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Nicole Luongo | What CP Looks Like

Cerebral Palsy Awareness + Education

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  • About Nicole
    • Press
    • Published Articles
    • Contact
  • Book
  • Go Green for CP
  • Selective Dorsal Rhizotomy
    • SDR FAQS
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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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  • 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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    • whatcplookslike
    A day late, but did you know you can make #Popcorn A day late, but did you know you can make #Popcorn in an @instantpotofficial?!? I used @betterbodyfoods coconut oil + @preferredpopcorn from @hungryharvest) YUM! #InstantPot #CoconutOil #Popcorn #NationalPopcornDay #whatCPcookslike
    Be on the lookout for me in a special digital seri Be on the lookout for me in a special digital series with @stepitupwithsteph for START TODAY @todayshow! Date to be determined. If you want your dreams to come true, you must create doors where they don’t exist, go thru the back door if you can’t get in the front door, and be undeterred when you get a NO. THERE’S MORE THAN ONE WAY. Just keep trying! P.S. All spam comments will be BLOCKED. ID: Nicole is an Italian American woman with straight dark brown hair. She’s smiling, and she’s wearing makeup, rose gold hoop earrings and a bright pink top. Brands I used: @calistatools (The Triangl hair straightening tool) @bellebykimgravel (top from @kimgravel for @qvc) @doll10beauty @flowerbeauty @joanrivers Beauty Great Hair Day Fill-In Powder (QVC) @hauslabs @itcosmetics @lauragellerbeauty @mallybeauty by @mallyroncal @tartecosmetics #NicolesNuggets #whatCPlookslike #CerebralPalsy #Fitness #BucketList #AlmostFifty #QVCBeauty #BelieveInYourOwnBeauty #RepresentationMatters #TodayShow
    HEY HEY I’m ready to start interviewing people a HEY HEY I’m ready to start interviewing people again!! My 10 year SDR (selective dorsal rhizotomy) surgery Anniversary with Dr. Park is coming up on 3/29/23. Many of you know how it changed my life. Now, I want to hear how it changed YOUR life or your child’s life. Let’s help more adults + children with cerebral palsy learn more about this life-changing operation. Over the years, my story has been published by HuffPost, Yahoo, The Mighty and more media outlets. Many adults and children from all over the world have gone on to have the surgery because of my story. Are you interested in sharing your story with me? Shirt by my friend @r.a.r.e.advoc8. #whatCPlookslike #cerebralpalsy #SDRChangesLives #interviews #podcasts #instagram #clubhouse
    This is me when I was five years old. I just wante This is me when I was five years old. I just wanted to be loved, accepted. The same is true today. When you grow up with a disability, you’re different from everyone else. That’s just the way it is. Back then, I didn’t know anyone with cerebral palsy. There weren’t other kids who were like me, in the same way. No one understood what it felt like to be stared at all the time, or get teased for walking funny. There were no awareness days when I was young…heck no one even talked about CP. I didn’t even know what it was, just that I had it. Cut to forty-four years later. Everyone’s talking about accessibility, disability awareness and inclusion. How about including CP in the NATIONAL MEDIA? Maybe if it got just some of the coverage given to other disabilities and/or causes, we could move the needle because… Cerebral palsy IS the most common disability in childhood yet… * There is NO federal funding for it * Parents are given little to NO information about it when their child is diagnosed * Adults (like me) are often left to fend for ourselves, unable to find doctors who are knowledgeable about CP. We simply don’t get vital care, resources we need throughout our lives. Raise your hand 🙋‍♀️ if you think this is UNACCEPTABLE?!?! These are just some of the reasons raising awareness for @worldcpday is important to me. The media isn’t going to help us, so WE must do it. Let’s light up social media in green on OCTOBER 6! There are little boys and girls and adults, with CP too, all over the world, who just want to be ACCEPTED. LOVED. SEEN. Let’s show them that they are, and that they’re not alone. Let me know in the comments…what (or who) is your reason for wearing green today? 💚💚💚 #NicoleLuongo #CerebralPalsy #whatCPlookslike #MillionsofReasons #WorldCerebralPalsyDay #GoGreen4CP #InclusionMatters #RepresentationMatters [ID: A picture of Nicole at five years old. She’s smiling, and she’s wearing makeup (that she probably applied). She has straight, dark brown hair in pigtails tied with lavender fabric. A Facebook frame with the words WORLD CEREBRAL PALSY DAY OCT 6 are shown in the upper left hand corner of the picture.]
    When I served on the World CP Day Committee for @w When I served on the World CP Day Committee for @worldcpday, members were asked 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 grow up to be adults with CP. Unfortunately, adults don't get the help they need. I didn't. Note: I didn't get any help when I was a kid, either. I'm angry that adults with cerebral palsy DON'T get the help or resources they need. NEWS FLASH: CP doesn't go away when we turn 18! I'm mad that my disability is always forgotten, especially in the media. I'm tired of reminding the world of a day that was created by @cpalliance in 2012. Since October is National Disability Employment Awareness Month, this is a call to action to all NONPROFITS and platforms that publish our articles: PLEASE PAY disabled people for their CONTENT, expertise + knowledge. You don't work for free, so why should we? Here's how YOU can help: SHARE THIS POST and don't forget to #GoGreen4CP TOMORROW, OCTOBER 6, for World CP Day! P.S. Do you remember this @simplemindsmusic song? Link in bio or go to https://nicoleluongo.com/dont-you-forget-about-cp/ 💚💚💚 #Advocacy #CerebralPalsy #CallToAction #NDEAM #NoPayNoWay #RepresentationMatters #LetsDoThisTogether #WorldCPDay #WednesdayWisdom #GreatQuotes #ISaidIt [ID: A gray background. In the middle, there's a picture of Nicole's logo on her website. It's a quotation from Nicole in a dark gray box. There's a green box on top of the gray box. At the top, there's 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 right. Underneath the quote in bold, bright green letters it says CEREBRAL PALSY AWARENESS followed by a green dot and the word EDUCATION.]
    @worldcpday is on October 6. How will you be celeb @worldcpday is on October 6. How will you be celebrating? FUN FACT: World CP designed this logo for my #Groundbreaking Go Green for CP campaign. 💚💚💚 Learn 5 reasons to #GoGreen on #WorldCPDay at the link in my bio or go to: https://nicoleluongo.com/go-green-on-world-cp-day/ PRO TIP: You can download the official #MillionsofReasons World CP Day logo (and more resources) on their website. 😉 #CerebralPalsy #CerebralPalsyAwareness #whatCPlookslike #DisabilityAdvocate #Advocacy #FirstOfItsKind #RepresentationMatters 💚💚💚 [ID: World CP Day's official logo designed for my Go Green for CP campaign. A white background. At the top, it says #GoGreen4CP in bright green letters. Below there is a bright green lightbulb. Inside of the lightbulb there's the year 2019 in white, and below it, there are two white curved bars with three pointed indentations on top. The center is the same but filled in in green.]
    Leave a 💚 below if you agree! Find out how to Leave a 💚 below if you agree! Find out how to #WinAtLife at the link in my bio or go to https://nicoleluongo.com/how-to-win-at-life-like-an-olympian/ #NicoleLuongo #CerebralPalsy #SDRChangesLives #whatCPlookslike #GetInTheGame #MotivationMonday #Success #QuoteofTheWeek #QuotesAboutLife #QuotesToLiveBy #Winning [ID: A green background. In the center there’s a box with a black border around it. In the center of the box there is a white, round illuminated circle. Inside the box, superimposed on top of the illuminated circle, is a quote from Nicole in black text. It says: You can’t achieve anything if you’re on the sidelines of life. Get in the game! Nicole’s Instagram @whatcplookslike is below the text, in the center.]
    Life with #CerebralPalsy can be exhausting! We exp Life with #CerebralPalsy can be exhausting! We expend 5-7 times more energy doing daily tasks, so it’s no wonder we’re tired. It’s okay to take breaks. It’s healthy (for your body + mind) to take breaks. It’s necessary to take breaks. Taking breaks doesn’t mean you aren’t productive. REPEAT AFTER ME: Just because you take breaks doesn’t mean you’re broken. Click the link in my bio for some self-care tips. Or, go to https://nicoleluongo.com/cerebral-palsy-self-care-tips/ What does taking a break look like to you? 💚💚💚 #NicoleLuongo #whatCPlookslike #CerebralPalsyAwareness #Disabilities #SelfCare #SelfCareTips #WednesdayWisdom [ID: A green background. In the center there is a white, square pop up bubble with black text. At the top it says Reminder. Underneath it says: Just because you take breaks doesn’t mean your broken. There’s a vertical line under the text. Underneath, to the left, in blue letters, it says Close. There’s a vertical line. To the right, in blue letters, it says Got it. Nicole’s Instagram @whatcplookslike is below the bubble, in the center.]
    September is World Alzheimer's Month. The blog pos September is World Alzheimer's Month. The blog post (at the link in my bio) talks about what not to say to people with disabilities, especially those with Alzheimer’s disease. Let’s think before we speak. #AlzheimersDisease #CaregiverLife #Disabliities #CerebralPalsy #whatCPlookslike #ThinkBeforeYouSpeak #DontSayThat #WorldAlzheimersMonth #SFLA #Seattle [ID: A photo of Nicole and her mom from 1992. They're smiling at the camera, sitting at a table in restaurant.]
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