The Brewing FDA Battle Over ALS Treatment

Learn more :_brain:A Deadly Legacy Raises the Stakes in the War Over Fast Drug Approvals: www.bloomberg.com/news/features/2022-12-23/als-pat…

I lost my brother to ALS in 2017 and all I can say about it that is was a nightmare for all the family.

My mother died in 1977 of ALS at the age of 61. She faded away physically during a span of 3 years, yet she remained mentally strong until the end.

My family has Familial ALS. I’ve lost 6 family member including my father in 2019. We need a cure.

All diseases with guaranteed death or near guarantee should require zero approval for patient access but FDA should monitor patient disclosure and data tracking.

I have ALS so when I start up the stairs I say out loud to myself, "Brain, lift my legs, lift my legs". I say this during my whole trip up the stairs. I have not tripped or fallen down since I started this.

I don't have this but, we need to find a cure asap

My Mom died from this disease 26 years ago. It is one of the most devastating and horrific diseases out there. And not much has changed in 26 years. It is very progressive, and sucks the life blood out of a person. This disease destroys the body, but the mind is intact. My Mom could not move, eat, swallow or breathe. She was on a ventilator. But her mind was still present. She had told me when she could no longer communicate to let her go. Taking her off life support was the hardest thing I have EVER had to do! It literally broke my heart

Heartbreaking, beautiful, optimistic story.

My Mom keeps going to the emergency room, because she can't breath. She went last night at Duke Regional ER. She has a feeding tube, but the muscles in her neck are causing the breathing problems. I do not know what to do. I thought I was tough as nails, but loosing my mother this way makes me feel powerless

You’re right, any option no matter how small the chance of success is worth pursuing.

I wonder why ALS patients are not being told about the successful Japanes work with high dose injected methylcobalamin ? The trials do not go far enough though. One needs to inject the hiogh dose MeCbl DAILY, and. use neurological support nutrients like ALA and benfotiamine and phospholipids. The FDA cannot stop you accessing this treatment!

I have ALS. I think it’s the numbers. Not enough of us have it. It’s a dollar per life saved equation. Part of me 100% understands this.

If there is only a small percentage of people with ALS I do not think there will be a cure. The fact is companies are always looking for the biggest profit.

I am 50 going on 51. Fortunately I was adopted. I do not share My Mother's gene, but she is my only Mom.

It's like the FDA doesn't want a cure to be found

Our life begins with a cry at birth, and when we leave this human world, we bring along nothing but our lifelong afflictions.

I was made aware of ALS last year when I saw the wedding video clip where the groom danced with his mother who had ALS. That scene was heartbreaking for me but at least the groom was able to dance with his mother...

What is new treatment please tell me als mnd I am young please help me 😊

More definitely needs to be done for those suffering this condition. Keep fighting! I truly believe investment needs to be made in prevention for those with familial history. The Wahls Protocol and Dale Bredeson’s The end of Alzheimer protocol both show that there are lifestyle interventions that can prevent, reduce, and even reverse neurological disease processes. I believe there’s hope that similar approaches can work to prevent the onset of ALS and even slow progression in the very early stages. Don’t think that a miracle drug is the only way. If you have a familial ALS gene, check out Dr. Terry Wahls talk on ALS on YouTube.