Sharon’s Story

Hi — I’m Sharon.

Also known as S.A.M (signed on the bottom of my pottery “Sharon Ann Marie”), Mrs. Sprangers (to my students at Wrightstown), Sharona (to friends in Texas and Wisconsin), Nanna (to my grandchildren) or Maaaaaaaa (to Boundary Waters friends and family).

I am the oldest of nine, raised to be very creative, and we were taught the skills of children raised on a farm. We worked hard and played even harder! It might seem we didn’t have a lot but we did because we had each other. My father taught us how to fish and burned the midnight oil every night, selflessly, for all of us. My mother taught us endurance and taught this perspective on life… “You’re never lost, you’re always on an adventure”. If something didn’t work right, our parents taught us to figure out how to fix it. Try it, and if it didn’t work right, try it again and again, until it worked. You could say we were a strong “lot”.

That brings me to the hardest “lot” our strong family has been given. Our dad passed away after a long fight with ALS in 1999, which tested all our caregiving and creative abilities. When my sister Peggy was diagnosed with ALS a few years later we found out that we have a specific gene, CHCHD10-R15L, which has been passed on through our family lineage. I feel our fate is to fix it. In our family you are either diagnosed with ALS or you are taking care of loved ones with ALS. It breaks my heart when one of my brothers or sisters are diagnosed with ALS. What breaks my heart even more, is when they have to tell their children they have a 50/50 chance to be afflicted with ALS as well. Why our family?

“God never promised us a smooth sailing, but HE promised us a safe landing” ACTS (27:1-44)

I go through waves of emotions…that I can’t do enough to help my brothers and sisters as I see them struggle though this disease. I struggle to find balance, but God steps in and says where I need to be. Luckily I have a strong support system in my husband, friends and family that allows me to give my time where it’s needed most.

Our family has worked hard to research different avenues in pursuit of slowing or eradicating this debilitating disease for the next generation. Our research for a cure as “NextGen ALS”, has led us to the doors of “Project ALS”, a non-profit organization that has the ability to identify and fund the most promising research that can slow down, stop, or potentially prevent ALS for future generations.

We ask that you will help us in this fight to cure Genetic ALS.

Sincerely,

Sharon, S.A.M, Mrs. Sprangers, Sharona, Nanna or Maaaaaaaaaaaaaaaa