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Nicole Luongo | What CP Looks Like

Cerebral Palsy Awareness + Education

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  • About Nicole
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  • 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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    • Newsletter

    whatcplookslike

    #Author of Naked Desires
    >100 #GoGreen4CP #cerebralpalsy lightings Founder #whatcplookslike #Writer @huffpost @themightysite @yahoo @yoocandoanything
    A few years ago, while serving on the #WorldCPDay A few years ago, while serving on the #WorldCPDay Committee, my friends at @WorldCPDay (10/6) asked us to submit a quote. I sent this one, and it blew up for good reason... Most of the time, when the media covers a CP story, it’s about a cute kid. Don’t get me wrong — I have nothing against cute kids, I was one. The problem is that many resources are only available to children, even though they will grow up to be adults with CP. Unfortunately, adults with CP don’t get the help they need. I didn’t. I’m 48, and as shocking as it sounds, I NEVER received physical therapy growing up. I discovered it on my own when I was in my 30s. And, I never heard of SDR (selective dorsal rhizotomy) surgery, which would have changed my life much sooner if I had it as a child, instead of as an adult at nearly 40 years old. So, if you’ve ever wondered where that viral quote came from, now you know! P.S. In 2019, I became the first person EVER to secure over 100+ #GoGreen4CP lightings in almost all 50 states — on TWO different days of the year (March 25 on National Cerebral Palsy Awareness Day + October 6 on World CP Day). ⬇️⬇️⬇️ THIS year in 2021, I came up with the idea to petition The White House to light up in green and it has over 41K signatures — which happened in just TWO months. 💚💚💚 #NicoleLuongo #CerebralPalsy #whatCPlookslike #Advocate #AdvocacyMatters #RepresentationMatters #AdultsWithDisabilities #DisabilityQuotes #MillionsOfReasons #ViralQuote #SDRChangesLives #ThrowbackThursday [ID: A white background. In the middle there is a screenshot from Nicole’s logo on her website. It’s a quotation from Nicole in a dark gray box. There is a green box on top of the gray box. At the top, there is a quotation mark in white, followed by a white line. The quotation reads: “Children with CP become adults with CP. They need help and their stories need to be told too.” The name Nicole Luongo appears at the bottom. Underneath the name it says CEREBRAL PALSY AWARENESS • EDUCATION.]
    [ID: A tweet from Nicole Luongo at green4cp that s [ID: A tweet from Nicole Luongo at green4cp that says “Let’s normalize #Accessibility in #Hollywood. If disabled actors can’t get on the stage, that’s excluding inclusion.”#NicoleLuongo #CerebralPalsy #whatCPlookslike #Emmys2021 #Emmys #DoBetter #DisabilityTwitter]
    Jumping into a new week like... There’s more t Jumping into a new week like... There’s more to me than advocacy. I have #CerebralPalsy and I love to workout!🏋️‍♀️Please subscribe to my What Cerebral Palsy Looks Like YouTube Channel. Link in bio! 💚💚💚 #NicoleLuongo #DisabilityAdvocate #YouTube #whatCPlookslike #CPStrong #CerebralPalsyAwareness #GoGreen4CP #FitnessMotivation #WorkoutMotivation #MondayMotivation #JumpingJacks [Video description: Nicole is doing jumping jacks in her living room. She’s wearing a green, sleeveless top and black workout pants.]
    There’s more to me than advocacy. I have #Cerebr There’s more to me than advocacy. I have #CerebralPalsy, and I love to cook in my @instantpotofficial! • • Don’t be chicken 😂. Swipe and then watch my IG stories today to see how to make a whole chicken (from @wildforkfoods) using an IP and an IP Air Fryer lid. 🍗🍗🍗 #NicoleLuongo #DisabilityAdvocate #Cooking #whatCPcookslike #whatCPlookslike #InstantPot #ChickenRecipes #AirFryerRecipe #MotivationMonday [ID: 1. A picture of a whole, uncooked chicken on a white plate. 2. A picture of a whole, uncooked chicken covered with a spice blend, on a white plate. 3. A picture of a cooked whole chicken inside of an Instant Pot. 4. A picture of a cooked whole chicken in an Instant Pot air fry lid basket, inside an Instant Pot.]
    In 2013, I had SDR (selective dorsal rhizotomy) su In 2013, I had SDR (selective dorsal rhizotomy) surgery with world-renowned neurosurgeon, Dr. Park. Learn about the journey that propelled me on the path to advocacy at the link in my bio or go to https://nicoleluongo.com/sdr-changes-lives-one-year-later/. • • Be sure to check out the SDR tab on my website for FAQS, before/after videos + more! 💚💚💚 #NicoleLuongo #whatCPlookslike #CerebralPalsy #DisabilityAdvocate #AdvocacyMatters #SDRChangesLives #STL #StLouis [ID: A picture of Nicole sitting on an olive green couch. She’s smiling directly at the camera. She’s wearing makeup, and she has straight dark brown hair with caramel highlights. She’s wearing an official blue shirt from St. Louis Children’s Hospital with text in white letters that says: Selective Dorsal Rhizotomy Center for Cerebral Palsy Spasticity.]
    I’ve never walked a red carpet, but in my previo I’ve never walked a red carpet, but in my previous life as a member of #ToastmastersInternational, I might have been known for glamming it up a time or two. 😉 #NicoleLuongo #whatCPlookslike #FBF #FlashbackFriday #Flashback #Florida #SouthFlorida #Toastmasters [ID: A throwback picture of Nicole. She's smiling, standing in front of a picture and a table with a flower arrangement on it. Nicole has straight dark brown hair with highlights and she's wearing a glamorous black, floor length dress with a vertical see-thru rhinestone panel down the center from the chest to the waist of the dress.]
    September is #SelfCareAwarenessMonth! • • Chec September is #SelfCareAwarenessMonth! • • Check out my blog post (with video) for some simple self-care tips. Link in bio. ⬇️⬇️⬇️ I want to know…how do you practice self-care? 💚💚💚 #NicoleLuongo #CerebralPalsy #whatCPlookslike #SelfCare #SelfCareSeptember #SelfCareTips #MotivationMonday [ID: A screenshot from Nicole’s website. A grey background. Nicole’s website logo is at the top. It’s a quote from Nicole inside a green box which says, “Children with CP become ADULTS with CP. They need help and their stories need to be told too.”Underneath the quote in green capital letters, is the website’s tag line: CEREBRAL PALSY AWARENESS EDUCATION. In the center of the page is the title of the blog post: Cerebral Palsy Self-Care Tips. Underneath to the left, there is a graphic in a green background with black letters which says Keep Calm and Practice Self-Care. Below that, there is the beginning text of the blog post in black letters. It says: Let’s talk about cerebral palsy self-care tips. In this video, I discuss simple things we can do to take care of ourselves. Here are some examples: Drinking water, Taking Vitamins, Exercising (hyperlinked in green text), Meditating, Listening to music.]
    Thank you to Amy @conference4cp for making this vi Thank you to Amy @conference4cp for making this video! #Repost @conference4cp with @make_repost ・・・ Check out our amazing speaker lineup for the 6th Annual New England Cerebral Palsy Virtual Conference on October 1-2! Registration is FREE - sign up today! Link in bio. 💚💚💚 #advocates #cpne2021 #cerebralpalsy #cerebralpalsystrong #cerebralpalsyawareness #virtualconference #free #whatcplookslike
    YOU’RE INVITED to join us on October 1st & 2nd a YOU’RE INVITED to join us on October 1st & 2nd at our VIRTUAL conference. Registration is FREE at the link in my bio! In case you don’t know, I’m this year’s Conference Coordinator. I’ve worked hard to bring you an incredible lineup of speakers including: @mightymissmaya @realchelseabear @pauuzzo @pronetoride @therealnathantodd @gregory_iron @davidscpfitness @christine_astarita @erin.claiming_disability_llc @r.a.r.e.advoc8 + MORE! I’d be so grateful if you’d do me a solid — please SHARE to help spread the word! Thanks, see you there! 📷: @conference4cp 💚💚💚 #NicoleLuongo #CerebralPalay #whatCPlookslike #CPNE2021 #Connection #Free #VirtualConference [ID: A white background. It reads New England Cerebral Palsy Conference in dark green letters outlined in black. Underneath it says 6th in dark green outlined in black. To the right, there's an outline of the map of Vermont, colored in light green. The hastag #cpne appears towards the lower right of the map.]
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