Each year, the Association’s Hero Awards recognize special individuals in the ALS community who have made a significant impact for those living with the disease. Their stories of courage and determination in the face of unimaginable adversity are a reminder that heroes aren’t born, but made from the choice to lean into challenges and commit to the greater good.
Katie Adams knew before the doctors. An occupational therapist and rehab manager by trade, she knew early on how her symptoms that had begun in July of 2021 correlated with ALS. Doing what she had done for so many of her patients before, she logged and tracked her symptoms diligently.
“I even had facts to support my decline such as my grip strength scores and fine motor coordination testing,” Katie said. “Even with all of this knowledge and information I was able to give a local neurologist, it wasn’t until I finally got to a doctor at Vanderbilt in Nashville, Tennessee, that I actually got on the right track to getting the correct diagnosis.”
Katie says she actually felt a sense of relief in October of 2022 when she finally received her formal diagnosis. She was just 39 years old and a parent to two young daughters, but for her, the diagnosis gave her a sense of purpose.
“I wasn’t sure how I was going to help or what it would look like,” Katie said, “but then it just landed in my lap.” After her diagnosis, she discovered that because of the current law in her home state of Kentucky, she did not have an option to purchase affordable Medigap insurance, the type of insurance needed to help cover the 20% Medicare does not cover. To cover these costs, her only option was a Medicare advantage plan.
The limitations and fundamental unfairness of the insurance coverage available to her became clear in just a few months when her insurance company denied her very first claim: preauthorization of her power wheelchair.
“Even knowing the history of these Medicare advantage plans, I was still shocked because how could they deny someone with such a serious illness such a vital piece of medical equipment?” Katie said.
Katie knew this wasn’t right, not just for her, but for everyone in the state who faced the same barriers to getting the equipment and care they needed. So, she took action. Using her voice while she still could, she reached out to the ALS Association and offered to share her story with legislators in Kentucky. Soon, she was testifying in front of Kentucky’s Health Senate Committee about why this law in Kentucky needed to be changed.
“I simply told my story and the difficulties I had to face already dealing with getting necessary equipment and basic needs met on top of having a fatal illness,” Katie said. “I was honestly very surprised at how impactful my testimony was. It’s amazing how having a fatal illness brings so much more volume to your voice.”
How impactful was her testimony? The panel voted unanimously to change the law in question. The state senate soon followed, and the governor signed it into law.
Katie continues to advocate for the ALS community, and she is not doing it alone. Her whole family has made advocacy and fundraising for ALS a nearly full-time job. Her daughters are constantly fundraising in their community by holding bake sales at their schools or events at local restaurants.
Katie’s youngest daughter read her acceptance speech for her at the Hero’s Award presentation at our ALS Nexus conference recently, where she thanked all the ALS heroes out there, and reminded us that everyone, everywhere in the ALS community is family.
“I get an almost instant connection with anyone I meet who is living with ALS and their families. There's just something about meeting people who know exactly what you are going through. Everyone I have ever met who is living with ALS is the nicest, most selfless person,” she said.
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