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How different generations living with SMA can teach one another

Meet Regina and Al. Their friendship and respect for one another all started at a fundraiser before a Phillies baseball game in 2019. “I watched Regina give a beautiful speech at the event about her recently diagnosed son, Shane,” recalled Al. “I thought to myself, ‘My friends at Cure SMA need to meet this amazing mom and get her involved.’”


This topic has 8 replies, 3 voices, and was last updated 2 years, 3 months ago by Kevin Schaefer.

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    • #11862
      Michael Casten
      Participant

      We’ve been using the AA Diet for several years now and have found a definite advantage our daughter has experienced due to the diet. Does anyone else have experience with this diet or would like to know more about it?

    • #11908
      Kevin Schaefer
      Keymaster

      I never used the amino acid diet, so my knowledge of it is limited. What are some of the pros and cons of it? Do you think you’ll keep your daughter on it for a while? Or do you eventually want to push toward a more standard diet? I know part of that depends on Spinraza and how well she’s able to consume regular food, but I was just curious.

    • #11932
      Michael Casten
      Participant

      Our daughter has been on this diet for many years and the plan is to keep her on it. We have switched to only having her participate in the feeding overnight. The pros are that she gets the nutrition that she needs and we know she’s getting it. She eats well by mouth but the diet ensures nutrition.

    • #11933
      DeAnn R
      Keymaster

      Curious, what types of benefits have you seen?  Diet was never even discussed when I was a kid, so it’s interesting to hear how it can be beneficial. Is it something a person can implement partially or is it an all or nothing type dietary thing?  I have a million questions, but I’ll start with those.

    • #11934
      Michael Casten
      Participant

      Benefits have included a safe weight gain, increased endurance, and a bit of strength. This diet can be partially or fully implemented. We implement partially as our daughter eats by mouth as well.

      • #11935
        Kevin Schaefer
        Keymaster

        Thanks for sharing. Yeah when I was a kid diets were discussed, but it seems like the amino acid diet has really grown in popularity in recent years. I’m glad it works for your daughter.

    • #11942
      DeAnn R
      Keymaster

      Where would someone even begin if they wanted to incorporate this into their diet?  Are there certain labs one would want to monitor?

    • #11974
      Michael Casten
      Participant

      DeAnn,

      I wrote an article on the Amino Acid Diet under “Columns” >> “Five Servings of Strength”…maybe that might help?!?

    • #11975
      Kevin Schaefer
      Keymaster

      DeAnn, here’s Michael’s column: https://smanewstoday.com/2018/05/09/sma-amino-acid-diet-benefits/

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