ALS Ice Bucket Challenge Progress
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I have been participating in events supporting the Golden West Chapter of The ALS Association for several years now, starting with the Walk to Defeat ALS back in 2013. This year, I decided to join the first ever Hike to Defeat ALS. With June being National Trails Month and reflecting on Father’s Day, I thought now would be the perfect time to share my story with all of you.

My dad holding me in 1985,
when he became a father

I lost my dad to ALS in May of 2000. He was 48 years young and I was just 15. In the fall of 1997, my dad, Dave Scott, began to show symptoms of ALS (limping, tripping, etc.). After a year of negative diagnostic tests, the doctors were stumped, but my parents already had a feeling that they knew what it was. You see, in January of 1985, my Grandmother, Wilma, passed away from ALS, so my parents knew the signs. My Grandmother passed before I was born, so when my dad was diagnosed, I had no idea what ALS was or what it meant for my family.

I went about my life as a busy teen, watching my dad deteriorate from the sidelines while my mom worked around the clock to care for him. I didn’t understand what was happening to our family, and most times, I didn’t know what to think or how to feel about any of it. My dad loved his hobbies -- rocking out on his guitar, gardening, grilling, watching baseball and doing any kind of fun activity with family and friends. When he could no longer do these things, it was devastating.

When my dad passed just two years later, I was both heartbroken and relieved. It was over.  But this is not where my story ends. This was only the beginning.

My dad doing what he loved,
playing guitar (1997)

No more than 6 years later, we found out that my dad’s younger brother had ALS. My heart sank -- not only for his family now having to go through what we went through, but because I was beginning to think that we could in fact have familial ALS. I had been hoping all along that it was just a coincidence with my Grandmother and Father, but now, here is my uncle, fighting for his life. I later discovered that my father’s last living brother had also died because of the disease.

After years of sleepless nights, thinking and wondering about all of the “what ifs” associated with my family and ALS, the 2014 Ice Bucket Challenge began.

Finally, the world would see and understand what this devastating disease was and we could come together and raise money to fight it. It was that year that I created team Super Dave, in memory of my dad (who had given himself the nickname “Super Dave”). Coming to terms with the fact that ALS may not just be a part of my past, but also a part of my future, I wanted to do as much as I could to raise money for treatments and cures.

A few years later, I had done a DNA test, and I received a message in my account saying, “My name is Ricki. I believe your grandmother, Wilma, and my grandmother were sisters. I have a lot of info.” In speaking with my second cousin, Ricki, I found that her grandmother had passed from frontotemporal dementia, and her father and two uncles (my dad’s first cousins) had also passed from ALS. Complete shock.

There really are no words to describe the feelings and emotions when getting the news that your family has familial ALS, which accounts for about 10% of all cases of ALS.
“Who is next?” is what runs through the minds of my cousins, my brother, and mine. It never really gets easier, you just become more aware, more accepting, more hopeful as organizations like the Golden West Chapter make advances. Raising money to find treatments, and ultimately cures, is important to me because there is a lot at stake -- my future, my kids’ futures, my entire family’s future. Join me in raising these critically needed funds so no other families have to go through what mine has.

I hike in memory of my dad, my uncles, cousins, and all of your fathers who fought or are currently fighting ALS. Together, we will defeat this disease.

Rachel Hensley
Team Captain, Super Dave

Rachel and family