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#Endnf Reel by @childrenstumor - 🎥 Have you ever wondered: What is NF1? It's short for neurofibromatosis type 1, but what IS it? You're not alone - and we're here to help. In the Bi
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@childrenstumor
🎥 Have you ever wondered: What is NF1? It's short for neurofibromatosis type 1, but what IS it? You’re not alone — and we’re here to help. In the Big Questions about NF series, Kate Kelts, RN, BSN, breaks down key questions and concerns that NF patients and families ask most often. Missed the previous episodes? Click our link in bio to check out our YouTube channel! #EndNF
#Endnf Reel by @mckinnongalloway (verified account) - Thank you for taking the time to watch and share. 💙 💚 together we can #endnf 🤟 While i fight for myself, my passion is to fight for those who hav
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@mckinnongalloway
Thank you for taking the time to watch and share. 💙 💚 together we can #endnf 🤟 While i fight for myself, my passion is to fight for those who have lost their life along the way to honor heir memory and for the kids who are too young to speak for themselves. NF2 is a rare genetic disorder where tumors grow on any nerve throughout the body. And there is no cure. It’s extremely hard. But with your help. We can raise awareness that will ultimately lead to a cure!
#Endnf Reel by @manamiokochi - 綺麗な肌は今世では永遠に叶わない憧れ🫠 いいなぁ… #難病と共に生きる #美しく生きる #一歩踏み出す勇気 #本当の自分 #病に負けない #NF1 #ありのまま #挑戦 #堂々と #指定難病 #ENDNF #レックリングハウゼン病 #ガラス作家
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@manamiokochi
綺麗な肌は今世では永遠に叶わない憧れ🫠 いいなぁ… #難病と共に生きる #美しく生きる #一歩踏み出す勇気 #本当の自分 #病に負けない #NF1 #ありのまま #挑戦 #堂々と #指定難病 #ENDNF #レックリングハウゼン病 #ガラス作家
#Endnf Reel by @mommer_do_run (verified account) - Looks like we made it… This year has been one of my hardest most trying year as a mother, friend, wife and human. When my son was diagnosed with a
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@mommer_do_run
Looks like we made it… This year has been one of my hardest most trying year as a mother, friend, wife and human. When my son was diagnosed with a brain tumor needing urgent removal, I felt lost. Helpless. Hopeless. But it was through the strength of my children, husband and friends I realized I had no choose but to fight. And it was through my fight I realized how strong I truly was. Because I refused to give up. Running gave me the space to cope, reset, detach, cry, scream, and feel all the feels. Through faith in God, I saw my purpose. I saw my duty. And I come out of this year forged to strength; because I never gave up! #runnersofinstagram #runnermotivation #runningcommunity #motherrunner #braintumorawareness
#Endnf Reel by @lillypulitzer (verified account) - In celebration of a life that radiated joy, color, and courage, we're honored to introduce our newest print in partnership with @pennysflight. Inspir
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@lillypulitzer
In celebration of a life that radiated joy, color, and courage, we’re honored to introduce our newest print in partnership with @pennysflight. Inspired by the beautiful spirit of Penny Doerge, who lived with Neurofibromatosis (NF) since infancy, this pink and white toile is filled with sunshine, butterflies, and the optimism she carried through every moment. It’s a print that embodies Penny’s legacy and the Foundation’s mission to help others do the same: spread your wings, shine your light. Together, we hope to spark confidence, fund critical research, and continue lifting up those affected by NF and related disorders. Help us #ENDNF, and be a butterfly. 🦋 Tap the link in bio to learn more and shop the collection.
#Endnf Reel by @pennysflight - 🦋"Happiness, not in another place but this place… not for another hour, but this hour." - Walt Whitman 🦋 Penny never waited for "someday." She live
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@pennysflight
🦋”Happiness, not in another place but this place… not for another hour, but this hour.” – Walt Whitman 🦋 Penny never waited for “someday.” She lived each day like it was the special occasion. She didn’t need perfect weather or a big plan — just the people she loved, a moment to laugh, and her big-open heart. How often do we rush through our days, chasing the next thing, thinking joy lives somewhere ahead of us? Penny reminds us it’s here. Right now. In this minute. This week, pause. Look around. Live like Penny and let yourself sink fully into this present moment — because it’s the only one guaranteed. Celebrate this life. This hour. This gift. 🦋 #mondaymotiviation #famjam2025 #LiveLikePenny #PositivelyPenny #PennysFlight #SpreadYourWings #ShineYourLight #EndNF #NFResearch #PDAA
#Endnf Reel by @natalie.killmaster - A Christmas gift that actually means something. 🎁✨ The Natalie Collection from Mae Wearable Art donates a portion to the Children's Tumor Foundation
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@natalie.killmaster
A Christmas gift that actually means something. 🎁✨ The Natalie Collection from Mae Wearable Art donates a portion to the Children’s Tumor Foundation so you’re not just gifting jewelry, you’re gifting hope. #endnf #childrenstumorfoundation #ctf @maewearableart
#Endnf Reel by @joyforgeorgia - If keeping up with trends means I get to keep spreading awareness for her rare genetic disorder then put me in, coach. May is Neurofibromatosis Awar
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@joyforgeorgia
If keeping up with trends means I get to keep spreading awareness for her rare genetic disorder then put me in, coach. May is Neurofibromatosis Awareness Month. NF is a rare genetic disorder affecting 1 in 2000 people, yet it’s widely unheard of. It’s the *most common* rare disorder that affects all genders and races equally. NF causes tumors to form along nerves throughout the body, it is progressive and there is currently no cure. But you can help us change this by engaging with our content, and others who are spreading awareness for Neurofibromatosis💙 Have you heard of NF before? . . . . #nf1 #endnf #neurofibromatosis #makenfvisible #nf2 #rarediseaseawareness #raredisease #rarediseases #braintumor #braintumorawareness #braintumorssuck #raregeneticdisorder #gograyinmay
#Endnf Reel by @doergek (verified account) - Neurofibromatosis took our daughter Penny's life. But it did not take our mission. 🦋 I was supposed to be on Capitol Hill tomorrow and Tuesday advoc
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@doergek
Neurofibromatosis took our daughter Penny’s life. But it did not take our mission. 🦋 I was supposed to be on Capitol Hill tomorrow and Tuesday advocating alongside other NF families. Because of the snowstorm, I won’t be there in person- but the urgency doesn’t pause. Here’s the simple ask: Please support $25 million in funding for Fiscal Year 2027 for the Neurofibromatosis Research Program (NFRP), funded under the Congressionally Directed Medical Research Program (CDMRP). This program has already driven groundbreaking discoveries, advanced treatments, and supported clinical trials nationwide. Continued funding means continued progress- and hope- for families like ours. If you know a Congressman or Senator- especially here in New York- please reach out. Make the call. Send the email. Use your voice. We will find a cure. Together. 🇺🇸 @pennysflight @nfnetwork #Pennysflight #CureNF #NFStrong #TurningPainIntoPurpose #WingspanNotLifespan
#Endnf Reel by @nfxdetroit (verified account) - Organoids are lab-grown mini human organs that exist in a dish outside of the body. We are excited about the possibilities this tool provides for test
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@nfxdetroit
Organoids are lab-grown mini human organs that exist in a dish outside of the body. We are excited about the possibilities this tool provides for testing and drug discovery for #NF treatments. #nfawareness #nfawarenessmonth #endnf
#Endnf Reel by @wrappedbycarrie (verified account) - A very special wrap today in honor of @pennysflight, an organization dedicated to research for Neurofibromatosis, a condition that causes tumors to fo
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@wrappedbycarrie
A very special wrap today in honor of @pennysflight, an organization dedicated to research for Neurofibromatosis, a condition that causes tumors to form in the brain, spinal cord and nerves. This tragically took the life of my young cousin, as well as that of young Penny Doerge. When I saw the fundraising collab with @lillypulitzer, it was an immediate YES to making a purchase. The beautiful pink pattern on the cross-body bag and hat is quintessential Lilly. Looking forward to gifting the bag to a very special mom and I am selfishly keeping the cap. ☺️ Selected my most “LillyP-esque” paper and channeled my inner @staceygordondoesdesign and Cassie from @wirrwarrwraps to create this fun and vibrant wrap with a signature WirrWarrWraps messy bow. Would love for everyone to consider a purchase from the Penny’s Flight collection at Lilly Pulitzer (or direct donation) to help #ENDNF! 🦋
#Endnf Reel by @gilbertfamilyfoundation (verified account) - This May, during #NFAwarenessMonth, we honor the life and legacy of Nick Gilbert, whose positive outlook and determination continues to drive our miss
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@gilbertfamilyfoundation
This May, during #NFAwarenessMonth, we honor the life and legacy of Nick Gilbert, whose positive outlook and determination continues to drive our mission to accelerate a cure for NF1. Nick brought leaders like Dr. Ivan Baines to Detroit, where he now serves as COO of the forthcoming Nick Gilbert Neurofibromatosis Institute. And our vision was inspired by Nick: bring the brightest minds together, refuse to accept the status quo, and never give up. We're building on Nick's legacy by supporting a shared vision for a global hub for NF research - right here in our hometown. Nick showed us that impossible is just a starting point—and together, we're turning his dream of a cure into reality. #NFAwareness #NFAwarenessMonth #EndNF

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