Fragile X Awareness @fragilexsyndrom
Spreading awareness of Fragile X Syndrome, FXTAS, FXPOI fragilexawareness.com Joined June 2009-
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What are Federal Budgets and Why They Matter paper.li/fragilexsyndro…
Beneath the Surface of Fragile X Syndrome: Study Sheds Light on What’s Happening in Nerve Cells urmc.rochester.edu/news/story/ben… #fragilex
Leading Research on Intellectual and Developmental Disabilities nichd.nih.gov/newsroom/news/… by @NICHD_NIH #fragilex
What Does a New Congress Mean for Advocacy paper.li/fragilexsyndro…
Fragile X Gray Zone Alleles Are Associated With Signs of Parkinsonism and Earlier Death onlinelibrary.wiley.com/doi/10.1002/md… #fragilex
Survey: Share Your Experience With Telehealth and Services during COVID paper.li/fragilexsyndro… by @NFXFoundation
Fragile X Research Grants Application • Fragile X Research - FRAXA Research Foundation paper.li/fragilexsyndro… by @FRAXAresearch #fragilex
Fragile X Syndrome: Where are we today? paper.li/fragilexsyndro… #fragilex
The horse will sing paper.li/fragilexsyndro… #hope
Fragile X Advocacy in 2021 paper.li/fragilexsyndro…
New drug moves closer to becoming first treatment for Fragile X Syndrome medicalxpress.com/news/2020-12-d… #fragilex
Towards Understanding the Role of FMRP in Human Brain Development Using Brain Organoids paper.li/fragilexsyndro… #fragilex
FORWARD Explained: Past, Present, and Future paper.li/fragilexsyndro… by @NFXFoundation
PiP Autumn and Winter Events eventbrite.co.uk/e/pip-autumn-a… #givingtuesday
Science Update: Instruction method for parents improves language function in youth with Fragile X syndrome nichd.nih.gov/newsroom/news/… by @NICHD_NIH #nih
The placebo effect has been a particular pitfall in #FragileX #clinicaltrials. FRAXA is working with #pharmaceutical and #biotech partners to develop and test new clinical trial designs that include objective measures to evaluate treatments. fraxa.org/overcoming-the…
📕🥳Just Published! New book #FragileX Syndrome and Premutation Disorders: New Developments and Treatments edited by Randi J Hagerman and Paul J Hagerman. Download a free chapter here👉 bit.ly/38GDCqf @NFXFoundation, @FRAXAresearch, @FragileXAus, @UCDMINDINST
With all of the new restrictions, returns to virtual schooling, etc. we thought we would remind everyone of our COVID-19 resources page 25+ articles and videos to help you. Check it out and use it at hubs.ly/H0Bgb3_0.
Arbaclofen Returns After 7 Years! paper.li/fragilexsyndro… #fragilex
Fish give insight on sound sensitivity in autism sciencedaily.com/releases/2020/… #brain
Fragile X Society, UK @fragilexuk
3K Followers 1K Following Fragile X Syndrome is the most common inherited cause of learning disability. We support & empower individuals, families & professionals.
FRAXA Research @FRAXAresearch
2K Followers 867 Following Working to find effective treatments & a cure for #FragileX, the most common inherited cause of intellectual disabilities and autism. Facebook: fraxaresearch
Sarah🪻 @sarahbobbeal
436 Followers 72 Following Sharing everyday life with Fragile X Syndrome🙅volunteer⭐cats🐈true crime🕵️space🚀makeup💄tv series📺 charity shops👕colourful outfits🌸
Stu and Matt @stuandmattmcd
2K Followers 2K Following 25 y/o twins raising awareness of Fragile X Syndrome. We work, support JTs & play rugby for Borders/Scottish Clan/Scottish. Dad helps us tweet as we can’t read.
Edel Harris OBE (She/.. @Edelharris
5K Followers 4K Following I use the Twitter MUTE button when required!
Steve Harris🐺🦞 .. @SteveJHarris
2K Followers 2K Following Sussex since 64; Wolves 🐺 since ‘65; Packers since ‘67; Liberal since ‘70; horses since ‘89; Fragile X Syndrome since ‘01; retired since ‘17; pro foreigners
UNSW 3DN @3DN_UNSW
1K Followers 1K Following UNSW Department of Developmental Disability Neuropsychiatry (3DN). Working to improve mental health policy & practice for people with an intellectual disability
Rare Disease Day @rarediseaseday
44K Followers 3K Following 29 February 2024 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay
Fragile X Australia @FragileXAus
1K Followers 512 Following Connections, information, support & advocacy for the Fragile X community - those living with Fragile X syndrome or Fragile X Premutation-Associated Conditions.
Sue Fletcher-Watson @SueReviews
13K Followers 4K Following left twitter (except occasional DM checking) Follow @smrcresearch and / or @supertroopedin instead. And find me on BlueSky @suereviews.bsky.social
Shane @shane47164
5 Followers 21 Following
Phillip Bishop @TheRealBishop14
14 Followers 34 Following
Contact @contactfamilies
35K Followers 7K Following We are Contact, the charity for families with disabled children. We support families, bring families together and help families take action for others.
Sab_Alam @urmialam122
26 Followers 500 Following #PhD Candidate #Integrative Biology #OKState #works on Fragile X Syndrome #Ionome #Gut_Microbiome
readyandsingletomingl.. @dilfandasian
16 Followers 2K Following
Nell @NellNell1593010
1 Followers 36 Following
Matt Chastain @chastain44
2 Followers 4 Following
secondaryspedteacher @secondarys81459
28 Followers 67 Following On the hunt for Secondary Special Educator Resources and Literacy Practices
JP @JP_Nifty
171 Followers 3K Following Mechanical engineer by profession. Aspiring Delta one trader, Trend following using reactive technical analysis.
Canadian Rare Disease.. @CanadianRDN
227 Followers 595 Following Pan-Canadian network uniting clinical, scientific and patient experts to improve the health and well-being of individuals affected by rare diseases.
Jenn Cremins @CreminsLab
4K Followers 2K Following Laboratory for chromatin and spatial neurobiology. Understanding how synapses and the nucleus communicate in the developing and diseased mammalian brain.
David Wellens @DavidWellens07
83 Followers 345 Following
Kira woodgate @Misskiraa87
80 Followers 215 Following 3rd year student speech & language therapist 🥰 📚 💬 @SLTHuddsUni 💕family 💕Travel 💕New challenges
Tiago Castelo @castelo_tiago
119 Followers 178 Following
Beejal Shah @BShah88
1 Followers 35 Following
carebearbrite29 @carebearbrite29
493 Followers 2K Following Don't let the smooth taste fool ya....I'm from the streets
Lizzienencinitas @Lizzienencinit1
44 Followers 293 Following Molecular diagnostics consultant. Lover of knowledge and growth. Views are my own.
아오 @piececal
0 Followers 4 Following
Kirsten Nicole KR @KirstenNic55293
2 Followers 50 Following
SnLgames @sdtaylor926
9 Followers 45 Following Let's play, laugh, and win together! 🎲 Join our live games night 🎯on tiktok
Anastasia Fetisova @phynefetisova
6 Followers 22 Following
Bobby Stevens @thebobbystevens
386 Followers 1K Following Football, Wrestling, Hockey, MMA, Personal Liberty and Comedy fan who’s just trying to find a way to enjoy life and respectfully understand others opinions.
Alicia Navarro Astiga.. @aliciana873
48 Followers 364 Following Ni de izquierdas ni de derechas pero hoy más que nunca debemos estar unidos para sobrevivir y sobrevenir lo que acontece 🇪🇸
Kirsty Mitchell @kirstywhirsty
73 Followers 679 Following
Michelle lindahl🌈�.. @Michellelindh3
209 Followers 2K Following Dog & Cat Lover, Retired RN, Veteran USAF, Mainer, Now Lives in Fl, Democrat, Pro-Choice
Jaa200420 @jaa200420
161 Followers 488 Following
Paco @Jujupaco27Paco
12 Followers 53 Following
miso @misobednarik
73 Followers 446 Following There he goes. One of God's own prototypes. A high-powered mutant of some kind never even considered for mass production. Too weird to live and too rare to die.
Hannah Scott @HannahM_Scott20
1K Followers 4K Following Research assistant and PhD candidate @CSI_KCL Paediatric Palliative Care | Pronouns: She/They | Disabled 🩼 & LGBTQ+ 🏳️🌈 | Views my own.
LivJoy Foundation @LivJoyFdn
7 Followers 40 Following LivJoy Foundation - supporting Females with Fragile X #fragilex
helen samuel @hally_helen
251 Followers 4K Following integrative nutrition health coach & registered nurse,speech therapist.
Julia @J37801737
0 Followers 5 Following
Teresa_NF @TeresaNF1
831 Followers 2K Following Mi hijo Rafael es el motor de mi vida. Defensora de las Personas con Discapacidad de la ciudad de València.
Carly Moser @carlymoserlawn
5 Followers 22 Following
Caroline Parry @Caroline_Parry
407 Followers 699 Following London-based freelance journalist, music snob, TV addict and would-be gourmand.
Kelly Simpson Peters @mrspeters504
316 Followers 2K Following Former K-5 teacher, lifelong learner, book lover, mother x 2, CSU, Chico alumni, favorite quote: “Follow your arrow wherever it points.” K.M. ⬇️↗️↘️➡️
Ramel Paredes @ParedesRamel
15 Followers 264 Following
Charlie J @wotacharlie
125 Followers 2K Following
The Rare Brothers @TheRareBrothers
11 Followers 265 Following Rarely behaved, always cute. #RareDisease doesn’t define our life, but it is a part of our story.
Dr. Syed A Khalid @PerioPatriot
898 Followers 4K Following Proud Husband, Father, Patriot & Periodontist. God, 2A, StrongBorders, EndTrafficking, BackTheBlue , Support Vets, Pro-Life, Liberty, Freedom, & Justice4All!
Laura Friedman, PhD @DrLauraFriedman
9 Followers 48 Following @UofSC postdoc, @UWMadison alum #SLP researcher studying neurodevelopmental disabilities and aging
Heather Lynam @lynamland
55 Followers 464 Following Wife, mother of two, special educator in Ankeny Schools, baseball loving ginger
jayne and robert @jdcam442
207 Followers 2K Following
Rachel @Rachel_the_Car
1K Followers 1K Following Cartoonist A Proverbs 31 woman: except instead of linen garments and sashes it's cartoons and comics! https://t.co/ruJ3ArCNlh
Fragile X Society, UK @fragilexuk
3K Followers 1K Following Fragile X Syndrome is the most common inherited cause of learning disability. We support & empower individuals, families & professionals.
FRAXA Research @FRAXAresearch
2K Followers 867 Following Working to find effective treatments & a cure for #FragileX, the most common inherited cause of intellectual disabilities and autism. Facebook: fraxaresearch
Sarah🪻 @sarahbobbeal
436 Followers 72 Following Sharing everyday life with Fragile X Syndrome🙅volunteer⭐cats🐈true crime🕵️space🚀makeup💄tv series📺 charity shops👕colourful outfits🌸
Stu and Matt @stuandmattmcd
2K Followers 2K Following 25 y/o twins raising awareness of Fragile X Syndrome. We work, support JTs & play rugby for Borders/Scottish Clan/Scottish. Dad helps us tweet as we can’t read.
Steve Harris🐺🦞 .. @SteveJHarris
2K Followers 2K Following Sussex since 64; Wolves 🐺 since ‘65; Packers since ‘67; Liberal since ‘70; horses since ‘89; Fragile X Syndrome since ‘01; retired since ‘17; pro foreigners
Fragile X Australia @FragileXAus
1K Followers 512 Following Connections, information, support & advocacy for the Fragile X community - those living with Fragile X syndrome or Fragile X Premutation-Associated Conditions.
Ellen Pitcher @pitcher_ellen
81 Followers 78 Following @Mizzou Alum. Passionate about #fundraising and teaching others the joy of giving. Tweets = mine. RTs ≠ endorsement.
ivan SG @ivansimon73
34 Followers 135 Following Husband & proud dad of two boys including one with fragile x syndrome. Pharmacist reseach in how integrative medicine could help in #FragileX
Fragile X Resource Ce.. @FragileXMO
23 Followers 18 Following The Fragile X Resource Center of Missouri unites the local community to enrich lives through education, awareness, research and support for Fragile X Syndrome.
Laura Devonport @lcdevonport
67 Followers 166 Following Mummy to amazing son and daughter with Fragile X ❤
Fragile X Syndrome @1million4FXS
30 Followers 27 Following
Nyleta McRae @nyleta9
2 Followers 18 Following
Centrelink @Centrelink
32K Followers 33 Following This account is now closed. Stay up to date at @ServicesGovAU and @myGovAU
Kim Jeffryes @boobywoman
328 Followers 656 Following Dance with all ur heart and both ur soles! Fraggle family 💖
Fragile Xproject @fragilexipad
972 Followers 2K Following a dream project about getting iPads to Fragile X patients
Amy Watkins @awatkins24
253 Followers 394 Following I'm a mom to a son with Fragile X Syndrome. He is the greatest gift I've been given in this world. My husband & I team together raising awareness and research $
LA Fragile X Assoc @CentralLAFX
140 Followers 111 Following We are the Central Louisiana Fragile X Association, representing Fragile X families in Louisiana.
SocialPilot @socialpilot_co
71K Followers 4K Following SocialPilot is a powerful social media suite for agencies, SMBs, & multi-location brands. Streamlined scheduling, powerful analytics & easy collaboration.
Brody, Me & GDD (Laur.. @LauraRutherford
2K Followers 2K Following Over-thinker. PAMIS #ChangingPlaces Campaign Coordinator. Passionate about access & inclusion. My boy is the reason that #TescoJuniorNappies were created.
PostPlanner @PostPlanner
48K Followers 19K Following Post the BEST content in your industry — in minutes per month. Schedule posts to X, Instagram, Facebook, Google Biz, LinkedIn, Pinterest, TikTok and YouTube.
Commun.it @commun_it
400K Followers 405K Following https://t.co/9sSrmzs44h - We help you 🚀 Grow on Twitter - It's Magical & Free!
Lara Lovett @4boysandilovett
65 Followers 236 Following Mom to 4 precious boys, litigator, coffee and book lover, food maker, Fragile X champion. Devoted. Busy. Exhausted. Fulfilled.
BizSugar @bizsugar
25K Followers 4K Following The coolest small business news is shared on http://t.co/ty2H0GGl, the small business social media site. Sweet!
Fragile X HK @FragileXHK
98 Followers 69 Following We're a non-profit dedicated to fragile X support and advocacy in HK. We aim to improve the lives of those touched by fragile X and to raise awareness about FX.
catherine krupinski @ckrupinski
298 Followers 480 Following Proud Mum to three children including twin boys with Fragile X syndrome, retired teacher, loves food, wine, reading & walking the dog.
1Cat_Woman @1Cat_Woman
208 Followers 962 Following Mom of 4 boys! 2of my kids have Fragile-X Syndrome, the leading cause of inherited Autisim. If you know someone with Autisim, suggest testing for Fragile-X!!
GSNV @gsnv_info
745 Followers 2K Following The GSNV is an active organisation committed to promoting the interests and well-being of people affected by genetic, undiagnosed and rare conditions.
Sonic Learning @sonic_learning
4K Followers 1K Following Sonic Learning is a leading provider of neuroscience programs. Our team of health and education professionals help you achieve your optimum learning potential.
SpecialNeedsAdvocacy @oneworldorg
148 Followers 316 Following One World Organization Inc. is raising money to build a group home for adults with special needs. My brother/hero has FragX. https://t.co/6dl6WJQx7e
TXFX @fragilex2011
43 Followers 15 Following North Central Texas Fragile X Community Support Network
Central CA Fragile X @CentralCaFX
57 Followers 73 Following
UCDavisMINDInstitute @UCDMINDINST
4K Followers 588 Following The UC Davis MIND Institute is an international research center, committed to scientific discovery involving neurodevelopmental disabilities.
GreaterChiFX @GreaterChiFX
85 Followers 36 Following A Member of the Community Support Network of the National Fragile X Foundation!
See The Possibilities @STPNSW
3K Followers 615 Following We aim to engage with employers to help them understand the value that people with disability bring to business. #SeeThePossibilities
Faydra Stratton @faydrastratton
488 Followers 641 Following Author of YA contemporary DEVIL SPRINGS ('20), DENALI SUMMER coming Fall 2023. #teacherlife #fragilexawareness Always up for karaoke or kayaking.
4CareGivers @GivingBackCare
534 Followers 1K Following GivingCareBack a nonprofit concept providing rejuvenating interventions including yoga, art expression, health education & activities for care givers.
Fragiele X Nederland @fragielex
137 Followers 4 Following Fragiele X Vereniging Nederland staat voor de belangen van mensen met Fragiele X en aanverwante aandoeningen (FXTAS, FXPOI) en hun omgeving.
Fraxsocal @Fraxsocal
390 Followers 464 Following This is the Official Page of the Fragile X Association of Southern California. Spread the word! Our mission is to promote awareness of Fragile X Syndrome.
Northern AZ FragileX @FragileXNAZ
98 Followers 35 Following Fragile X of Northern Arizona is a regional volunteer support group for families affected by Fragile X Disorders. #FragileX
Tim Ferriss @tferriss
2.0M Followers 3K Following Author of 5 #1 NYT/WSJ bestsellers, early-stage investor (https://t.co/cpVCd1q9Hk), Tim Ferriss Show podcast (1B+ downloads), founder of https://t.co/9bQjti0XgE
Rachelle Gatewood @raralees
100 Followers 88 Following Mother of 2 beautiful daughters, wife of an awesome man who is committed to spreading the word about Fragile X Syndrome.
STX209 Stories @STX209_Stories
90 Followers 164 Following Fragile X and Autism parents united in support of continued research of STX209/Arbaclofen.
Patricia Kisamore @fragilexpk
716 Followers 1K Following mom to 2 fab children, SPED teacher, Fragile X Syndrome adv, avid reader, 4ever a GM lovely 💔 https://t.co/F4KE2rapgR
HeartlandFX @HeartlandFX
70 Followers 67 Following Heartland Fragile X Alliance is a place where families affected by Fragile X can connect, share information and support each other.
Liz Henderson @LizHenderson01
125 Followers 298 Following From Oxnam to Dunning. Head, Craigclowan School & Nursery.
RareShare @RareShareOrg
5K Followers 2K Following RareShare is a social platform building communities for patients, families, and healthcare professionals affected by rare medical disorders.
autism/fragile x mom @autismfragilex
25 Followers 5 Following
stacy @FragileXception
316 Followers 753 Following Mom, Wife, Molder of the Future, EdTech & music lover-David Cook, Ryan Star & GRO, Wishing, Hoping, Waiting, Fundraising for a Fragile X cure! #BetheChange
FriendsforFragileX @FriendsforFX
115 Followers 101 Following News and information from the Friends for Fragile X non-profit organization. Visit our Facebook: http://t.co/dujOXxXkEI#Xtraordinary 💓 Kara Frech told us her Aunt Josie is not only Xtraordinary, she is also a HUGE help to Kara and her sons, saying she watches and entertains them, goes to doctor appoints, and helps with X Strides every year! 😍 More: hubs.ly/H0zZ0XH0
Australia lights up for Fragile X: raising awareness of FX conditions and in support of those living with Fragile X #lightupforfx
In recognition of Fragile X Day, we are sharing Ben's story. Since receiving supports tailored to his needs, Ben is now actively participating in his local community and working on his health and fitness goals. Tap for his story 👉 bit.ly/3fW6R9G #FragileX
Today we're turning orange for @FragileXAus Fragile X Awareness Day. Fragile X syndrome is a genetic condition which impacts around 90,000 Australians. Find out more: fragilex.org.au #lightupforfx #fragilex
We did a thing. It was hard. The whole first part she slept and I felt like I dragged her and I was so stupidly sad. But she woke up, perked up, and said she had a great time. One more time, I don't know why I felt we needed to. Maybe we'll get there again. But this was good.
DNA testing detects more than 99% of individuals (both males and females) with Fragile X syndrome, as well as Fragile X carriers. Learn more about testing and diagnosis: hubs.ly/H0sk99J0 #FragileX
Amazing morning #City2Surf Fantastic times for #fragilex teams. In a crowd of 80,000 ppl @fastsuitguy FIRST SUIT over the line with 51:01 😎
We appreciate the kind words! We're all in this together with @FulcrumTx to find a cure for #fragilex #autism @bjork5 x.com/fulcrumtx/stat…
@FRAXAresearch is a great resource for parents of children with #FragileX or anyone who wants to get involved in the community
Congratulations to all our friends overseas for their awareness day activity! Can't wait for European FX day 10th Oct! #fragilexawa
nice 11 miler Run until I got stung by a bee #ThisGrandmaRuns4FragileX #SparkleSkirts @sparkleskirts @FRAXAresearch bit.ly/SS-Roxanne
July is #NationalFragileXAwarenessMonth! Let’s celebrate the entire month of July to raise more #awareness about Fragile X.
Melbourne lighting up for Fragile X awareness tomorrow! Thank you @melbourne_star #lightupforfx #lightuporangeforfx #fragilex
People with #FragileX make for great friends!
Great news! FRAXA funded the initial study that led to FDA orphan drug status for fragile X! #fragilex #autism autifonytherapeutics.com/publications/A…
Syd, Melb & Bris | New clinical trial of skin gel for treatment of FXS symptoms in people aged 8-17 yrs #fragilex clinicaltrial.mediscreener.com/fxs/
Parker's story made the local news! #fragilex #Prom #PromKing #specialneeds #Disability #fragilexsyndrome #autism #fx #respect #inclusion x.com/shane_wmbd/sta…
"A laugh a minute with this one told him to go pick something for supper and this is what I came down to." 😂🍌 #fragilex
Thank you so much for your amazing support Sarah! x.com/doerksensarah/…
I'm running the #wimbledon half-marathon for @fragilexuk a #geneticcondition that affects my family and myself bit.ly/2oUyYvD 🏃🏻♀️
Went to the doctor for medication refill and they'd never heard of #fragilex - this is why we need organisations like @fragilexuk
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