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@magdaannahandley5185 3 күн бұрын
I have FA and i am 52, i dont have the heart disease anymore because I treated it a long time ago before I had my baby who is 32. I also don't have diabetes. I think that it was probably scard off when I treated my heart condition with lot's of cayenne pepper. Its really good for your heart. I learnt this when I was 18. I went to a health retreat for 10 days. I would like to know how I would be able to get some Omav in Australia? I think it will be available sometime this year. Do you know when? Please and thank you From Anna xx
@alfridacara1502 21 күн бұрын
What about mRNA can FA be cured by it?
@CureFA 24 күн бұрын
Donating to FARA in lieu of a holiday gift helps translate research grants into FA research breakthroughs! To learn more or donate, visit give.curefa.org/giftofresearch24
@whussein 24 күн бұрын
My mates 🩵👑
@chandler_h 26 күн бұрын
Yesss that's my FAmily :) Let's cure FA!
@halimaboughriet9492 27 күн бұрын
My name is Halima from Algeria. I am 24 years old and I suffer from Friedreich's ataxia. The problem is that there is no medicine that helps cure the symptoms.😢
@nourdzair552 26 күн бұрын
Force à toi ma sœur mon fils de 11 ans l'a aussi.
@halimaboughriet9492 23 күн бұрын
@@nourdzair552 Vivez-vous en Algérie?
@nourdzair552 23 күн бұрын
@@halimaboughriet9492 je suis Algérien de Mostaganem mais je vis en France
@nourdzair552 5 күн бұрын
@@halimaboughriet9492 non en France mais je suis de Mostaganem
@nourdzair552 2 ай бұрын
Thank you ❤
@nourdzair552 2 ай бұрын
Thank you ♥️
@Baernhardiner 2 ай бұрын
Shame they only provide sites for clinical trials on one continent.
@nielsjjw5810 2 ай бұрын
Why not supplement with frataxin then? And carnivore diet to minimize free radicals? (Sugar creates a lot of fr's when burned in mitochondria) Anyone tried this?
@CureFA 2 ай бұрын
Larimar Therapeutics is currently investigating a form of frataxin replacement in clinical trials: www.curefa.org/drug-development/nomlabofusp-cti-1601/ Unlike gene therapy, which is a one-time-only dose, protein replacement therapy would need to be taken on a regular basis. There are currently no studies that indicate whether a carnivore diet may be beneficial in FA. It's important to talk to your doctor to decide on the best diet for you.
@Baernhardiner 3 ай бұрын
The Brunel University of London has a ongoing Cell an Gene Therapy approach aswell. But it's not on your pipeline chart. Do you have knowledge of it?
@CureFA 2 ай бұрын
Absolutely! We are excited about the work being done at Brunel University of London, and FARA is proud to have provided grant funding for this mouse study: www.curefa.org/funded-grants/therapeutic-activity-of-a-haematopoietic-stem-cell-delivered-tissue-penetrating-peptide-in-a-friedreichs-ataxia-mouse-model/ There are many promising academic research projects underway, and FARA is committed to supporting these efforts. While projects like the one at Brunel are currently in the academic research phase, we're excited to add them to our drug development pipeline if they progress to a company or enter human clinical trials. We're always closely watching these developments and are excited to see how they advance!
@carlaraimer718 4 ай бұрын
Thank you
@Sakibhridoy-u2h 5 ай бұрын
Hi, I am Sakib Hossain Hridoy. I have FA, and i am from Bangladesh. suffering form FA last two years. Please help me who to i get omaveloxolone.
@cintiafonseca7730 10 ай бұрын
FARA❤
@akshajdabral287 11 ай бұрын
hi , Please make this (Omav) a available in India. Nobody is ready to take initiative...Please take a look at this matter in India....
@pawankalyan3318 11 ай бұрын
But skyclarys not available for all when available this in India
@cintiafonseca7730 Жыл бұрын
Este vídeo me deixou emocionada!
@giuseppe006 Жыл бұрын
There is talk around about safety for the cardiac side, but are there any benefits? I think so, because if the mitochondria work better, they will do so everywhere and if there is a neurological benefit there must also be a cardiac benefit, right?
@AquariusGate Жыл бұрын
An interesting few minutes. Ots amazing how neuroscience digs deep for information and misses much on surface reflections. Have you considered that every sense perception is a variation of touch? Proprioception mirrors posture of attitude, as well as body dynamics too. I'm big on mirror instincts and mirroring as internal signalling.
@zakwood3094 Жыл бұрын
i have fa, but am not great with the science of it. This really helps thanks
@Meshamu Жыл бұрын
But the tested mice never learned to say NRF2 properly, calling it "narf" instead.
@jonnip7225 Жыл бұрын
My family member was approved to receive this new treatment, and is already showing small improvement! After 35 years of waiting, a treatment for Friedreich's Ataxia is here! This is a huge milestone, and we are so grateful.
@krishnavenivallamdasu5529 Жыл бұрын
Hii Im from India and my family member is having Friedreich's Ataxia. So how to approach to receive this medicine? It is not available in India. Please give your contact details like email id. I want to talk to you further more regarding this.
@jonnip7225 Жыл бұрын
@@krishnavenivallamdasu5529 Reata Pharmaceuticals makes the medicine called omaveloxolone, also called Skyclarys. The company can be found online and reached on the internet.
@michelepallaver Жыл бұрын
It's really difficult to understand because of bad audio. Is it possible to find this video in paper? At least the part of Sulforaphane . thx
@MuhammadRising Жыл бұрын
"Interested in music" hmm! Remind of me of one girl character from the anime! Same interest & same disease!
@athivijayakumaran2988 Жыл бұрын
When we will get it in india, FDA and The company Discovered omav must circulate to all parts of the world
@kennethdarlington682 Жыл бұрын
Just finish speaking to a friend of mine who was suffering from Ataxia 🤒🤒for years but after a recommendation of Madida herbal center’s treatment to him, all his symptoms and ataxia was reversed with him completely restored to he normal self….
@klyrouxas Жыл бұрын
Do you know if this device exists in Europe ?
@chandler_h Жыл бұрын
Hi I have FA and I think it's kinda fun. This seems pretty legit. Looking forward to trying this. Thanks, FARA! See you at the RideAtaxia in Florida :)
@partyushgamers3742 7 ай бұрын
Have u tried this treatment and does it work?
@klyrouxas Жыл бұрын
Thank you very much for your help to provide us with this video.
@paulalopezgalindo6332 Жыл бұрын
Hi I'm 24, I have AF and u am from Spain. My dream is be curate from ataxia. And you fara are my heroes. I'm whishing omevaloxone too
@AmaanKhan-ju9vn 9 ай бұрын
Hi I'm also suffering from freidrich ataxia
@partyushgamers3742 7 ай бұрын
Dose it work I mean this treatment 😊
@liamzgaminghd8683 Жыл бұрын
Let’s all sit tight with our fingers crossed today and hope for some positive input from the FDA because having access to something as big as Omaveloxolone is will change our lives forever in soo many ways, As soon as I know I will literally shed tears of relief 😭
@UmaShankar-fy2fw Жыл бұрын
Hi I'm suffering from FA since three years waiting for omaveloxolone.....I'm from India Please help me
@gowrishankar1367 Жыл бұрын
Iam also suffering from frda... Iam too waiting for this
@bishnugiri5665 Жыл бұрын
My both children are diagnosed with FA.. Omaveloxolon has been a great hope for me😭 did you guys get any further updates??
@gowrishankar1367 Жыл бұрын
@@bishnugiri5665 yeah it costs more than 2.5 lack dollers
@gowrishankar1367 Жыл бұрын
Per annum
@bishnugiri5665 Жыл бұрын
@@gowrishankar1367 that's way more higher price, isn't it🥺 Are you having this treatment?
@amaliamaranhao1625 Жыл бұрын
Hi, FARA team, is it possible to allow subtitles in Portuguese for this video? Thank you very much
@abahe-ataxiashereditarias Жыл бұрын
Thank you so much
@padraigcoyne783 2 жыл бұрын
Inspirational!
@ducativermelha8208 2 жыл бұрын
good provede
@m.angelacenciqueiroz7517 2 жыл бұрын
Precisa tradução em português
@cintiafonseca7730 2 жыл бұрын
Palestra excelente! Ficou emocionada! Um grande aprendizado!
@amaliamaranhao1625 2 жыл бұрын
Can you please activate the automatic Portuguese translation for this video? It currently cannot be done .
@yayaboat9224 2 жыл бұрын
Please help my son, Jordan. He has lived with this disease for 29 years. He has Not given up hope for a cure❤
@zaynattia6953 Жыл бұрын
send me ur number plz