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. 💙💙💙💙💙💙.