FALS Support and Information

02/18/2026

Do you go to an ALS Clinic? How often?

02/18/2026

What medication or treatments are you on? Can you tell a difference?

02/18/2026

Key Statistics and Facts
Prevalence: fALS accounts for approximately 5%–10% of all ALS cases in the U.S.. The remaining 90%–95% of cases are classified as "sporadic" (sALS), occurring without a clear family link.
Genetic Basis: While only 10% of cases are familial, research suggests up to 70% of fALS patients have a detectable genetic mutation.
Inheritance: Most fALS follows an autosomal dominant pattern, meaning a child of an affected parent has a 50% chance of inheriting the gene mutation.

02/18/2026

Inheritance Patterns
Autosomal Dominant: The vast majority (e.g., A4V, I113T, G37R) require only one mutated gene from one parent.
Autosomal Recessive: Primarily seen with D91A in specific populations, where symptoms usually only appear if both parents pass on the mutation.
De Novo: Mutations can occasionally occur spontaneously (without being inherited from a parent), such as W32* or H81Y.
National Institutes of Health (NIH) | (.gov)
National Institutes of Health (NIH) | (.gov)
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02/08/2026

https://www.insidealshcp.com/en-us/home/genetic-als/a-disease-of-multiple-mutations.html?cid=PPC-GOOGLE-25_InsideALS_HCP_UB_Genetic+Information_Phrase~S~PH~UB~NER~HCP~CON-amyotrophic+lateral+sclerosis+gene+mutation-NA-2186804563171&gclsrc=aw.ds&gad_source=1&gad_campaignid=20484876714&gbraid=0AAAAApVRLuCogj-kQAwTX-ASWXuwFOJBk&gclid=EAIaIQobChMIh_KIwPvJkgMV41J_AB1lZjawEAAYASAAEgJvjvD_BwE

02/08/2026

02/08/2026

11/14/2025

I sat in the waiting room and watched numerous people check in. Most of the patients had difficulty walking and of course my first thought was, ‘Do they have ALS too?’ The next thing I know i have tears running down my face. Not sad tears, but tears of hope and gratitude. Tears of compassion for others with ALS and other rare diseases. Sometimes the reality of this cruel disease hits me hard. Out of the 30,000 people with ALS in the US, the treatment is only viable for about 500. Out of those 500-not everyone is on QALSody—yet. For some it may just slow down the progression of the disease. For others it may halt the progression. And for a few it will not only halt the progression but they will even see improvements in some areas. Last but not least, a smaller group of pALS will be “Reversels!” I think I’m in group 3. I’m not sure that I fall into the reversals category or not. I think I’ll ask during my next research visit. ALS is cruel. I am not and I refuse to let this disease turn me into a negative fearful person. Life is to important to waste time on negativity, drama, or undesirable people and situations. I choose to be happy. I choose to be positive. I choose to make a difference every day! So those tears were a result of me acknowledging how fortunate I am. I refuse to sink! I Am ALS. 💙💙💙💙💙

11/02/2024

After having to stop the QALSody treatments due to a reaction to the drug after a year of the treatments, I received GREAT news after my neuro exam today. There is no decline in most of my muscles! There is a slight decline in my hip flexors and upper leg muscles. I was able to start the QALSody back up. Research shows that this treatment is particularly effective for the legs so I am hopeful that the declines will be reversed. If not, I’m still in a good place.

And, my FVC went up 3 points!!! When I started QALSody it was at 30. It should be between 90 and 100. Now i have a FVC score of 49!!! This is huge in the field of ALS!!! (FVC-forced vital capability which effects how well a person can breath).

Overall, my appointment went better than i could have expected for having to miss several doses. The spinal tap was a breeze this time. Dr. Carrberry and Dr. Grignon are miracle workers. 💙💙💙💙💙💙.

07/07/2024

OH HAPPY DAY!!!

It is working!!!! I actually feel a significant difference from my waist to my toes!!! ✅ I feel something other than pins/needles, swollenness, stiffness and all the nasty stuff!! On a scale of 1 to 100 with 100 being very bad… I was definitely at 100+ (bad) until this morning when I woke up at 4 a.m.

This morning I think it is closer to a 50!!! It felt like everything was numb and dead asleep from the waist down. Now just from mid thigh down (but less asleep and numb every where). This makes doing everything or anything very challenging.

I know I still have a long long way to go, but this is huge to me!!!! Physical therapy here I come — if doctors approve, of course.

I did 6 days of a strong oral Steroids and I continued to get a little worse. Was admitted into hospital July 3rd.

July 4th - intrathecal injection of a steroids in the spinal cord. Lost ability to urinate … ouch!! I don’t like catheters. Now its back 🙂 MRIs showed inflammation in all three areas of the spinal cord but I was still trucking along with help from my family and friends. Probably got by brightest move ever.

July 6th- intravenous steroids. Whoo Hoo — positive changes ahead.

This morning, July 7th - starting to feel a positive difference.

The plan as of yesterday—possibly go home today on with a script if 20 to 30 days of oral steriods that will taper off. Further QALSody treatments are in the future as of now. They will administer steroids directly into the spinal cord when they do the treatments. (Every 28 days) in attempt to prevent this from reoccurring. Schedule TBD. My next treatment was scheduled for 7/18 but that is likely to be postponed.

I still have a difficult time walking and doing daily things, but I’m heading in the right direction!! I refuse to Sink!!

💙💙The doctors confirmed that all these symptoms were a side effect of the treatment and definitely NOT the ALS progessing! 💙💙 I may have to delay or skip a dose of the Qalsody/Tofersen, and that is overwhelmingly scary to me. I don’t want to see any ALS progression and I was heading down a fast progression road before the treatments started. The progression had been very slow prior to March 2023. By May 2023 I was sure due to my breathing difficulties, I likely only had several months left. I couldn’t step up on a curb, but I was still walking. It was effecting my diaphragm the most and therefore my breathing, but I was getting weaker muscles everywhere. My FVC (breathing) drooped from the 80s/90s to a 31 and it was difficult to breath just sitting and talking or eating. It slowly has increased to a 43. That’s not great for a person, it should be between 90-100. However, with ALS i should Not be improving so that shows that the Qalsody is working!!! I want desperately to stay on that trend.

I know that compared to someone without a neuromuscular disease I am far from typical. I have to compare myself to myself and those numbers and notes are pretty darn impressive! (I’m humming the Beatles song, “With A Little Help From My Friends 🎶🎵” as I write this).

The research teams working on treatments for geneticly linked ALS have definitely extended my life and added quality. Of corrse I am especially grateful to the University of Miami clinical research team and the ALS Clinic team. They fought hard to get me in this treatment even though it had not been FDA approved. They knew first hand from the clinical trials that it was my only hope. I was the first person to receive the treatment here outside of a clinical trial. My amazing Medical Team deserves a huge shout out — Anne-Laure Grigon (my rock), Daniel D. (i called her my handler), Dr. Carberry, Dr. Benatar, Dr. Granit, Maricella, Gina, Katrina, Kyra —https://als-research.org/about-us/researchers/
Natalie - Biogen Patient Rep

I know I still have a lot of recovering ahead of me. I am actually accepting and asking for help now 🙂. That is huge!! My friends have relly stepped up again and I cannot put my gratitude and live into words. I’ve had friends check on my mom, bring her food, check on my critters and clean up after them, clean my house, and help in so many ways. It is all the little things that help. Basically I’m starting to get help with all the things I’m continue to struggle to. (I have been trying to act as if ALS has nit limited my physical abilities and it isn’t working). I’ve had friends staying in Miami so that I’m not alone and thst is expensive. I have FB friends, newer friends, work friends and lifelong friends reaching out from everywhere via FB, texts, phone calls and messages daily. (I’ve struggled to keep up with responding but I will). I have the most incredible people in my life and I love and respect each of you.
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Our Team About Us / Our Team Benatar/Wuu Research Group Michael Benatar, MBChB, MS, DPhil PI Joanne Wuu, ScM PI Nathan Carberry, MD Neurologist Julie Steele, RN Project Manager Anne-Laure Grignon, MSc, MD Project Manager Anne Cooley, BSc, MPH, CCRP Project Manager Alondra Andino-Flores, BS Research....

03/23/2024

Today went very well. My respiratory test came back with improvements from last month. That really gets me Excited and happy because typically with ALS you don’t see improvements once you’ve lost an ability. I’m grateful that the FDA did give QALSODY a conditional approval. There are very few treatments or prescriptions that actually help ALS. The last one that was approved conditionally prior to QALSODY, was just shown to be ineffective and I suspect that it will be removed from the FDA approval list. My doctor told me to stop taking it since. The only other one is riluzole which is shown to extend a pals life bypossibly a few months. To think about the condition that person is in the last few months that they’re alive is pretty scary in my opinion. When I think how fast my respiratory system was declining, and I’ve talked to my doctors about this, without QALSODY I don’t think I would’ve made it past October. I dropped from the 80s to the 30s in what seem to be overnight. Now it’s slowly coming up and that is at 43. Everyone who contributed to the ice bucket challenge or donated to any ALS research organization, thank you from the bottom of my heart because these funds are making treatments like QALSODY available. I’m so lucky that the one treatment out there that makes a significant difference is available specifically for the genetic mutation I have. For once being rare genetically worked in my favor.