• Pre fALS study

    Posted by Amanda on October 10, 2019 at 9:33 pm

    Although I lost my grandfather to ALS in the early 80’s, I didn’t know much about the disease until around 2005. In early 2004, I found out that my cousin, Jessica, had been diagnosed. She was much younger than most pALS.  Shortly after that, her mother (my father’s sister) was diagnosed with ALS.  It was around that time the I learned that many of my grandfather’s siblings also passed from ALS and then my father started showing symptoms. This was around the time that myself and two cousins got involved in the pre fALS study.

    I was overwhelmed with information, and very scared. Getting involved in the study helped me to learn about ALS, and over the past decade I have seen many advances. The doctor always explains the latest developments. My case manager, Danielle, has always taken the time to help me understand and calm my nerves when needed.  All of the peopel involved in this study are a great support and always provide information. The study https://www.als-research.org/research/pre-fals/ has had a tremendous impact on my life. This is the third study I’ve volunteered for and the only longitudinal study.

    What has been your best source of information and support?

    Amanda replied 4 years, 9 months ago 1 Member · 0 Replies
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