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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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  • Follow This Success Formula, Achieve Anything!

    Cerebral Palsy

    Follow This Success Formula, Achieve Anything!

    Nicole Luongo shares the success formula she applied after selective dorsal rhizotomy (SDR) surgery. Follow her simple advice to achieve anything in life. Ability + Motivation + Attitude = The Secret to Success!

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  • Ode to Michael Jackson: The King of Pop

    Poetry

    Ode to Michael Jackson: The King of Pop

    Michael Jackson’s death inspired poet Nicole Luongo to write an ode to The King of Pop. This clever poem will test your knowledge of 21 of his songs. How many of them do you know?

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  • Bike Camp Bravery with Cerebral Palsy

    Cerebral Palsy

    Bike Camp Bravery with Cerebral Palsy

    Cerebral palsy advocate Nicole Luongo vlogs about braving bike camp at 41 years old, after having selective dorsal rhizotomy (SDR) surgery in 2013. Watch her do what she once thought was impossible.

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  • Angst of Alzheimer's

    Writing

    The Angst of Alzheimer’s

    What does life look like if forgetting is your normal state of mind? Disability advocate Nicole Luongo shares her Alzheimer’s caregiver experience in honor of her mom.

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  • Social Media: Friend or Foe?

    Writing

    Social Media: Friend or Foe?

    How friendly is Facebook? Social media connects us, yet Americans are lonelier than ever. In this video, Nicole Luongo shares statistics + tips on how to stay sane, take control online.

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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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Meet Nicole

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

AS SEEN ON

Nicole Luongo on Yahoo!

Go Green for CP

Categories

Walking after SDR!

FEATURED ON

Nicole Luongo on HuffPost
Nicole Luongo on The Mighty
Nicole Luongo on Yoocan

Affiliate Links

Nicole Luongo on Medium

My Articles on Medium

Mr. Rebates

Majestic Bed Affiliate Link

The Embrace Majestic Bed is specifically designed to relieve joint + spinal pain associated with cerebral palsy.

Web Hosting

whatcplookslike
Write President Joe Biden at whitehouse.gov/contac Write President Joe Biden at whitehouse.gov/contact. Tell him you want the #WhiteHouse to #GoGreen4CP for #CerebralPalsy on National #CerebralPalsyAwarenessDay 3/25/22. You may remember that in 2019, I became the first person EVER to secure 100+ #GoGreen4CP lightings in 48 states on both National Cerebral Palsy Awareness Day AND World CP Day. I did it on my own without any experience, money or sponsors. In 2021, I started a campaign (my pinned tweet has almost 60k views) — which was the impetus for a petition that has almost 50k signatures — to get President Joe Biden @potus to 💡 the #WhiteHouse on National Cerebral Palsy Awareness Day (3/25/21). Why is this is important? ⬇️⬇️⬇️ 1. Cerebral palsy is the most common physical disability in childhood, yet it gets the least attention. According to the CDC, 1 in 345 children in the U.S. have CP, with over 17 million adults + children affected worldwide. 2. There is NO federal funding for cerebral palsy. 3. Parents with children who have CP are often given the “doom and gloom” speech (everything their child won’t accomplish) along with the diagnosis. They aren’t given many resources AT ALL, so they turn to social media for help, becoming advocates in the process. 4. Adults like me with CP don’t always receive adequate, quality medical care because we’re not children anymore. I’m famously quoted as saying: “Children with CP grow up to be adults with CP. They need help, and their stories need to be told too.” CP (and all the challenges that come with it) would FINALLY get the attention it deserves if TWH lit up in green! Do you want to help? GET INVOLVED! Write to http://whitehouse.gov/contact. Let’s get this done on 3/25/22! PLEASE SHARE and tag anyone who may be able to help us. 💚💚💚 #NicoleLuongo #Advocacy #CerebralPalsyAwareness #CPAwareness #DisabilityAwareness #RepresentationMatters #whatCPlookslike
You may remember that in 2019, I became the first You may remember that in 2019, I became the first person EVER to secure 100+ #GoGreen4CP lightings in 48 states on both National Cerebral Palsy Awareness Day AND World CP Day. I did it on my own without any experience, money or sponsors. In 2021, I started a campaign (my pinned tweet has almost 60k views) — which was the impetus for a petition that has almost 50k signatures — to get President Joe Biden @potus to 💡 the #WhiteHouse on National Cerebral Palsy Awareness Day (3/25/21). Why is this is important? ⬇️⬇️⬇️ 1. Cerebral palsy is the most common physical disability in childhood, yet it gets the least attention. According to the CDC, 1 in 345 children in the U.S. have CP, with over 17 million adults + children affected worldwide. 2. There is NO federal funding for cerebral palsy. 3. Parents with children who have CP are often given the “doom and gloom” speech (everything their child won’t accomplish) along with the diagnosis. They aren’t given many resources AT ALL, so they turn to social media for help, becoming advocates in the process. 4. Adults like me with CP don’t always receive adequate, quality medical care because we’re not children anymore. I’m famously quoted as saying: “Children with CP grow up to be adults with CP. They need help, and their stories need to be told too.” CP (and all the challenges that come with it) would FINALLY get the attention it deserves if TWH lit up in green! Do you want to help? GET INVOLVED! Write to http://whitehouse.gov/contact. Let’s get this done on 3/25/22! PLEASE SHARE and tag anyone who may be able to help us. 💚💚💚 #NicoleLuongo #Advocacy #CerebralPalsyAwareness #CPAwareness #DisabilityAwareness #RepresentationMatters #whatCPlookslike
Who’s ready? Stay tuned… 💚💚💚 #NicoleL Who’s ready? Stay tuned… 💚💚💚 #NicoleLuongo #DisabilityAdvocate #Advocacy #CerebralPalsy #whatCPlookslike #CerebralPalsyAwareness #Disabilities #DisabilityAwareness #GeneralHospital #RepresentationMatters [ID: Two tweets, one on top of the other. The top tweet from Nicole Luongo reads: “Maurice Benard I interviewed you last year to raise attention for National #CerebralPalsy Awareness Day (3/25). This year, I’d love to continue our collaboration on IG live. What do you think?” The bottom tweet from Maurice Benard @mauricebenard reads: “We will do something could be awhile I have some things coming down the pike.”]
On International Day of Persons with Disabilities On International Day of Persons with Disabilities (@idpwd_org) remember that we want, DESERVE the same things as everyone else: * An ACCESSIBLE environment (home, work, travel, etc.) without having to FIGHT for it EVERY. DAY. * Good, quality HEALTHCARE for our mental, physical well-being * LOVE and the RIGHT to MARRY without losing our disability benefits * The RIGHT to earn as much MONEY as we're capable of without being penalized What would you add? Tell me in the comments below! 💚💚💚 #Accessibility #CerebralPalsy #Disabilities #DisabilityRights #DisabilityPride #IDPD #IDPwD #IDPwD2021 #Equality #Healthcare #Inclusion #whatCPlookslike [ID: A white background. On the left is the official logo of International Day of Persons with Disabilities from Google Images. On the right, the text in blue reads: International Day of Persons with Disabilities 3 December.]
It’s #GivingTuesday, so I donated to my friend @ It’s #GivingTuesday, so I donated to my friend @maryfashik’s campaign. Every little bit helps, so please donate if you can, OR simply share the link so people can contribute. I know the stress, uncertainty involved with a fundraiser. Back in 2013, I spent six months of my life sharing my SDR fundraiser non-stop, and I’ll never forget all the kind people (most of whom I don’t know) who helped me. I still have a list of every single donation. Mary has #CerebralPalsy, and she needs a new wheelchair. Unfortunately, custom medical equipment is EXPENSIVE, often NOT covered by insurance. It shouldn’t be that way…but it is… Mary has helped so many of us with her advocacy work, so let’s help her. Merchandise is now available in her store, and the proceeds go towards the fundraiser. Go to @upgradeaccessibility to learn more. **NOTE: If you’ve been following me for awhile, you know that I DON’T share random fundraising links on my pages, so please don’t ask. I personally know Mary.** She’s #whatCPlookslike! #Repost @courtney.has.words with @make_repost ・・・ 🍂In spite of the injustice over the last week, WE have an opportunity to bring about true liberation for a dear friend and comrade. Mary Fashik is a queer, brown disability activist and the founder of @upgradeaccessibility. Mary is a wheelchair user and is in need of an accessible van. We are seeking to raise $75,000 so that she can purchase the van that will meet all of her mobility needs. Obtaining this van would mean Mary can attend much needed doctor’s appointments, see friends and family, and continue her important liberation work. If you are looking for a place for your energy and resources during this very difficult time, please seriously consider sharing this post and giving to our fundraiser. Also look out for a special merch in the coming weeks with all proceeds going to our fundraiser! 💜 (Post Description in the comments).
#ThabkfulNovember Day 24: The holidays are hard fo #ThabkfulNovember Day 24: The holidays are hard for me. I’m thankful for this box of treats that arrived (via @justjillbauer)! Thanks Susan @littleredkitchen …YUM! Happy Thanksgiving to you, your staff, and to Jill and her family, too. 🦃🦃🦃 #Bakery #Cookies #Blondies #AllNatural #Homemade #SmallBatch #Brooklyn #JustJill #SupportSmallBusiness
#ThankfulNovember Day 22: I’m thankful to the Un #ThankfulNovember Day 22: I’m thankful to the Universe for the package of chicken thighs that accidentally ended up in my delivery order last week. I was all out! Chicken soup in an @instantpotofficial Pot is THE BEST! I mixed two @betterthanbouillon flavors — chicken and garlic (which I’m trying for the first time)— OMG, try it!! ⬇️⬇️⬇️ *All the vegetables are from my @hungryharvest box. You can get $10 off your first box with my link (in bio).* Tip: Add fresh thyme to soup for even more flavor. 🍜🍜🍜 #GiveThanks #CerebralPalsy #ChickenSoup #ChickenSoupForTheSoul #InstantPot #Soup #whatCPcookslike [ID: A picture of chicken soup in a green bowl. It’s made with chicken thighs, chicken broth, garlic broth, carrots, celery, kale, onion, Ditalini pasta, fresh thyme, spices and BelGioioso Romano cheese.]
#ThankfulNovember Day 21: I’m thankful I’m a # #ThankfulNovember Day 21: I’m thankful I’m a #BoostedBabe (thanks, @publix). 💉 💉 💉 #Boosted #CerebralPalsy #whatCPlookslike #ModernaBooster #GetBoosted #GiveThanks #GetVaccinatedToBeProtected #SouthFlorida #SundayFunday [ID: Nicole is sitting in her car smiling at the camera. She’s wearing a purple shirt, and the right sleeve is pulled up to the shoulder, showing the Publix Pharmacy bandaid over the spot where the Moderna booster shot was administered.]
#ThankfulNovember Day 20: I’m thankful for this #ThankfulNovember Day 20: I’m thankful for this delicious recipe from Jeff @pressureluckcooking. It saved my bananas! They would have gone in the trash, but I repurpose them for baking. if you know me, you know I love Jeff, his books and his recipes. I used: @kitchenaidusa (stand mixer) @instantpotofficial Really Raw Honey @madhavafoods (Coconut sugar) @natureseats (Almond Flour) @ghirardelli (60% Cacao Dark Chocolate Chips) @organicvalley (Ghee) 🍌🍌🍌 #CerebralPalsy #whatCPcookslike #BananaBread #Baking #GlutenFree #InstantPot #Yum [ID: Four photos in a single layout. Counterclockwise 1. Uncooked banana bread mixture inside an official Instant Pot fluted Bundt pan. 2. Banana bread with dark chocolate chips in an official Instant Pot fluted Bundt pan. 3. A slice of banana bread with dark chocolate chips on a green plate. 4. Banana bread with dark chocolate chips on a multicolored plate.]
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