“Most people with Cerebral Palsy have a similar life expectancy to everyone else. We’re not leaving anytime soon.”
“Most people with Cerebral Palsy have a similar life expectancy to everyone else. We’re not leaving anytime soon.”

I didn’t hear anyone promote cerebral palsy awareness growing up. First of all, no one talked about my disability; thus, I didn’t know what it was or why I had it. Similarly, no one represented me on t.v. I didn’t meet another person with CP until college.

It’s almost five decades later. CP is still the most common childhood disability, with over 17 million affected worldwide. Surely, this is enough to get the media’s attention. In fact, the opposite is true. Furthermore, many articles assume that we’re “suffering.”

Have You Heard These Popular Cerebral Palsy Myths?

Read more about Firefly’s 31 cerebral palsy facts: https://nicoleluongo.com/celebrating-cerebral-palsy-awareness-month/

Cerebral palsy affects 17 million worldwide, is the most common childhood disability, yet it’s still widely misunderstood. Let’s debunk some myriad — and sometimes heartbreaking — cerebral palsy (CP) myths we covered on What CP Looks Like’s chat:

1. Myth: Cerebral palsy is a disease.

Fact: NO! The National Institute of Neurological Disorders and Stroke defines CP as “a group of neurological disorders that appear in infancy or early childhood and permanently affect body movement, muscle coordination, and balance.” While it affects the part of the brain that controls muscle movements — cerebral palsy IS NOT contagious! …

My mom and me

How Being My Mom’s Caregiver Led to Life-Changing Surgery for Cerebral Palsy

I’ll never forget my mom’s reaction the first time she saw me walk. I’d walked since I was five years old, but as I approached 40, my gait was drastically different due to a life-changing surgery. I’d just had selective dorsal rhizotomy (SDR), a procedure that removed the spasticity caused by cerebral palsy. While we waited for the elevator to open, my mom’s eyes welled up when she said: “I’m sorry I didn’t know.”

Standing there stunned, clutching my walker, I hugged, reassured mom, trying to hold back…

I have cerebral palsy (CP) and in 2012, I stumbled across information on Facebook about a life-changing surgery called selective dorsal rhizotomy, or SDR. I’d just turned 39, wondered why I’d never heard about a procedure that could have made me — and my legs — navigate the world much easier. To learn more about SDR, check out my FAQS.

Applying for SDR

At first, I wasn’t going to pursue SDR. I knew my HMO insurance company wouldn’t let me go out of state, from South Florida to St. Louis, MO, for the surgery. It didn’t matter to them that Dr. T.S. Park…

Don’t You Forget About CP! In the United States, March is Cerebral Palsy Awareness Month and March 25 is National Cerebral Palsy Awareness Day. You’d think that the most common disability in childhood is constantly in the news during our month, but it isn’t. If that were true, I wouldn’t have to write yet another blog post about awareness.

How I’ve Raised Awareness for CP

Raising awareness is important to me. I’ve urged the media to stop describing adults and kids with CP as ‘suffering.’ Last year, I became the first person ever to get at least one building, landmark etc. in almost ALL 50 states…

Keeping kids with disabilities safe at school was the topic my FB live chat in the wake of the school shooting at Marjorie Stoneman Douglas High School on February 14, 2018 in Parkland, FL — located in Broward County, where I was born and still reside — which was praised as one of the safest cities in the country just days before the massacre. In the three months that have followed, we’ve witnessed countless shootings, including one today at a Indiana middle school.

As a person with cerebral palsy, I wonder: What happens to students with disabilities and/or special needs…

The thrill of victory. The agony of defeat. The human drama of athletic competition.” -Stanley Ralph Ross

Go for Gold: How to Win at Life Like an Olympian

The excitement of the Olympics is contagious! We admire the athletes’ dedication, endurance and physical prowess. While holding our breath, we celebrate heroic feats with cheers and fist pumps. The Olympics represent what it means to be the best; to be a winner. Although the goal is to stand on stage sporting a shiny medal, every competitor is a winner simply for showing up. The same is true in the game of life. Kellog’s “From Great Starts Come Great Things” Olympic campaign beautifully…

Here are 6 cerebral palsy advocates you’ve probably never heard of — and why you should:

  1. Charisse Hogan
  2. Sadie McCallum
  3. Brandon Mendenhall
  4. Kathy O’Connell
  5. Ryan Raghoo
  6. Heaven Ramsey

Notice anything? There isn’t a celebrity in the bunch. While these advocates with cerebral palsy aren’t famous, they should be. Read on — and follow the links for more info, What CP Looks Like FB Live interviews, etc. — to find out why these seven people need to be on the new list of CP celebrities!

Charisse Hogan

Charisse Hogan is a YouTuber + public speaker living with a rare type of cerebral palsy…

Here are 3 must-read cerebral palsy books written by people who have CP — and, one who thought she did for 30 years — until being diagnosed correctly!

1. Misdiagnosed: My Thirty-Year Struggle with a Debilitating Disorder I Never Had by Jean Sharon Abbott

You won’t want to put down this beautifully written memoir by my friend, Jean Sharon Abbott. It describes her “journey from wheels to heels” — a powerful, uplifting story of faith and perseverance. I was engrossed in her story, how her positive outlook remained in tact despite decades of doctor visits, medical procedures, and surgeries. What I love most about Jean is her commitment to giving back — she travels across the…

Today is March 17 — St. Patrick’s Day — and it seems the whole world is seeing green! By tomorrow, all posts about pots o’ gold Irish eyes are smilin’ will be gone. The color of luck, money won’t be splashed all over social media. But, it needs to be. Here are 10 reasons why you should wear green after St. Patrick’s Day:

  1. Cerebral palsy is the most common physical disability in childhood.
  2. There are over 17 million people in the world living with cerebral palsy.
  3. March is Cerebral Palsy Awareness Month
  4. March 25 is National Cerebral Palsy Awareness Day.

Nicole Luongo

I’m an author, a cerebral palsy advocate, and a writer. I’m also the host of the CP Conversations podast. https://nicoleluongo.com

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