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    Posted by Amanda on February 14, 2022 at 9:59 am

    Good morning,

    Many of you have been a part of our online community for several years and have gotten to know Dagmar and myself.  I thought I would give you a little background information.  Dagmar and I live in different parts of the country and we communicate often via chat, email and social media.  We both have different experiences with ALS and how it has impacted our lives. We do our best to give you an idea of that in our welcome messages. Sometimes, I think it is obvious that our experiences are vastly different based on our perceptions of posts, comments, movies, articles and even ALS Awareness Month. Dagmar and I have a great mutual respect for one another both professionally and personally.  I think she is amazing and she inspires me all the time!!  I think we make a great team.

    I’m a school psychologist by day. I’ve worked in the mental health field for decades in various capacities, but my favorite has been working with and helping disabled youth in schools get the best education and opportunities possible. I have several degrees and certifications; however, I believe life experience and life learning is far more valuable in most cases!!!

    My first career was in communications/fundraising for drug abuse prevention and domestic violence prevention. That eventually let me into counseling and to being a psychologist.

    I grew up a Navy brat and moved around as a child.  I value and respect Veterans!!  I am grateful for all of the sacrifices they have made for the United States.  I continued to move and explore as an adult.  I have a wanderlust that I can’t seem to cure. I’ve lived on the east coast, Washington D.C., Las Vegas, New Orleans, Pensacola area, and currently in the Fort Myers area.  One of the reasons I moved here was to be closer to the University of Miami Research facility; however, I have always wanted to live in a tropical environment.

    In regards to ALS, I have been testing for pre-fALS study since 2011. I tested positive for the SOD1 (I113T). I’ve had severe cramping and fasciculations for decades that seem to come and go. Oddly enough, there seems to be some suspicion (according to the study I’m in) that the cramping and problems in my abdomen may be related to the specific genetic mutation that I have, but that is still being researched. Many of my family members have experienced similar symptoms. My mutation is association with a slow progression and this often makes it difficult and slow to diagnose.  I’ve also been told that since my symptoms come and go, and the progression is odd, not following any typical patterns, that makes things challenging as well.  So far, all I have are cramping and fasciculations – no wasting or loss of use.

    My family has lost 15 family members who had ALS. Some also had other medical conditions that complicated their health.

    I have volunteered for 3 research studies. One looked at my family because of the crazy number of cases and how dominate the mutation runs.  The last is a longitudinal study, the pre-fALS (pre familial ALS) study.

    I feel honored to work for Bio News, ALS News Today because it helps me keep up with a community I love and respect.  I continue to learn every day and that is a blessing.

    If anyone ever has any questions about my family or the research, please let me know. I’d be happy to share what I have learned.

    Happy Day!


    Amanda replied 2 years, 3 months ago 1 Member · 0 Replies
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