Exploring New Therapies for Essential Tremor
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- Опубликовано: 3 июл 2024
- Gabi Belfort, M.D., Ph.D., vice president, clinical development sciences at Praxis Precision Medicines, talks about a new investigational medication for essential tremor, PRAX-944. Clinical trials are planned for the U.S. and Canada to study its safety and effectiveness.
I appreciate your honesty in disclosing the financial background of your sponsors. It causes me to be cautious as to the advice you are giving. How can you reassure me?
We are about sharing opportunities and information that will help educate our ET community and guide them to better treatments and ways to manage the condition. Funding we receive from corporate partners helps us further our mission of education, awareness, support and research. We don’t promote one drug/ device/treatment over another. We provide the information to our ET audience so they can listen and decide for themselves if they want to visit with their doctor about it and learn more about how it could impact them. Many of our partnerships include raising awareness to clinical trials being conducted on possible new medications and treatments for ET. This trials could not happen without the participation of the ET community so the partnerships are a win-win for both sides.
Can I take part in the clinical trial I live in Canada
Vivo en Leon, Mexico y herede el ET de mi madre. Tengo 73 y me afecta el ET desde hace unos 20; no puedo escribir (ni firmar), y se me dificulta el desayuno (cafe, usar los cubiertos, etc.) Me ayuda bastante que tomo 60mg de propranolol a primera hora y a las 2:00pm o despues un par de whiskeys.
About time I am suffering
I understand
Me too
Diagnosed after second COVID vaccine
I'm 23. It's terrible when you're in a coffee shop and can't drink coffee or tea because your hands are trembling. I had a situation where I had to pour water into a cup, so far I have a burn mark. How to date here?
I understand
Or takeaways with the tray . . .
Sadly my identical twin sons with early onset ET had 0 support and lived with me all their lives. I reached out to so many different organizations. They couldn't finish college. No medication works (tried over 25). Only drug that worked is alcohol. Why don't they have whatever it is in alcohol put in pill form? I put up several RUclips videos about ET and my son's experiences. I got quite a few responses from people around the world. Tragically, My youngest son, Michael was killed by blood thinners at UCSD La Jolla March 26, 2020. Dr. Fernandes who signed Death Cert refuses to add ET to Line 112. He has "NO". Michael's neurologist from UCI wrote a letter, another brother who has ET wrote a letter, didn't get ET until his late 30's and Dr. Fernandes will NOT add ET to Line 112. If an ETstudy wants to be done, especially on early onset ET, my son who suffered from ET can't have his experience in life be a part of any study. . Michael was 30 when he was killed. His identical twin brother has been suicidal and we are really doing our best to keep on. Michael is no longer suffering, because he did, and was suffering. He was a Graphic Artist, game developer and so much more. They could never find work. Anxiety exacerbates ET, physical labor as well. They had a late diagnosis of Autism Asperger's in 2017. It should have been diagnosed while they were in elementary school IEP. All signs there. They couldn't get disability benefits. I contacted IETF to no avail. They had 0 income, 0 disability benefits. I have fought for their lives since they were about 21. It is beyond disturbing and tragic. I wonder if anyone will see this and care. ET is no joke and makes easy hard. In my son's Celebration of Life, I spoke about ET. So many people don't know about it and appreciated my sharing. There needs to be more support, especially young adults who need to have an income. Sean is going to try another online course. He is very smart. Taught himself to read, write and speak the Russian language and is currently learning Mandarin. Which is EASY for him. But tremors get in the way of writing, shaving, eating, speaking...Everything! There needs to be more support to help those affected with ET to find understanding people who will employ people with ET. I will be happy to be a spokes person. Especially after my youngest son dying and the disrespect for ET and ASD that have we have come across since 2012. So many people "DON'T GET IT". Here is Michael: vimeo.com/534652129/83d91af457 I'm available on Jill Mitchell RUclips Essential Tremors.
Glutencancer