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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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  • Mental Health: Take Charge, Feel Better

    Cerebral Palsy

    Mental Health: Take Charge, Feel Better

    May is Mental Health Awareness Month. Let’s talk about it, take charge of it, end the stigma! Learn the statistics, tips to feel better and find out about the connection between cerebral palsy + mental health.

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  • White House Response Regarding Cerebral Palsy Awareness

    Cerebral Palsy

    White House Cerebral Palsy Awareness Response

    Disability advocate Nicole Luongo shares what happened when she wrote to The White House about Cerebral Palsy Awareness Month + SDR, a life-changing surgery for adults and children with cerebral palsy. Follow her tried-and-true tips to get your cause noticed.

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  • 3 Must-Read Cerebral Palsy Books

    Cerebral Palsy

    3 Must-Read Cerebral Palsy Books

    Nicole Luongo shares why you should put these 3 must-read cerebral palsy books on your list. Each features an author thriving with CP.

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  • These 7 Cerebral Palsy Advocates Need Notoriety

    Cerebral Palsy

    These 6 Cerebral Palsy Advocates Need Notoriety

    Meet the CP celebrities you should know. Writer Nicole Luongo tells why these 6 cerebral palsy advocates need notoriety for raising awareness for cerebral palsy — the disability that gets the least attention in the media.

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  • The Sexual Abuse Epidemic Society Ignores with Kathy O'Connell

    Cerebral Palsy

    The Sexual Abuse Epidemic Society Ignores

    The sexual abuse epidemic society ignores is the important topic I discuss with Kathy O’Connell from Radiant Abilities. Find out why people with disabilities are sexually abused at a rate of SEVEN times higher than the general population.

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  • About Nicole Luongo | What CP Looks Like

    Cerebral Palsy

    We Are Cerebral Palsy

    Author and poet Nicole Luongo pens this We Are Cerebral Palsy poem celebrating National CP Awareness Day in the United States on March 25 along with the 17 million people worldwide living with the most common physical disability in childhood.

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  • The Pain of Being The Girl Who Walked Funny

    Cerebral Palsy

    The Pain of Being ‘The Girl Who Walked Funny’

    In this moving blog post, disability advocate Nicole Luongo gets real about being the girl who walked funny, how it affected her life and how it inspires her to raise awareness for cerebral palsy, the most common physical disability in childhood.

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Meet Nicole

Welcome! I created What CP Looks Like to raise awareness for cerebral palsy, the most common disability in childhood.

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whatcplookslike
I love meeting new people. Rob’s a great guy! DM I love meeting new people. Rob’s a great guy! DM him to help him reach his goal of meeting 10K people! #Repost @robs10kfriends with @use.repost ・・・ 5074. “I was almost 40 years old and I was like wait a minute, why haven’t I ever heard of this surgery? So it really became my life’s mission to get the word out about this surgery.” Born 2.5 months premature, Nicole Luongo came into the world at 2 lbs 13 oz. “I was my mother’s last and 11th child.” She was also born with cerebral palsy, and therefore had to have heel cord lengthening surgery at 4.5 years old. “So I believe I didn’t walk ‘on my own’ until I was 5.” Always resourceful, though, Nicole constantly found ways to get around by putting shoes on her hands. “That’s how I am as a person where if I can’t do it the traditional way, I’m just gonna find some other way.” As she grew older, Nicole graduated with her Business degree from @floridaatlantic; however, she’s been most fulfilled when being an advocate. At 39 years old, she underwent a selective dorsal rhizotomy (SDR surgery), which changed her life. Afterwards, she had more mobility, including better abilities to climb stairs unaided and walk backwards. Wanting to spread the word, she shared her story in @huffpost only after staying persistent and reaching out to @ariannahuff directly. Nicole also managed to get 48 of 50 states (2 of them forgot) to light up green for CP in March of 2019! Now, though, she’s thinking of other ways to spread awareness by joining groups like @diversability and thinking of starting her own podcast! So nice to meet you, @whatcplookslike! #10kfriends #philly #fortlauderdale #florida #cerebralpalsy #advocate #resourceful #fau #sdrsurgery #huffpost #gogreenforcp #podcast #whatcplookslike #somegoodnews #robs10kfriends #meetingpeople #SDRChangesLives • How we met: Nicole came across my project via her friend, @imtiffanyyu (#3846), and then DM’ed me to meet! • Swipe to hear more about how Nicole spread the word about selective dorsal rhizotomy (SDR)! 🌎✍🏼 • Click the link in my bio if you’d like to support me via Patreon! 🙏🏼
From my blog post (link in bio): “The Disability From my blog post (link in bio): “The Disability Pride flag was designed by Ann Magill, a disabled woman. The flag has a black background with five zig zag lines diagonally across the flag in blue, yellow, white, red, and green. The lines symbolize a lightning bolt and each color represents the following: The black background represents the suffering due to ableism or violence; it’s also the color of rebellion and protest. The lightning bolt represents how individuals with disabilities must navigate barriers, and demonstrates their creativity in doing so. The five colors represent the variety of needs and experiences in our community: Mental Illness, Intellectual and Developmental Disabilities, Invisible and Undiagnosed Disabilities, Physical Disabilities, and Sensory Disabilities. The parallel stripes represent solidarity within the disability community, as well as all of its differences.” Click link in bio to read my Disability Pride Month poem or go to https://nicoleluongo.com/disability-pride-month-poem/ [ID: A picture of the Disability Pride flag designed by Ann McGill. The flag has a black background with five zig zag lines diagonally across the flag in blue, yellow, white, red, and green.] #Disabilities #DisabilityAwareness #DisabilityPride #DisabilityPrideMonth #Poetry #Poems #CerebralPalsy #whatcplookslike #RepresentationMatters
So honored to be a part of this! #Repost @r.a.r.e. So honored to be a part of this! #Repost @r.a.r.e.advoc8 with @use.repost ・・・ In TWO DAYS I’ll be joined by @dramykenny, @cara_yarkhan, and @whatcplookslike to KICK OFF the 9 conversation Power in Pride Celebration for Disability Pride Month with our first one diving into disability pride—what it means to us and why it’s so essential to dismantling The Ableist Society. This is a free grass roots DISABLED RUN event for all across the world to attend—we will even have some time at the end for the audience to share and ask questions as well. Thanks to our sponsor @diversability, each conversation will be held in the Diversability Clubhouse—RSVP link is in my bio where you can sign up for a clubhouse profile if you don’t have one! (https://bit.ly/PowerInPride1) This year threw me a lot of curve balls, so I’m truthfully so proud to say I didn’t give up on my goal to make Disability Pride Month something we can’t wait to celebrate. I’ve been so caught up in life & didn’t get a chance to really preview what we have coming up all July long, so you’ll have to just come along for the ride and tune in to find out 🖤 see you next Friday for Kick Off!! — [ID-a black background has two disabled zombies with neon skin dripping off their bumpy bones work together to hold up a sign that reads “the power in Pride celebration for disability pride month kick off with…” above 4 round pictures “tacked” to the sign, from left to right; Marie Dagenais-Lewis, Dr. Amy Kenny, Cara Elizabeth Yar Khan, and Nicole Luongo. Below the pictures are the words “July 1st @ 2 PM ET/11 AM PT in the Diversability Clubhouse. RSVP @ https://bit.ly/powerinpride1 Live Transcription Available” above a red, black and white logo that reads “grant winner Awesome Foundation awesomefoundation.org”. Centered at the bottom of the graphic are the words “thank you to our sponsor Diversability” in white.] — #DisabilityPride #PowerInPride #Grassroots #DisabilityPrideMonth #DisabledAndProud #FreeEvent #Clubhouse #CelebrateDiversity #Disabled #CerebralPalsy #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
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