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Nicole Luongo | What CP Looks Like

Cerebral Palsy Awareness + Education

  • Home
  • About Nicole
    • Press
    • Published Articles
    • Contact
  • Book
  • Go Green for CP
  • Selective Dorsal Rhizotomy
    • SDR FAQS
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  • Nicole Luongo SDR Changes Lives

    Cerebral Palsy

    How SDR Surgery Changed My Life

    Cerebral Palsy advocate Nicole Luongo vlogs about how ‘SDR Changes Lives’ one year after selective dorsal rhizotomy surgery with Dr. T.S. Park on St. Louis, on the cusp of turning 40 years old.

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  • Dancing with SDR!

    Cerebral Palsy

    Dancing with SDR!

    Nicole Luongo is dancing with SDR six months after the life-changing surgery. Watch her walk up and down stairs without holding on for the first time ever!

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    • whatcplookslike
    WELCOME!! I'm an author, a published writer, and a WELCOME!! I'm an author, a published writer, and a disability advocate dedicated to raising awareness for cerebral palsy (CP) + selective dorsal rhizotomy (SDR), a life-changing surgery for adults (like myself) and children with cerebral palsy (CP). In 2021, I started a campaign to get the White House to light up in green on March 25 for National Cerebral Palsy Awareness Day. My efforts led to a tweet that has 60K+ views. This sparked a movement, and a Change petition which received 40K+ signatures in less than two months. In 2019, without any contacts, experience, money, or sponsors, I did what no other person, nonprofit, etc. has ever been able to do — secure over 100 #GoGreen4CP lightings in 48 states AND three other countries. I did the same thing on March 25 (National Cerebral Palsy Awareness Day), too. The project took six months of non-stop work. It all started with an idea.💡 In the words of #JFK, I believe “one person can make a difference, and everyone should try.” Anyone can be an advocate. There’s no right or wrong way to do it. The impossible is possible. Take it from me. 😉 Check out the list of lightings at https://nicoleluongo.com/go-green-4-cp/ You’ll see a picture of my first (ever) lighting on @worldcpday 2018 that was announced live on @king5seattle! What's next? I'll be 50 one week from today but the BIG NEWS is that ⬇ ⬇ ⬇ I’ll be interviewed by Stephanie Mansour @stepitupwithsteph for the @todayshow LIVE on her FB page on JUNE 27 at noon EST. You’ll learn more about my fitness journey, what I love about our Start Today family + more! If you've been following me for awhile, you know how hard I've worked over the years to get cerebral palsy represented in the National media. I found another way to do it! 💚💚 #NicoleLuongo #disabilityadvocate #whatCPlookslike #cerebralpalsy #cerebralpalsyawareness #representationmatters #disabilityawareness #fbf #FlashbackFriday #bucketlist #todayshow #starttoday #anythingispossible #SDRChangeslives IMAGE: Nicole is an Italian woman with straight, dark brown hair. She’s standing in front of a tree. She smiling, and she’s wearing hoop earrings and a Kelly green scoop neck top from @kimgravel.
    Here’s how to make almond butter in a @Vitamix! Here’s how to make almond butter in a @Vitamix! I’m using @bluediamond dark chocolate flavored almonds. YUM! #whatCPcookslike #cerebralpalsy #cookingmadesimple #easy #quick #homemade #almondbutter #Vitamix #foodreels #foodreelsinstagram
    Did you know I wrote a poetry book 20 years ago? A Did you know I wrote a poetry book 20 years ago? And you thought I was just a disability advocate. 😉 Check out my interview on @nbc6. Here I am on the set in 2007. Don’t miss the titular poem NAKED DESIRES — it’s a must-read! Consider yourself warned...it's 🔥! Check out the preview in my stories. Read the entire poem at the link in my bio or go to https://nicoleluongo.com/naked-desires-love-poem/ #author #poet #authorlife #authorsofinstagram #advocate #NationalPoetryMonth #books #poetry #lovepoetry #poetrybooks #unrequitedlove #disabledandproud #disabledauthor #throwback #throwbackthursday #disabilityadvocate #disabledandcute #whatCPlookslike
    Did you know that that people with disabilities ar Did you know that that people with disabilities are sexually abused at a rate of SEVEN times higher than the general population? Since April is #SexualAssaultAwarenessMonth, I wonder: Why does society continue to ignore this epidemic? Learn more, watch my interview with my friend Kathy O'Connell from @radiantabilities about how to have confidence and succeed at dating with a disability. Make sure you grab the free download about healthy sexuality + disabilities. LINK IN BIO or go to https://nicoleluongo.com/the-sexual-abuse-epidemic-society-ignores-kathy-oconnell/ #cerebralpalsy #whatCPlookslike #dating #disabilities #disabilityrights #sex #sexuality #sexualassault #sexualassaultawareness #interview #youtube
    Sixteen years ago today, I was interviewed on @nbc Sixteen years ago today, I was interviewed on @nbc6 about my book Naked Desires. Enjoy this reading of ‘The Sea.’ P.S. National Great Poetry Reading Day is April 28. Wondering how I got on t.v.? It’s simple: I asked! I was interested in a product that was featured on the show. I called the local business owner. I remember asking how she got on the show. I think she said her agent contacted the show. I don’t have an agent. I AM my own agent. What did I do? I went to the library (I didn’t have access to the Internet at home at the time), and I emailed the show. The rest is history! Watch the t.v. interview at the link in my bio or go to https://nicoleluongo.com/about-naked-desires-book/ #NicoleLuongo #cerebralpalsy #whatCPlookslike #author #poet #poetry #poetrybooks #poetryreading #throwback #reelsvideo #NationalPoetryMonth #Florida #SFLA *ALL SPAM LIKES, COMMENTS + MESSAGE REQUESTS WILL BE BLOCKED, REPORTED! STOP THE NONSENSE!
    Today is National Cerebral Palsy Awareness Day. LE Today is National Cerebral Palsy Awareness Day. LET’S TALK ABOUT SEX! Would you go up to a person (who doesn’t appear to have a disability) and ask if they’re able to have sex? NO! So, why do people with disabilities get bombarded with these questions ALL THE TIME? Thanks for watching this excerpt from my discussion with David @cerebralpalsyandfitnesspodcast in honor of National Cerebral Palsy Awareness Day (which is today, March 25)! 💚 We debunked a lot of CP myths. Click the link in David’s bio to WATCH the episode on YouTube (or listen to it wherever you listen to podcasts) or click HERE: https://youtu.be/UjumWtEzP8k Read more about at https://nicoleluongo.com/debunking-popular-cerebral-palsy-myths/ #whatCPlookslike #cerebralpalsy #myths #cerebralpalsyawareness #cerebralpalsyawarenessmonth #disabilities #sex #podcasts #Youtube #cpmyths #thinkbeforeyouspeak #reelsinstagram
    In the United States, March is Cerebral Palsy Awar In the United States, March is Cerebral Palsy Awareness Month. March 25 (TOMORROW) is National Cerebral Palsy Awareness Day. Cerebral palsy gets ignored by the media EVERY YEAR! It’s tiring to constantly remind people about the significance of March, especially since CP IS THE MOST COMMON PHYSICAL DISABILITY IN CHILDHOOD - for which there is no cure or federal funding. According to the @cdcgov, “recent population-based studies from around the world report prevalence estimates of CP ranging from 1 to nearly 4 per 1,000 live births or per 1,000 children.” Imagine what would happen if just 1/4 (I picked a low number on purpose) of the people (including the media) who posted about St. Patrick’s Day (a day everyone is already aware of) on social media also posted that March 25 is National Cerebral Palsy Awareness Day (a day most people have never heard of) in the U.S. (March is also Cerebral Palsy Awareness Month). Maybe then, advocates like me wouldn’t have to shout it from the rooftops. Think about it…but, don’t think too long because Cerebral Palsy Awareness Month will be over in SEVEN days. If you’d like to help, wear GREEN TOMORROW MARCH 25 ON NATIONAL CEREBRAL PALSY AWARENESS DAY and tell people why you’re wearing it. Thank you! 💚 I asked the CP community to contribute to my video project (see pinned post or reel) telling people ONE THING THEY SHOULD KNOW ABOUT CEREBRAL PALSY. The adults with CP (@uniqli_vivvi, @creativejj.photography, @oswaldperez85 @alex_kaiser0 who’ve already participated did a FANTASTIC job! I’m looking forward to seeing more videos tomorrow. 😉 NOTE: I didn't create the graphic, and I don't know who did. #advocacy #whatCPlookslike #cerebralpalsy #cerebralpalsyawareness #inclusion #representationmatters ID: A graphic with a green background a white letters that say March 25th is National Cerebral Palsy Awareness Day. Below the text, it says Wear some green...spread some love! There's a white ribbon at the bottom.
    We need to talk about disability language because We need to talk about disability language because #WordsMatter!!! Clearly there’s more work to be done if a neighbor who’s known me for close to 25 years describes me as “handicapped” and says it takes me awhile to get to the door (not true) to another neighbor, who inquired because he knocked on my door and I didn’t answer. I know this because went to the pool the other day. Two people sat down to talk. As I read my magazine, I overheard a woman raving to her friend about THE @instantpotofficial! I started talking to them (hello, I’m obsessed with my #InstantPot (s) and didn’t leave until FIVE hours later. As it turns out, the guy (and his wife, who wasn’t at the pool) live in the unit above me. They wanted to let me know that they’re installing new flooring, and to make sure the noise wasn’t too loud. Apparently, he knocked on my door the other day (no answer) and again today (no answer) not knowing I was at the pool. So, he told my neighbor at the end of the hall (who is the Treasurer on the board), and asked if she could let me know about the noise. That’s when I asked what she said. I was SHOCKED when he told me that she described me as handicapped! He said (based on what she told him) that he was expecting an elderly person in a wheelchair. I was so mad I think I he was afraid of me (joking, he understood)! Here’s a description my neighbor could have given INSTEAD: “My neighbor Nicole lives there. We don’t see her much, but she’s an author and a disability advocate. She’s pretty cool!” She has cerebral palsy, so I don’t know if it takes her awhile to get to the door or not.” What’s the LESSON? 1. The word handicapped isn’t appropriate language anymore. 2. The fact that I have a disability doesn’t HAVE to be the reason why I didn’t answer the door. Maybe I didn’t hear the knock, maybe I was in the shower, or maybe I wasn’t home (I was but I bring this up because disabled people have lives, too). Come on! P.S. The last time she came to my door, it took me longer to answer it because I was going to the BATHROOM. Also, I don't "suffer" with CP. READ: https://nicoleluongo.com/media-must-end-cerebral-palsy-news-trend/ Can you relate? #Quotes
    In the United States, March is Cerebral Palsy Awar In the United States, March is Cerebral Palsy Awareness Month. March 25 is National Cerebral Palsy Awareness Day. I participated in this project 5 years ago. Watch my pinned reel to learn how to participate in my 2023 project ONE THING YOU SHOULD KNOW ABOUT CP to help raise awareness. Please use the hashtag I created #whatCPlookslike, tag me @whatcplookslike. I look forward to seeing your videos! For more information about CP, go to my bio OR https://nicoleluongo.com/category/cerebral-palsy/ Here's What I want you to know about cerebral palsy: VD: Nicole is wearing a green and white top with her hair pulled back. She says: “My name is Nicole Luongo. What I want people to know about cerebral palsy is that adults and children who have cerebral palsy contribute positively to society. We are authors, we are writers, we are bloggers, we are YouTubers, we are athletes, we are musicians. We do a little bit of everything. So, if you have cerebral palsy, or if you're a parent of a child who was diagnosed with cerebral palsy, don't despair, look into your options and know that we are 17 million strong, and WE ARE HERE!” 💚💚💚 #NicoleLuongo #DisabilityAdvocate #whatCPlookslike #CerebralPalsy #CerebralPalsyAwareness #GoGreen4CP #Inclusion #RepresentationMatters #WhatIWantYouToKnow #YouTube
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