FALS Support and Information

Do you go to an ALS Clinic? How often?

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.

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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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. 💙💙💙💙💙