FALS Patients Like You: An Interview with Samperio

Today, more than 3,600 people with ALS are sharing their health data and experiences with patients like them.  Recently, we announced our new genetic search engine for ALS patients, designed to help members find others like them, right down to the molecular level.  With 10% of all newly diagnosed ALS patients joining PatientsLikeMe, there are more and more people sharing their health information, including genetic data, to help learn about this disease.

Our research team’s geneticist Dr. Catherine Brownstein recently interviewed Samperio, one of the first members to enter in his genetics on PatientsLikeMe. Later this year, Catherine will be presenting the genetic data shared on PatientsLikeMe to the leading doctors, researchers and thought leaders in the industry to help us all learn more about ALS, and the genes affecting the condition.

Here’s what Samperio had to say about life with familial ALS (FALS) and hope for the future.


18520 (Catherine) Thanks for agreeing to the interview!  You recently joined PatientsLikeMe and revealed that you have a SOD1 genetic mutation, the cause of your familial ALS.  When did it all start and how has this form of ALS affected you and your family?
(Samperio) My ALS is affecting my family [the same] as any other form of ALS. I stopped working, and my wife has to work for both of us. I never had the chance to play soccer or teach my 9-year old son to ride a bike, as I did with my previous sons.

I lived the same ALS story with my mother.  She died when I was 18. It took her approximately 10 years, from beginning to end. My symptoms begin at age 40; my ankles were weak. So I was suspicious of ALS. A few years later, I had the DNA exam in Houston, TX and it came positive for FALS.

My biggest hope is my family, especially my wife. I know what a burden I am, since I lived that experience with my mother.

18520 (Catherine) You previously mentioned that your doctor had never seen your genetic mutation before.  How much do you know about your SOD1?
6001 (Samperio) Almost nothing. The DNA exam was performed 6 years ago. The doctors never told me anything regarding my genetics.

I have never met anyone with FALS.

18520 (Catherine) So now you’ve joined a site with people just like you — even people with the same genetic causes for ALS.  What has been your experience on PatientsLikeMe?
6001 (Samperio) By joining PLM, I have found so much comfort on all the daily interaction, reading all those people [with the same disease] who share the same interest as I do.
18520 (Catherine) What is your hope for the future of ALS research?
6001 (Samperio) As for the future of the ALS research, obviously to find a cure for this disease.

I will give all [my] help to the ALS cause.

18520 (Catherine) Thanks again for sharing, Samperio!
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2 thoughts on “FALS Patients Like You: An Interview with Samperio”

  1. Hi! Our family has been riddled with FALS for at least 200 years – first officially documented with Dr. Osler’s report here: http://is.gd/1CaIZ. The Farr family has the SOD1 A4V mutation as well. Just wanted you to know you are not alone in your fight, this family is in it with ya!

    This site is amazing and allows a level of information sharing about patient(family) progress and available treatments that I haven’t seen before. I would love to see a “family tree” feature so we can connect family members that have the disease. This will help us further understand the penetration of the disease within the family, cross generations. Also provide a valuable resource for future generations trying to understand the history of the family as related to these specific genetic conditions.

  2. Laurie Jakubauskas

    When will people recognize fibro/cfs is a way for pharmacuticals to make $. It is viruses & tickborne diseases. I am 100% better after being properly diagnosed & treated. watch the documentary “Under Our Skin”. I almost died. I get so angry when I read these stories. Fibro/cfs are labeling you w/name & not finding what”s really wrong w/ you. I hope some og you look further into this.

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