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  • It is Important to Volunteer

    Posted by Amanda on June 4, 2019 at 9:24 pm

    I advocate for ALS research! I talk to my friends about ALS. I post things about ALS on FB and other forms of social media, I donate to various ALS events/organizations and I participate in medical research. It is a very personal cause to me. I’ve had several people ask me what kind of research I volunteer for;  why I do; and what kind of tests are conducted the two days I am at the University.

    WHAT –  The “what” is hard to explain because there are so many factors involved in ALS research. I’ve volunteered for several research studies.

    WHY – The “Why”… the simplest answer is that I feel that I am in a unique position to contribute because I have the genetic mutation and a significant family history of ALS. My family has lost many, many family members to this disease. I explain that some ALS cases can be linked to genetics and in my family the genetic mutation is dominant.

    TESTS – The study I’ve been involved with for years is a longitudinal study that focuses on collecting data on biomarkers.  Because I have the SOD1 genetic mutation and a significant family history of ALS, and a high probability of being diagnosed with ALS at some point, the research team can conduct test, compare the results from each visit and possibly identify changes in biomarkers associated with ALS long before it is typically diagnosed. (I’m one of many participants including several of my cousins).

    I believe the tests conducted are similar if not the same as what are used when  ALS is being considered as a diagnoses. Every year I travel to the University of Miami for two days of testing. One day is spent conducting medical tests such as:

    • Electromyography (EMG)
    • Nerve conduction velocity (NCV)
    • Magnetic resonance imaging (MRI)
    • Blood and urine tests

    There are other tests that I cannot recall the names of, but I can say that many of the tests include a lot of needles and electrical currents. This is definitely not a pleasant experience, but it is rewarding just the same. To be honest, It is a terrifying experience every year when I go. They have also started conducting remote visits quarterly with blood, urine and breathing tests. They also update medical and lifestyle information.

    The other day is spent meeting with psychologist, taking cognitive test, completing lifestyle surveys, symptom questionnaires, completing Q motor testing for fine motor skills, among other things. The visit ends with a conference with Dr. Benatar and we discuss the symptoms (I’ve had symptoms for years, but no diagnoses) and the results of the tests.

    The University also has a program that allows people to donate their brain (when they are deceased of course) for medical research. I plan on registering for this and I can specified that my donation is only to be used for ALS research.

    I believe that it is important to volunteer and contribute if you are in a position to help further a cause. For me, there was never a question of “would I participate” in ALS research. I didn’t feel like it was a choice. It is just something I do because I can, I should, I’m compelled. I am motivated by the many discoveries and advances over the past ten years. I am motivated to think where we may be a decade from now. Will there be a cure? Can they stop the progression after the onset of ALS? Will my younger cousins never have to think about getting ALS?

    Are there any fALS in our membership? If  you have a genetic mutation or if you are a pALS would you volunteer if you had the opportunity? What kind of research would you be willing to participate in?

    replied 4 years, 10 months ago 1 Member · 0 Replies
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