i have c9 and ALS2 genes. I have C9 als now. Also mine started with muscle and nerve effected that causes my heart , bp and temp to be broke and erricat. Also a weak diaghram. then i started dropping things and falling down. Drove the drs crazy haha.
@user-xw8er3nq8n3 ай бұрын
kzfaq.info/love/aKN985RXdby3WwTaJGtTdw
@sammyp15563 ай бұрын
I am a doctor that works with patients that have ALS (Dr. Samantha Pryor). I graduated in 2019, there was Edaravone and Riluzole. I am excited about all the research that is going on, because I am pre-symptomatic fALS. Sarah my dad was also diagnosed in 2015.
@End_the_Legacy3 ай бұрын
So sorry to hear about your father. Check us out at EndtheLegacy.org if you want to be involved!
@sammyp15565 ай бұрын
Precision medicine, Dr. Sammy Pryor! Thank you Dr. Kiernan for this talk.
@sammyp15566 ай бұрын
I agree with Dr. Arianna we need genetic counseling before testing for C9orf72 repeat expansion.
@sammyp15566 ай бұрын
I hope we can see a trial with the G2C4 ASO!
@sammyp15566 ай бұрын
As a doctor I love the science talk!
@dr.sammypryor6 ай бұрын
I have a Playlist on ALS.
@sammyp15566 ай бұрын
fALS here. Thank you for this presentation.
@kendallarielle78858 ай бұрын
😢 'PromoSM'
@lotwm110 ай бұрын
thc and hemp gummies slow and stop it. even the hemp cream in ones nose twice a day. and also on a bi pap early on. I am c9 and ASL2 and been doing this doing good for 7 years
@kenm66096 ай бұрын
Still going strong? Scared I might have ALS I have I am having many weird symptoms that correlate with it. How often do you take thc and hemp gummies etc?
@lotwm16 ай бұрын
@@kenm6609 i take half of thc gummies. and hemp one together. You take them every 4 to 6 hours. I started on 6 hours but that was over 6 years ago. and now i take every 4 hours and helped. i take them around the clock. night time my body wakes me up to take them on time. I am still mobil , talk and can eat most things not all. And pace my self but even climb some reg type stairs slow and back down . Also helps you eat when not hungery ever. and helps saliva. I take stativa ones and i never feel high. I just feel normal on this stuff and sleep with a bi pap for 6 years and my lung dr says is not medical posible i am doing so well with a weak diaghram and i have ashma.
@lotwm16 ай бұрын
Also i just got diagnosed with Breast cancer but get this what i found out. i have 3 types of fast moving cancer two of them is progesterone and estrogone but is hr neg . so means something is stopping the protiens from feeding the tumer. And when i looked up Thc and ALs. They are trying to find something to stop the protien from damaging the muscles and nerves. well guess what that explains why my thc and hemp is doing with my ALS to. And why me and a lady in florida who has had this for 30 plus years ALS is still alive.
@kenm66096 ай бұрын
@lotwm1 Sorry to hear about the breast cancer. Glad you are still doing well though. Do you mind sharing what dosage hemp and THC gummies you eat and how often?
@lotwm16 ай бұрын
@@kenm6609 i take half a thc gummie 5 mg they come in 10 mg. and one full hemp one i get off of amazon. with it every 4 to 6 hours. They stay in your system that long. I started with 1/4 gummie thc and hemp full one . and now up to the half and keep that doese now. but i take them now every 4 hours and use to 6 but i am in my 8th year and still mobil and talking and eating live alone take care of myself. What i discovered is Thc and hemp stop the protiens from attacking the nerves and muscles.
@pesterlig11 ай бұрын
An apple a day...
@pesterlig11 ай бұрын
Brilliant presentation and fantastic graphs. I learned so much. I am curious about why the novel biomarker drops off as the disease gets worse? Any thoughts on that? Also, why is there a significant difference between how much HDGFL2 is produced in presymptomatic men & women? (Having to do with the function of HDGFL2? - a sex-linked protein?)
@End_the_Legacy10 ай бұрын
I believe the informal suggestion provided ( of course not proven) is the loss of function starts the cascade that leads to neuron damage/ neurodegeneration and at some point the maximum loss of tdp-43 function occurs which precedes death.
@want2bAsaint11 ай бұрын
Thanks for everything you do for our community ❤
@brendamcclure1482 Жыл бұрын
Dr Jude Robert saved my life from ALS disease. Visit #drjuderobert