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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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    • whatcplookslike
    Dr. Park changed my life nine years ago today when Dr. Park changed my life nine years ago today when I SDR (selective dorsal rhizotomy) surgery) in St. Louis. How do you thank the world-renowned doctor who had such a profound impact on your life? Well, ever since I found out about SDR (about six months before my operation), I’ve shared my journey so other adults and families with CP children are aware, can choose this life-changing surgery, too. Learning about Dr. Park, SDR put me on the path to advocacy. I’m proud to be the first (and only to my knowledge) person to publish an article about SDR on @huffpost in 2014. So many adults + children (just the one’s I know of; I’m sure there are more) from around the world have had SDR because I got mad, and decided to do something about it. I didn’t think it fair that people in the CP community stumbled upon this information — just like me. Hopefully, they find out about it much sooner than I did. I was almost 40! Want to learn more? Click the links my bio or visit my website at nicoleluongo.com. P.S. This picture was taken at my four-month follow-up appointment after my surgery on 3/29/13. 💚💚💚 #NicoleLuongo #DisabilityAdvocate #Advocacy #whatCPlookslike #CerebralPalsy #LifeChanging #MakeADifference #SDRChangesLives #STL #ThankYou #UseYourVoice #MyWhy❤️ [Image description: A photo of Dr. Park and Nicole taken at his office at St. Louis Children’s Hospital in 2014.]
    I’m #whatCPlookslike on @local10news! 💚💚💚 #NicoleLuongo #CerebralPalsy #CerebralPalsyAwarenessDay #GoGreen4CP #Florida #SFLA #ABCNews #WPLG #RepresentationMatters #SDRChangesLives
    @davidscpfitness Thanks for having me as your gues @davidscpfitness Thanks for having me as your guest for National #CerebralPalsy Awareness Day! Shoutouts to @mauricebenard @mbstateofmind + @wawosorg. Link in our bios and/or stories. 💚💚💚 #NicoleLuongo #CerebralPalsyAwarenessDay #CerebralPalsyAwarenessMonth #CerebralPalsyStrong #GoGreen4CP #IfICanDoItSoCanYou #YouTube #Podcasts #whatCPlookslike #SDRChangesLives
    As we celebrate National Cerebral Palsy Awareness As we celebrate National Cerebral Palsy Awareness Day today (March 25) let’s remember… #Repost @whatcplookslike with @make_repost ・・・ Say it louder for the ableist people in the back… 💚💚💚 #NicoleLuongo #Ableism #CerebralPalsy #Disabilities #DisabilityQuotes #FlashbackFriday #FBF #whatCPlookslike [ID: A green background with a white quotation mark. In the center, there’s a quote from Nicole in black text. It says: My disability doesn’t define me. I do. Nicole’s Instagram @whatcplookslike is below the text, in the center. There’s a small, black vertical line at the bottom of the graphic.]
    #whatCPlookslike • • Watch this space for a sp #whatCPlookslike • • Watch this space for a special NATIONAL CEREBRAL PALSY AWARENESS DAY podcast with host @davidscpfitness (give him and his YouTube channel a follow) and me on 3/25! • • I’d love to send you a personalized message on @cameo! Link in bio. 😉 💚💚💚 #NicoleLuongo #GoGreen4CP #CerebralPalsy #CerebralPalsyAwarenessMonth #CerebralPalsyStrong #DisabilityAdvocate #DisabilityPride #Podcasts #QVCBeauty #CameoFameo [Image description: Nicole is an Italian woman with short, straight dark brown hair. She’s wearing a green State of Mind Shirt @mbstateofmind from @mauricebenard.]
    This is how much 💰 the CEREBRAL PALSY FOUNDATIO This is how much 💰 the CEREBRAL PALSY FOUNDATION STAFF MAKES! That’s why they’re always asking the #CerebralPalsy community to fundraise and buy their T-shirts! They’re liars and they steal content from CP content creators. They’re stealing MY BRAND! Is this an organization you want to support? If the answer is yes, PLEASE UNFOLLOW ME ASAP. In case you’re wondering- What’s my annual salary ADVOCATING FOR CP 24/7/365: ZERO. 💚💚💚 #NicoleLuongoIsWhatCPLooksLike #whatCPlookslike #CerebralPalsy #GoGreen4CP #Stealing
    🚨I’ve worked hard to create a very peaceful l 🚨I’ve worked hard to create a very peaceful life. I don’t do drama, however, I have to speak up now. The Cerebral Palsy Foundation is stealing my What CP Looks Like brand and turning it into a campaign? NO. I WILL FIGHT FOR WHAT I CREATED IN 2014! It’s pretty sad when a CP nonprofit — their executives make six figures A YEAR EACH…Google it— steals my hashtag #whatCPlookslike instead of coming up with their own! I’ve never spoken about this publicly. THERE’S A REASON WHY YOU NEVER SEE ME SUPPORT THIS ORGANIZATION. I blocked them years ago. They are NOT who they pretend to be (said from personal experience with them DIRECTLY). PLEASE SHARE! This should NEVER happen. Unfortunately, it happens all the time. We can put a stop to it! 🚨 #NicoleLuongo #whatCPlookslike #CerebralPalsy #CerebralPalsyAwarenessMonth #CPAwareness #GoGreen4CP #IntegrityMatters #Stealing
    On #internationalwomensday, let’s not forget DIS On #internationalwomensday, let’s not forget DISABLED WOMEN! Here are some of my favorite accounts. Tag yours in the comments. ⬇️⬇️⬇️ @imtiffanyyu @r.a.r.e.advoc8 @maryfashik @victoriaannofficial @realchelseabear @pauuzzo @taramossauthor @radiantabilities @soaccessible @emilyladau @keah_maria @ashleybjacobson And, YOUNG advocates @briellaandme @discover_with_dallas @mightymissmaya @wawosorg 💚💚💚 #IWD #IWD2022 #Disabilities #DisabilityInclusion #StrongWomen #CerebralPalsy #whatCPlookslike #ThisGirlIsOnFire #RepresentationMatters #BreakTheBias [Image description: Nicole is an Italian olive toned skinned woman with straight, short dark brown hair. She’s wearing kids glasses by @eyebuydirect, bright lipstick from @doll10beautty, silver hoop earrings and a green shirt designed by @r.a.r.e.advoc8.]
    Today marks the beginning of Cerebral Palsy Awaren Today marks the beginning of Cerebral Palsy Awareness Month in the U.S. March 25 is National Cerebral Palsy Awareness Day. I know it's hard to keep advocating when it feels like our disability doesn't matter. IT DOES. I see you. I hear you. I'm advocating with you. Whatever you do this month, remember that YOU MATTER. YOUR STORY MATTERS. YOUR CP KIDS, SIBLINGS, LOVED ONES MATTER. Remember to take breaks because your mental health matters, too. Check out the various articles I've written at the link in my bio. You'll find everything from CP facts, a CP poem (plus poems from my book), my Go Green for CP campaign, my selective dorsal rhizotomy (SDR) journey, videos + more. And, if you want to support a disabled artist, you can order a copy of Naked Desires. 😉 P.S. My 9th SDR Anniversary is on 3/29. 💚💚💚 #NicoleLuongo #DisabilityAdvocate #CP #CerebralPalsy #CereberalPalsyAwareness #CPAwarenessMonth #whatCPlookslike #GoGreen4CP #SDRChangesLives [Image description: Nicole is an olive skin toned woman with short, straight dark brown hair. She's wearing gold hoops and a green sweater by @kimgravel @bellebykimgravel from @qvc. There's a beach-themed painting on the yellow wall behind her.]
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