CTF Colorado @ctfcolorado
The Childrens Tumor Foundation Colorado community. CTF helps to raise awareness and funds for research into a cure for all types of Neurofibromatosis (NF). facebook.com/nfcolorado Denver, CO Joined April 2016-
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Congress Agrees On $20M for NF Research! This continued fiscal commitment through the @CDMRP, with a $5M increase from previous years, recognizes NF voices are being heard! Thanks to all of you, we're advancing scientific discoveries and improving lives for NF patients. #EndNF
Congratulations @Rockies Ian Desmond on your 2020 Roberto Clemente Award Nomination🎉
🔊 A special message from Ian Desmond: 𝐼𝓂𝒶𝑔𝒾𝓃𝑒 𝒽𝑜𝓌 𝒷𝑒𝒶𝓊𝓉𝒾𝒻𝓊𝓁 𝓉𝒽𝑒 𝓌𝑜𝓇𝓁𝒹 𝒸𝑜𝓊𝓁𝒹 𝒷𝑒 𝒾𝒻 𝒾𝓉 𝓌𝒶𝓈 𝓈𝑒𝑒𝓃 𝓉𝒽𝓇𝑜𝓊𝑔𝒽 𝒶 𝒸𝒽𝒾𝓁𝒹’𝓈 𝑒𝓎𝑒𝓈.
Great news! Legislation Passed by House Subcommittee Includes $20 Million for NF Research! Your voice is being heard and the message is clear: NF research is important, and it needs more funding. Read more: facebook.com/childrenstumor… #EndNF
Ian Desmond’s statement about his decision to sit out this season is very thoughtful and layered. This is just part of it: instagram.com/p/CCCp7aSptTr/…
You may not agree with #Rockies #IanDesmond sitting out or you may opt for the cynical comment, but Desmond has always been a man of strong convictions and someone who will “walk the walk.”
You may not agree with #Rockies #IanDesmond sitting out or you may opt for the cynical comment, but Desmond has always been a man of strong convictions and someone who will “walk the walk.”
Colorado Rockies OF Ian Desmond shared a powerful message with the reasons behind him opting out of playing baseball this season. es.pn/31rUqh8
"Home is where I need to be right now." Read Ian Desmond's full message to fans: instagram.com/p/CCCp7aSptTr/
The Rockies’ Ian Desmond has opted out of the 2020 season, but that feels secondary to a heartfelt, incisive Instagram post about his place in the world and baseball’s as well. The whole post is here: instagram.com/p/CCCp7aSptTr/…. But the part I’ve attached is important and spot-on.
Ian Desmond opts out, with an essay well worth reading. instagram.com/p/CCCp7aSptTr/…
I’ve covered a lot of athletes in a lot of sports. Few were as direct as Ian Desmond. He pulled no punches. Ever. Powerful statement. instagram.com/p/CCCp7aSptTr/…
Just go read the whole Ian Desmond post if you haven’t yet. Don’t flip thru it quickly either, read every damn word. instagram.com/p/CCCp7aSptTr/…
What Ian Desmond shared tonight about his decision to opt out of this MLB season is a powerful explanation of everything happening right now and how he's trying to cope: instagram.com/p/CCCp7aSptTr/…
Instead, he will stay home with his wife, Chelsey, who is pregnant with the couple's fifth child. He will also help the Sarasota Little League, where he got his chance to live the happiness and heartache of baseball, and make sure children that aren't getting the opportunity do.
#Rockies Ian Desmond, at the end of a long, very personal Instagram post, says he will not play major league baseball this season. dpo.st/38dlZfy
The @Rockies Ian Desmond going to skip the shortened season. Much longer version of this in Insta
Ian Desmond will not be playing the 2020 season. His reasons are eye opening, thought provoking and worth a read on his Instagram page instagram.com/p/CCCp7aSptTr/… #rockies #mlb
As many as 90% of children and adults with NF1 have learning challenges, and may need some form of learning assistance.#EndNF#NF1
Like, share, comment, tag, and shout it from the rooftops: TODAY, MAY 17, IS WORLD NF AWARENESS DAY! Today is about spreading awareness for a genetic disorder that affects 2.5 million people around the world. Wear your blue & green and show your passion in your fashion! #ENDNF
NF1 is caused by a change, or mutation, in a gene located on chromosome 17. #EndNF #NFAwarenessDay #May17

Children's Tumor Fdn @ChildrensTumor
7K Followers 810 Following The Children's Tumor Foundation is the drug discovery engine pioneering more solutions, better options, faster for all NF patients.
Neurofibromatosis Net... @nfnetwork
4K Followers 143 Following Neurofibromatosis (NF) Network is the national non-profit serving individuals affected by neurofibromatosis. Leading NF Advocacy, Building NF Community.
Shawn Drotar @sdrotar
5K Followers 2K Following "Mile High Sports Today" host at @milehighsports. @CUBuffsFootball press-box announcer. @PHSMustangs HoF. Formerly @ESPN, @USAToday, @SiriusXM & more. 🇺🇦
Kelly Carpenter @Hockey_NF_Mom
691 Followers 1K Following Wife, Mom of 3 boys (one with NF), Meteorologist
CandyAmanda @PandaMandda
439 Followers 3K Following Living that Colorado life Cancer sign ♋ Blonde cashier life💫 Black coffee and Puppy love💗
casset @casset116270
48 Followers 4K Following
Sidney Glasshoff @Sidneysnfstory
4 Followers 44 Following
Nusteth @nusteth654
74 Followers 7K Following
Newheski @newheski92682
60 Followers 5K Following
Sasadith @Sasadith161298
26 Followers 2K Following
NF1 Dad @nf1_dad
15 Followers 100 Following
Zhao Ding @SZNFCC
56 Followers 232 Following Father of NF2 rare disease patient; raise awareness and funding for NF2 cure; Volunteer at China Pao Pao Home Neurofibromatosis Care Center
Chuck Dolish🇺🇸�... @ChuckDolish
219 Followers 944 Following Read only account for now, please follow @LordDolish for interactions thanks!
NF1 Project @Nf1Project
206 Followers 390 Following An international research project aimed at improving understanding of how genetics affects the number of skin neurofibromas a person with NF1 may develop.
PowerSLP @PowerCCCSLP
112 Followers 725 Following Welcome to my journal! Speech-Language Pathologist; Family Trainer; Behavior Interventionist. #EndNF #autismawareness
Jeff.liu 刘育文 @jeffyuwen246
42 Followers 364 Following Internataional Business Manager; Oversea Market Development;Multimedia Speaker Business
Elizabeth @Elizabe666888
16 Followers 1K Following
Taylor Sundby, MD �... @rtsundby
516 Followers 801 Following 🎗️Ped-onc |#NF1, #cancerpredisposition, #raretumors, #EarlyDetection, #cfDNA & biomarkers|Proud dad|Opinions=own|#Nemours|PI@CancerInterception&TumorEvolution
NF Bot @NFBot2
780 Followers 2K Following Neurofibromatosis\Schwannomatosis Bot-Looking to spread new publications, news, & social media (reddit\twitter). Welcome comments\suggestions to @DrezBoston
Ai4 - Artificial Inte... @Ai4Conferences
10K Followers 6K Following North America's Largest Artificial Intelligence Industry Event 🤖 Join us at Ai4 2026, August 4-6 in Las Vegas.
Corinne Bobrowich @cthombob
12 Followers 31 Following
Andrés Lessing ⭐�... @DrezBoston
379 Followers 1K Following 🇦🇷🇺🇲 Trying to navigate the craziness. Neurofibromatosis/Schwanomatosis advocate & Patient Representative. Sarcoma Survivor.
LYNDON DEMERS @lyndondemers
146 Followers 3K Following DISPATCHER with CAA Co President & Treasurer with Manitoba Neurofibromatosis Support Group Founder of Lyndon’sCribbage Group
YL @tan_yl
322 Followers 286 Following Lego-focused Twitter. Veteran of fight against genetic disorder called NF2. Journo, AFOL, @NF2BioSolutions rep. All opinions stated here are my own.
Margaret Votes @margaret3515
2K Followers 3K Following #BLM *Project 2025*is fascist LBGTQ+ Ally #Vote keepmigrantsdeportracists #ClimateCrisis #Resist 🚫DMs #FBR Be kind & generous 💙
Augusto Ramirez @Augusto25605383
480 Followers 4K Following Centro clinico y deportivo CEPSER (f) Lic.Augusto Sierra Ramirez https://t.co/tYzyz0Z5Vn.
Darinka @Darinka_the
42 Followers 355 Following
JASON BUTZ @JASONBUTZ6
59 Followers 1K Following CINCINNATI REDS WASHINGTON FOOTBALL TEAM BOSTON RED SOX NBC 26 WGBA BLINDSPOT VOCAL LESSONS RADICAL BOWLING 772 SCRATCH SERIES YO BUCHA YOGURT
Jamal shah Mohmand @Jamalshahmmd
25 Followers 1K Following
vanessa jane croft @nessajanecroft
920 Followers 2K Following Mum of 4 who has shared an amazing, inspiring journey with my daughter Katie Newell with her courageous battle with Neurofibromatosis .
azad fire doors @AzadDoors
5 Followers 99 Following
Scott "Chicken Wings ... @TheWingsExpert
551 Followers 1K Following Chicken Wings Expert, Annoyingly Proud Dad, #Neurofibromatosis #ChickenWingsExpert #GoHabsGo President, Founder of "The Society of Chicken Wings Experts"
Poppy @Awkward_Popcorn
71 Followers 267 Following Photographer, love documenting the human condition. Met Tom Ellis on 27/07/19 😈❤ work with people and new films,
Alex Leisenring @videomaster703
2K Followers 4K Following 2 time Cancer Survivor 26 years old Pittsburgh PA Born and Raised Neurofibromatosis Taken Dani 4-16-2024
ibrahim @ibrahimtolun
75 Followers 828 Following
NF Forward @NFForward
359 Followers 328 Following We are a non-profit funding neurofibromatosis (NF) research with audacious, high-reaching goals that will bring us closer to a cure for NF.
And @AndieSue2U
115 Followers 1K Following
Children's Cancer Cau... @childrenscause
6K Followers 5K Following Our vision is a long, healthy life for every child with cancer. #childhoodcancer #nonprofit
NF Israel @nf_israel
13 Followers 25 Following העמותה הישראלית לנוירופיברומטוזיס פועלת לקדם טיפול ומחקרים בישראל לכל האנשים החיים עם NF בישראל
OUR NF Story Jennifer... @ournfstory
34 Followers 69 Following Jennifer Townsend Mom of 4 / 2 has NF / Olivia has brain tumor optic glioma / Elizabeth has NF /Twyla non NF still has some special needs /Special needs mom
XrayJay78 @XrayJay78
7 Followers 182 Following If I say it, it must be so! Just ask my wife. Really. XBL/Game Center ID: Docp78
Margaret Reynolds @ma... @margare60211437
34 Followers 190 Following NF2 patient. Maven of funk mutation. Biologist. Rare disorder advocate Dog lover. Married. @NF2BioSolutions volunteer. Tweets are my own.
Children's Tumor Fdn @ChildrensTumor
7K Followers 810 Following The Children's Tumor Foundation is the drug discovery engine pioneering more solutions, better options, faster for all NF patients.
Neurofibromatosis Net... @nfnetwork
4K Followers 143 Following Neurofibromatosis (NF) Network is the national non-profit serving individuals affected by neurofibromatosis. Leading NF Advocacy, Building NF Community.
Shawn Drotar @sdrotar
5K Followers 2K Following "Mile High Sports Today" host at @milehighsports. @CUBuffsFootball press-box announcer. @PHSMustangs HoF. Formerly @ESPN, @USAToday, @SiriusXM & more. 🇺🇦
Vic Lombardi @VicLombardi
171K Followers 519 Following @AltitudeTV and @AltitudeSR 92.5 in Denver. Proud Domer. Fluent in 11 sports. EasyE is my pops. #NorthSide
Kelly Carpenter @Hockey_NF_Mom
691 Followers 1K Following Wife, Mom of 3 boys (one with NF), Meteorologist
Patrick Saunders @psaundersdp
22K Followers 2K Following Rockies beat writer @denverpost. Nancy's husband, golden retriever lover, Springsteen fanatic. Colorado native. Email: [email protected]
Kyle Clark @KyleClark
230K Followers 9K Following Dad, husband, journalist. Proud of #HeyNext viewers' $15M in Word of Thanks microgiving. @NextOn9NEWS, 9NEWS 9/10pm. Send tips via Signal: kyleclark.02
Corinne Bobrowich @cthombob
12 Followers 31 Following
YL @tan_yl
323 Followers 286 Following Lego-focused Twitter. Veteran of fight against genetic disorder called NF2. Journo, AFOL, @NF2BioSolutions rep. All opinions stated here are my own.
Margaret Votes @margaret3515
2K Followers 3K Following #BLM *Project 2025*is fascist LBGTQ+ Ally #Vote keepmigrantsdeportracists #ClimateCrisis #Resist 🚫DMs #FBR Be kind & generous 💙
vanessa jane croft @nessajanecroft
920 Followers 2K Following Mum of 4 who has shared an amazing, inspiring journey with my daughter Katie Newell with her courageous battle with Neurofibromatosis .
mlynn @mdlynn
26 Followers 153 Following
Danica McKellar @danicamckellar
158K Followers 394 Following #GroundedInLove premieres Sat Sept 27th 9pmET on @gafamilytv! 🎬🤗 Preorder 📚 *I Love You 100!* 📚 Love God & EVERYONE ❤️
DrTodd @DrTodd111
208 Followers 546 Following EmergencyMedicinePhysician.Exploring a synergy of healthcare and blockchain technology. CryptoEducated. Co-founder Automated Clinical Solutions LLC
NF Forward @NFForward
359 Followers 328 Following We are a non-profit funding neurofibromatosis (NF) research with audacious, high-reaching goals that will bring us closer to a cure for NF.
Alex Leisenring @videomaster703
2K Followers 4K Following 2 time Cancer Survivor 26 years old Pittsburgh PA Born and Raised Neurofibromatosis Taken Dani 4-16-2024
NF Israel @nf_israel
13 Followers 25 Following העמותה הישראלית לנוירופיברומטוזיס פועלת לקדם טיפול ומחקרים בישראל לכל האנשים החיים עם NF בישראל
OUR NF Story Jennifer... @ournfstory
34 Followers 69 Following Jennifer Townsend Mom of 4 / 2 has NF / Olivia has brain tumor optic glioma / Elizabeth has NF /Twyla non NF still has some special needs /Special needs mom
Esther🌺🇿🇦 @im_queenesther
4K Followers 4K Following Blogger | The mining girl 👷♀️🔨🪨🪨🪨 I am @im_queenestherr on Instagram ( reality Tv is my guilt pleasure)
Super Serious 616 Pod... @SuperSerious616
2K Followers 4K Following The Super Serious 616 Podcast explores Marvel #Comicbooks as if it were happening now. Hosts: @ednever & @cmjkealy
National Organization... @RareDiseases
40K Followers 3K Following #NORD has been the voice of the U.S. #RareDisease community for 40+ years strong. Official U.S. sponsor of #RareDiseaseDay. On Bluesky at @ https://t.co/D7PIT4k0Py
Margaret Reynolds @ma... @margare60211437
34 Followers 190 Following NF2 patient. Maven of funk mutation. Biologist. Rare disorder advocate Dog lover. Married. @NF2BioSolutions volunteer. Tweets are my own.
Zellweger UK @ZellwegerUk
732 Followers 3K Following Supporting families with children dealing with the life limiting condition Zellweger Syndrome. With the aim to fund much needed research.
SVAI @SVAIresearch
2K Followers 2K Following SVAI is a non-profit organizing AI/ML lectures and patient focused medical research cases. Our patient research cases has moved to @Research2People
Seth Sinclair @SinclairSeth
733 Followers 3K Following
Ryan Fitzgerald @rynofitz
56 Followers 533 Following Iraq and Afghanistan Veteran, Proud American 🇺🇸🇺🇸🇺🇸🇺🇸🇺🇸🇺🇸
Angel Lopez @angelLo79668394
67 Followers 174 Following
Notskiguy @Notskiguy
925 Followers 113 Following May have some insider baseball information - call it educated ignorance. Political opinions are my own.
Jeff Lloyd 🦣 @jefflloyd86
146 Followers 584 Following Husband, father, tax accountant, Latter-day Saint, lover of sports. #TakeNote #TusksUp My sons are my heroes. #EndNF #MoreThan4 #GoGold 🎗️#AutismAwareness
Chris Cordova😎 @CCordova303
204 Followers 655 Following Husband, Father, & Full time Revolutionary ✊✊✊⚾️⚾️🏒🏒🏒🏀🏀🏈🎱🎳🚴♂️
Thomas Harding @harding_at_mlb
23K Followers 10K Following I've covered the Rockies since 2000, and for https://t.co/teGWLJcsd6 since 2002.
bradreason.bsky.socia... @BradReason
125K Followers 111K Following Fuck Elon Musk. https://t.co/xoaodhvh3W
AllStripes @_allstripes
3K Followers 1K Following Our mission is to unlock new treatments for people affected by rare disease.🚀
Coco&TheDirector @CATDCLT
647 Followers 115 Following Your Neighborhood coffeehouse with tricked out seating and a co-lab for local makers and community collaboration. 📍 Trade & Tryon
Ronnie Talbott @RonnieTalbott
12K Followers 2K Following Ronnie from CBS Big Brother 11! Video Game Nerd, Forensicator, Husband, Father #Gamer #WoW #Warcraft #ACNH #BB22 #BB11 #Gaming #Streamer
Seventeen22 Foundatio... @Seventeen22fdn
42 Followers 130 Following Nonprofit focused on providing financial assistance for neurofibromatosis families.
douglas eugene duncil @DuncilEugene
5 Followers 78 Following I am a father, a worker, a student, a lover of Baseball. I try to put others before myself, I do have a problem when it comes to watching and buying movies
Rockies Radio Network @RockiesRadio
462 Followers 125 Following Rockies Radio KOA 850 AM and 94.1 FM, the home of the Colorado Rockies!
Jack Corrigan @jackcorrigan2
3K Followers 193 Following Colorado Rockies Play by Play on 850 KOA, Cancer Fighter, Cornell Kid Productions, Author, Asst. FB Coach @Regis Jesuit
Jerry Schemmel @jschemmel6
4K Followers 169 Following Serving Jesus Christ, as a Broadcaster, Author, Speaker & Ultra Cyclist
Andy 👋🏻 F - Can... @ChefAndrewMills
3K Followers 5K Following i have terminal Cancer Stage 4 this time brainstem . I Had 23 Surgery’s ,I follow back!!independent!
Charity Today @Charity_Today
29K Followers 8K Following 🇬🇧 The UK’s leading #charity news membership publication. Share your stories via email: [email protected]. Proud supporters of @UKCharityWeek.
Linfa Neurofibromatos... @Ass_linfa
227 Followers 563 Following LINFA vuole trovare una cura per le neurofibromatosi (NF), migliorare la qualità di vita dei pazienti, promuovere la conoscenza di questa sindrome genetica rara
London Life @LdnIdeas
8K Followers 8K Following entertainment, the arts and general ideas about London. Powered by @yourfacehereuk
Lindsay @rev1109
64 Followers 727 Following
Jesus G Aranguena @AranguenaJGA
261 Followers 807 Following Raising awareness about #noonansyndrome and #neurofibromatosis #endNF . Father of daughter affected by both. No al cierre de CEE 💚💚💚
Abraham Alarcón @abealarcon
2K Followers 4K Following Educator, catechist, & life-long learner. he/him/his Opinions are my own. #prayer #bike #dance #music
ASSO KOKCINELO @Kokcinelo
476 Followers 855 Following Kokcinelo a pour but de lutter contre la neurofibromatose de type 1 (NF1) (maladie génétique rare) et les discriminations induites par la maladie.
Margaret @TweedSoars
110 Followers 266 Following Have Nerofibromatosis also known as NF1 is more common than Duchenne Muscular Dystrophy, Huntingdons Disease and Cystic Fibrosis combined.
Ass. Catalana Neurofi... @acnefi_org
467 Followers 72 Following L'Associació Catalana de les Neurofibromatosis informa i recolza als afectats i familiars d'aquesta malaltia. #Neurofibromatosi #EndNF #NF1 #NF2