As we officially enter into September, we can’t help but look back at this month and compare it to August 2014. This August was a busy month filled with events, not unlike past Augusts. While our social media pages were less inundated with videos of people taking the challenge, many families are still feeling the impact of this viral sensation. We continue to hear stories of what this means to people even three years later. Sabrina Jones is one such person and here she reflects on where she was in August 2014 and the journey her family has been on since.
Looking back at August 2014… One of my friends challenged me to do the Ice bucket Challenge. I’m not sure if they’re really a friend, though, since I was about 36 weeks pregnant! But, like a champ, I rocked the Challenge–not just once, but twice since my husband “forgot” to record the first bucket! At that time, I had no real idea what ALS was or why it mattered. “The Challenge” was something fun my friends challenged me to do, and I couldn’t wait to donate and challenge others! To be honest, looking back on that time in life, it was nice having no clue of what ALS is and does.
This past September 2016, my mother, Pattie Hamlin, was diagnosed with ALS after having some symptoms for about a year. This was a terrifying time for my family. We were all now forced to learn and know what ALS is.
After about a month or so of living in what felt like a deep dark lonely hole, my mother decided to reach out and be an advocate for ALS. Her first order of business was to help advocate for other ALS patients by encouraging others in our state to write to their congressman. My mother went above and beyond and collected about 3,000 signed letters!! She’s also helped get votes out so our Nokomis School District would win a Holiday Mannequin Challenge that got us $50,000 from GivIt that was split between ALS research and our hometown school district, Nokomis School District. My dad, Lester Hamlin, and mother also went to Washington, DC to again advocate for ALS patients’ needs. After that, they came home to lead about 150 family members, friends, and coworkers in the Walk to Defeat ALS in Springfield, IL. Our amazing team, Pattie’s Posse, was able to raise and donate $39,735. I’m sure I’ve left something out because it’s been a whirlwind!
Thanks to all the hard work of the many people who participated in the Ice Bucket Challenge and who also continue to advocate for ALS patients, a new drug is being released this month for ALS patients. This isn’t a cure, but it’s giving us a small glimpse of light at the end of the tunnel–to someday conquer this disease!
The diagnosis of ALS isn’t something we’d ever imagined. However, when life gave my mom lemons… she has turned around and made the best lemonade she knows how!