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    • #18134
      Amanda
      Keymaster

      May is always a difficult month for me. My father, Donald R. Sifford, passed away from ALS on May 15th, 2013. His birthday is May 25th. It’s fitting that ALS Awareness month is in May each year (for me).  This provides me with a time to remember, post and advocate for ALS and pALS in support of my dad and everything he accomplished. My father served 20 years in the Navy and retired a Master Chief. He then spent another 20 years working for the DOD. He taught me that hard work and tenacity were vital. I miss him dearly, but I am so privileged that I had him for a role model and a father. My grandfather, Roy E. Sifford, passed from ALS on October 2, 1983.  I loved and admired that man, he was one of my biggest heros. He was the Sheriff for a while in a little town called Advance, MO. No one has ever made me feel as special as my grandfather did. My dad’s two sisters, my Aunt Linda and my Aunt Norma also had ALS. Both were gracious women with a flair for style.  My cousin, Jessica Gump, also passed more recently from ALS. She fought the hard fight for 16 years. In her last 16 years she became an advocate for ALS, raised money, raised awareness and even spoke to politician’s on Capitol Hill advocating for funding for research. Unfortunately my family has many more members who have passed from ALS, some as young as in their 20’s. We have a mutation on the SOD1 gene.  I will continue to advocate, volunteer for research, and do all that I can to help pALS have a better life, access to treatments and to fund research for a cure.  My family has inspired me in so many ways and although I miss each of them, I am blessed to be a part of the Sifford Family.

    • #18140
      Nancy Gilkeson
      Participant

      God bless you, richly, Amanda for your loving kindness, your advocacy, & shared memories…..all of these give me a wider, richer view of life!     I’m glad to “meet” your family and thankful you shared this.

      Nancy

      • #18144
        Amanda
        Keymaster

        Thank you Nancy!  I am at a point in life where I recognize how important we all are, and how blessed I have been despite having the SOD1 mutation. I believe in the area of familial ALS they are making huge strides, and are even in clinical trials for treatments that stop the progression. Recently, I haven’t heard about how it is going and what the results are showing. They have also been able to identify a protein that is elevated just before the onset of SOD1 mutation related ALS.  I think they are watching my blood work closely and monitoring this protein in the pre-fALS study I have been participating in.  I go back on April 28th to spend a few days at the hospital in Miami for all those fun tests 🙂 .  I’m hoping to learn more while I am there. I’ll post how things go.

        • This reply was modified 2 months, 3 weeks ago by Amanda.
        • #18151
          Nancy Gilkeson
          Participant

          Yes, do, Amanda.  Meanwhile, an enlarging crowd of  witnesses (I am one) are cheering for you and all others who are  working for that breakthrough & advancement for that protective & preventative answer.

      • #19153
        Gigi
        Participant

        Amanda

        Thank you for sharing your family’s story.  I too have the SOD1 gene and am in a Clinical Trial.  Amazingly noone else in my very large extended family at this time is showing any symptoms.  Some have debated being tested due to new research in presymptomatic trials.  I would love to reach out to you to talk if you would be willing but am not sure how to do that.

        Barb

    • #18950
      Jennifer Zink
      Participant

      In loving memory of my second cousin, once removed, Susan, who died quickly from ALS.

      • #19011
        Amanda
        Keymaster

        Jennifer,

        I’m sorry for your family’s loss. I hope you have fond memories of your cousin!

    • #18959
      Marianne Opilla
      Participant

      Im sorry your family has this burden and you have lost many loved ones to ALS.  But you are charting a course for your family’s future generations to overcome and reverse the “curse”.  Stay positive during the challenging research demands!  You got this!!!

       

    • #18967
      Jennifer Zink
      Participant

      Thank you, Marianne, for caring!

    • #19013
      Kathy stitz
      Participant

      Hi Jennifer,

      I’m so sorry for your loss.  ALS is such a horrible condition and it just makes me so sad that pALS never get better and there’s not much that can be done for all of us who are suffering with this.

    • #19128
      Jennifer Zink
      Participant

      Thank you. Amanda and Kathy.

    • #19479
      Lisa Bonahoom
      Participant

      In loving memory of my sister, Carol Ann Cross. She passed away a little over a month ago.

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