2 жыл бұрын
2 жыл бұрын
2 жыл бұрын
2 жыл бұрын
2 жыл бұрын
2 жыл бұрын
Пікірлер
@mariekatherine5238 4 күн бұрын
My cousin has a stepson with Fragile X. It took 17 years to get a proper diagnosis. He was said to have ADHD, then autism, OCD, etc. He had already completed his sophomore year in high school, attending regular classes with tutoring four afternoons per week. Since he’d gotten that far without an IEP, he decided to finish without it. He’s now running his own landscaping business with three employees, and has a small house with rental apartment in the back. He continues to be socially awkward, but who cares?
@Sln868 21 күн бұрын
Desejo do fundo do meu coração que esse esperimento de tudo certo e que muito em breve esse medicamento esteja para venda.Seria um sonho ter um médicamento que "curase" o x fragil.
@jordanbrant6648 Ай бұрын
My oldest brother was diagnosed with this when he was about 3 years old. He is and has been the central beacon of peace and true love in our family. He's so full of life and laughter, me and my family have always said he is so unconcerned with all the things that trouble us in life but his love and support of us is so true and so constant, he is a daily reminder for all of us to always be grateful for the things that matter most in life! ❤️
@Jana-w2e 2 ай бұрын
Thank you for describing it:)
@Hope20249 2 ай бұрын
Great discussion. Thank you all
@Hope20249 2 ай бұрын
Very interesting.
@BobandBri 2 ай бұрын
I have fragile x syndrome and I hate it
@CJSkelton 2 ай бұрын
IT has more hpd then people who have hpd and more autism then people who have autism fs😂😂 IT makes them look like they're normal
@ahmedjowhar9005 2 ай бұрын
Can I give my son medicine zatolmilast ?
@ahmedjowhar9005 2 ай бұрын
Can I give my son medicine zatolmilast ?
@scentedgamer8676 3 ай бұрын
👍🏻
@JosephClark-d7f 3 ай бұрын
Vito Neck
@RudolphOphelia 3 ай бұрын
83044 Boyer Burgs
@YücelÇetin-g2t 3 ай бұрын
53756 Kuhn Stravenue
@DorothyMejia-u6y 3 ай бұрын
Carmela Road
@DefoeVerna-k4h 3 ай бұрын
Greyson Track
@ЯрославШульгин-щ5и 3 ай бұрын
12871 MacGyver Turnpike
@URL_1e 4 ай бұрын
I have a few questions 1. Would you have to continue a maintenance dose after the trial? 2. Could it potentially help PTSD or ADHD
@joseviesca2213 4 ай бұрын
Will this drug work on a non verbal teen with a mild form of ASD?
@AustinKama-n3t 4 ай бұрын
Rollin Village
@TeresaBoland-j5l 4 ай бұрын
Dibbert Pines
@CarlPowers-v1r 4 ай бұрын
Jacobson Isle
@heartfulhaidyn 4 ай бұрын
What is the purpose of curing the condition? Like, what do people who are living with it want “fixed” in terms of their symptoms?
@ToynbeeNovia-u7p 4 ай бұрын
Flatley Ville
@LandonMyrna 4 ай бұрын
344 Wilfrid Fall
@JudithBarton-h1s 4 ай бұрын
Nils Shoals
@Eli-ju7zk 4 ай бұрын
I have Frigial X syndrome
@FRAXA 4 ай бұрын
Thank you for sharing. We're here to support you and the entire Fragile X community. If you're looking for resources or information, feel free to explore our website (www.fraxa.org) or reach out.
@teresamcnulty8471 5 ай бұрын
Thank you. I had a child in my home for a couple of years that we tested for this...he didn't have it, but he had the ears and the developmental slowness. I passed out of his life, and wonder how he came out---we were seeking answers then.
@FRAXA 4 ай бұрын
Thank you for sharing that experience. It sounds like you were deeply involved in his care and search for answers, which makes such a difference. It's understandable to wonder how things turned out for him. Fragile X can be a complex journey, and there are many factors at play in developmental challenges.
@Circuit7Active 5 ай бұрын
Nova Mentis Life Sciences (NMLSF) started on some kind of clinical trials for curing Fragile X over a year ago, but I have heard nothing since their "BIG" announcement. Does anybody have an update on their results?
@FRAXA 4 ай бұрын
Looks like the study is still on-going. www.novamentis.ca/autismstudy/
@Hes1oscillations 5 ай бұрын
I'm getting into Fragile X research as a PhD student! Looking forward to following this channel and hopefully contributing to this research in the future
@FRAXA 4 ай бұрын
That’s exciting! Welcome to the Fragile X research community! We’re thrilled to have you following our work and look forward to seeing your contributions in the future. Best of luck with your PhD journey-together, we can advance Fragile X research!
@felisfelidae6113 5 ай бұрын
Does insurance cover that genetic testing Fragile X? I was diagnosed w/Ehlers Danlos but I was never tested for the marker- it was clinical as I had all of the symptoms of Ehlers Danlos Syndrome. I’ve also been diagnosed with ADHD as a teen & Nonverbal Learning Disorder . Mild Ataxia, low muscle tone as well as Strabismus. From ages 18 months I had to wear orthotics & orthopedic shoes (hated those shoes) & had wear bifocals sun I was a toddler. Anxiety , depression, sensory processing disorder. What I understood is that Fragile X is the most common cause of Autism in the Ashkenazi community/ethnicity but not so much in the general population. So, I’m a bit confused Since I’m over the age 23, I don’t get any support. So, is there any benefit for me to get evaluated?
@FRAXA 4 ай бұрын
Thank you for your question! Insurance coverage for Fragile X genetic testing varies, so it’s best to check with your provider. A genetic diagnosis, even as an adult, can offer valuable insights into managing symptoms like anxiety, ataxia, and sensory processing disorder. It may also help your healthcare team explore new treatment options. Consulting with a genetic counselor or your doctor could be a good next step. Here is some more info about testing for Fragile X syndrome: www.fraxa.org/fragile-x-syndrome/cause/#testing-diagnosis
@TastyBitesEU 5 ай бұрын
👍🏻👍🏻👍🏻
@Ripplesinthewaters 5 ай бұрын
My step brother has this. His intellectual age is between 9 and 12, depending on the skill. He can add, but not subtract, he reads at a first grade level, and doesn’t have the skills to live without social service help. However, he does know that he is an adult, even though he may not know his age. Thank you for this video!
@Flyboyminer 6 ай бұрын
Great video, Tech. Sar'nt! Fly Fight and Win!
@andreakonickova6700 7 ай бұрын
Hi is there any chance the drug could be used for fragile-x premutation?
@FRAXA 7 ай бұрын
Thank you for reaching out with your question. The investigational new drugs we're discussing are specifically being tested for treating Fragile X syndrome. While they offer hope in this area, they are not currently anticipated to be particularly effective for individuals with the Fragile X premutation.
@scentedgamer8676 7 ай бұрын
Have they started phase 3 or is it just in recruting phase?
@FRAXA 4 ай бұрын
They are currently recruiting for their large scale phase 3 clinical trial. www.fraxa.org/tetra-therapeutics-phase-3-clinical-trial-of-zatolmilast-in-fragile-x-syndrome/
@scentedgamer8676 4 ай бұрын
@@FRAXA but havent they been recruiting for years?
@FRAXA 4 ай бұрын
@@scentedgamer8676 phase 3 started recruiting late 2022. Typical phase 3 studies can last 1-4 years. It really depends on how quickly they can get all of the study participants enrolled.
@scentedgamer8676 4 ай бұрын
@@FRAXA are they close to get enough participants?
@scentedgamer8676 7 ай бұрын
How long before this will hit the marked?
@FRAXA 7 ай бұрын
The recent webinar linked below has more details about the this trial and the other late stage trial currently going on. kzbin.info/www/bejne/npyklKV6eZV_r80si=WvUiy5aDxwZgWCI3
@scentedgamer8676 7 ай бұрын
How long do the trials last?
@FRAXA 7 ай бұрын
Phase 3 clinical trials typically last between one to three years. This phase involves a larger group of participants and focuses on confirming the effectiveness of the treatment, monitoring side effects, and comparing it to standard or placebo treatments. The exact duration can vary based on the specific objectives, the number of participants, and the endpoints being studied.
@notaxandria_7824 7 ай бұрын
My nephew has fragile x...his father is on the streets refusing help off drugs and his mother died of cancer..I just got a message from cps today after years no contact saying he needs a place or he's going to foster care😢😢😢😢😢
@kaylahall1219 3 ай бұрын
How is going?
@BigdadiSixty9GTC 2 ай бұрын
@@kaylahall1219From the non response, he's probably in foster care
@scentedgamer8676 7 ай бұрын
Lost all hope after this vid
@shankar7372 7 ай бұрын
dont lose hope, the stem cells therapy is available in countries like India, china, mexico.. i was treating my daughters autism, i didnt know she had fragile x.. she is improving a lot.. here they r still researching.. i dont understand y they r not collaborating studies results.. they r still studying gut microbiome.. in india they r already doing it! i wish India focussed on fragile X
@TastyBitesEU 7 ай бұрын
@@shankar7372how did the stemcell work?Is it expensive?
@scentedgamer8676 7 ай бұрын
@@shankar7372 how much did u pay?
@FRAXA 7 ай бұрын
@scentedgamer8676, Sorry to hear you feel this way. Research progress can be slow, but every step brings us closer to treatments and a cure. FRAXA remains committed to advancing research and supporting the community. The dedication and persistence of researchers, advocates, and families are driving forces behind our efforts. Together, we can stay hopeful and keep pushing forward.
@scentedgamer8676 7 ай бұрын
@@FRAXA i know its slow and understand why.I also know that fraxa does their best.I have been following fraxa for over 10 years since mark bears solution failed and zynerba as well,but when i saw this video about the dosages vary from person to person there will never be a fda aproved treatment for now,maybe in 100 years or something but not in the near future.
@TastyBitesEU 7 ай бұрын
When will upload the latest webinar?
@FRAXA 7 ай бұрын
Hi, Thanks for asking! We just uploaded half of it. We'll have the 2nd part up later this week. kzbin.info/www/bejne/bYGviJ2IoLWchqMsi=ji6hiulBz9czHlhx
@TastyBitesEU 7 ай бұрын
@@FRAXA Awesome,cant wait to watch it.
@TastyBitesEU 7 ай бұрын
How far are you with this trial?
@FRAXA 7 ай бұрын
The trial is still progressing. Zynerba has been acquired by Harmony Biosciences and are pushing the trial forward without any interruptions. fragilexhelp.com/
@TastyBitesEU 7 ай бұрын
Have u come any further after 2 years?
@FRAXA 7 ай бұрын
We are moving forward and excited about the future. We remain focused on our goal of effective treatments and ultimately a cure. There are many options in the pipeline and we continue to explore all avenues that show promise. The more runners in the race the better odds one finishes.
@TastyBitesEU 7 ай бұрын
👍🏻👍🏻👍🏻
@patrickbenja34 8 ай бұрын
Starting to think that I have this fragile X syndrome.. Don't think this existed back in the '80s when I was born and diagnosed with ADHD but I also have a lot of social issues I don't like being in large groups with a lot of people, I am generally happy and laughing, along with other anxiety issues I'm 41 yrs old now when I was young in school I had behavioral issues and learning issues, They put me in the bad kid classes instead of the learning disability ones because My intellect was between regular kids and kids with learning disabilities
@FRAXA 7 ай бұрын
A genetic test will give you the answer. Sorry to hear about your struggles through life. www.fraxa.org/fragile-x-syndrome/cause/#testing-diagnosis
@shadrach6299 7 ай бұрын
Fragile X has been around a long time
@kalyasaify 6 ай бұрын
as an autistic: trust me, neurotypicals (aka the "average ppl") are actually the weak ones with disabilies like low IQ, lack of empathy and other symptoms. neurodivergent folks are geniusses. don't trust researchers and better check out what the system does to us (there are many names, for example hans asperger, just check it out where this whole topic is rooted. humanity is sick...) I bet you'll understand as soon as you see the pattern. also check out temple gradin, she is brilliant, her mind full of facts. don't trust most ppl, their brains are TOTALLY different wired as well as the rest of our body. they won't and can't understand (because not smart + being manipulated by the psychopathic people of the system)