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What CP Looks Like

I’ve created a new Facebook page so the cerebral palsy community can show the world what we CAN do! Help us spread awareness — invite friends, share, tweet (use the hashtag #whatCPlookslike) — for CP and shatter stereotypes! Join the campaign and show the world that you’re enabled, not disabled!

 

 

Celebrating Cerebral Palsy Awareness Month 2016

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I have cerebral palsy, and until I started advocating for selective dorsal rhizotomy (SDR), I was unaware March is Cerebral Palsy Awareness Month or that March 25 is National Cerebral Palsy Awareness Day in the U.S. every year since 2013, when a resolution was passed in Congress. I also didn’t know that World Cerebral Palsy Day is celebrated each year on the first Wednesday in October.

Cerebral palsy is the most common childhood disability, yet we rarely hear about Cerebral Palsy Awareness Month or National Cerebral Palsy Awareness Day in the news. Why isn’t the media paying attention? In an effort to change this I — along with many of my friends and fellow CP advocates — have been posting facts, pictures and videos on Facebook and other social media sites throughout the month. Our goal is to educate, raise awareness and paint the world green for CP. I wrote to President Obama and The White House responded!

Here are the 31 days of Cerebral Palsy Awareness Month according to Firefly:

  1. “Cerebral palsy isn’t contagious. Relax”
  2. “Cerebral palsy is caused by the bit of your brain that controls your muscles.”
  3. “Over 90% of Cerebral Palsy cases are caused pre-birth.”
  4. “Cerebral Palsy doesn’t necessarily mean learning disabilities. People with CP often have an equal or better IQ than everyone else.”
  5. “Most people with CP have a similar life expectancy to everyone else. We’re not leaving anytime soon.”
  6. “Cerebral Palsy doesn’t mean never walking. Many can, many will.”
  7. “Cerebral Palsy can impair communication but we find ways.”
  8. “Kids with CP are still kids. Nothing more, nothing less.”
  9. “About half of kids with CP are born prematurely.”
  10. “There’s no cure for cerebral palsy yet. But nobody is giving up.”
  11. “People with cerebral palsy can lead completely independent lives.”
  12. “Many kids wth cerebral can, will, & should go to mainstream schools.”
  13. “Cerebral palsy doesn’t always save you from a stressful, high-pressure job.”
  14. “Cerebral palsy doesn’t necessarily improve or worsen on its own.”
  15. “There’s nothing ‘wrong with me,’ I just have cerebral palsy.”
  16. “You’ll see many competitors with cerebral palsy in this month’s winter Paralympics.”
  17. “There are four types of CP: Spastic, Dyskinetic, Ataxic, & Mixed.”
  18. “Cerebral palsy is the most common childhood disability.”
  19. “CP affects about 17 million people, equivalent to everyone in the Netherlands.”
  20. “Around 350 million people are connected to someone with CP.”
  21. “Every case of cerebral palsy is as unique as the person who has it.”
  22. “1 in every 500 babies is diagnosed with CP.”
  23. “Two thirds of kids with CP can walk.”
  24. “4 in 5 kids with CP can talk (some too much).”
  25. “Only 1 in 10 kids with CP have severe visual issues.”
  26. “CP can affect all limbs or just some of them.”
  27. “Parents raising a child with CP do not get the huge financial support many people think.”
  28. “One child every hour is diagnosed with CP.”
  29. “3 in 4 kids experience recurring pain as a result of cerebral palsy.”
  30. “Most people with cerebral palsy don’t want sympathy, they want opportunities.”
  31. “Raising a child with CP isn’t the parenting journey I expected, but I don’t resent anyone else’s.”

Visit Firefly’s FB Page to view the complete postcard gallery.

For people living, thriving with cerebral palsy, spreading awareness is important every day. It doesn’t stop once March is over. You can help by sharing this post. And, join us on World Cerebral Palsy Day on October 5.