Each May during ALS Awareness Month, we come together to shine a light on people living with ALS. People like Shelby, who, even as she faces the challenges of living with the disease, is finding ways to advocate for change, not just for herself, but the entire ALS community.

Shelby Kinsey graduated from college in December 2022 and took a job working at a bank while she figured out what she “wanted to be when she grew up.” Ironically, she fell in love with the industry and decided to pursue a master’s degree in finance. Until ALS came along.

Shelby had a great childhood growing up in Texas with her parents and younger brother, Logan. “Growing up I loved anything to do with the outdoors,” she said. “I played softball from the time I was 4 years old until I graduated high school. I raised and showed livestock and was very active in the FFA. When I graduated high school, I was very excited to attend Texas Tech University where I majored in Animal Science with a minor in Agribusiness.” 

Shelby was working as a server during college, and one night she fell as she was carrying multiple trays. “I tried to go up a set of steps and fell,” she recalls. “I fell pretty hard on my knee and we thought I had jammed my leg up into my hip because for the next few months, I kept randomly falling down.”

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She saw many different doctors and specialists, undergoing test after test, a very common occurrence when it comes to diagnosing ALS. “I had so many tests done, I told my mom I was starting to feel like a pin cushion,” she said.

“I decided to get genetic testing because I knew that we had familial ALS, and I intuitively knew that it was a possibility that with my symptoms, I could have ALS,” Shelby said. “My great-aunt, Anne, was diagnosed with ALS 18 years ago and passed away within 7 months of symptom onset. My great-grandmother began exhibiting symptoms in her early 80's and passed away before she was diagnosed. I am told that my great-great-grandfather had the same symptoms along with a few great cousins, but I do not have much information on those cases.”  

Just 22 years old, Shelby was diagnosed on January 17 of this year with SOD1-ALS, a rare genetic form typically associated with younger age of onset and shorter survival. In other words, SOD1-ALS is a particularly aggressive form of an already rare and devastating disease.

But for Shelby and others living with SOD1-ALS, there is hope in the form of a newly approved treatment. On April 25, 2023, the FDA approved Qalsody (tofersen) for the treatment of SOD1-ALS under the accelerated approval pathway. Unfortunately, the drug is expensive and difficult to access.

“We began the process of finding a clinic that would administer the drug, but we were told our insurance, Blue Cross Blue Shield of Texas (BCBS), is the only insurance denying the treatment because they found it to be medically unnecessary,” she said. “I am now about to start my third loading dose, but because of the delay in getting the treatment, my right arm has now stopped working, I can no longer support myself with my left leg, my left arm has become very weak, and my breathing has been affected.”

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But Shelby still has her voice, and she is using it for not just herself, but others like her. “If I am going to have a disease like ALS, I want it to mean something and I want to be able to help as many people as I can to not have to fight like I have,” she said. “With this type of disease, if there is any kind of treatment, any possibility of slowing progression, it should be started immediately, not months or years after diagnosis.”

So, Shelby and her family are advocating for people with SOD1-ALS to have access to Qalsody regardless of where they live, or who their insurance provider is. In fact, she and her mother will also be joining the ALS community at ALS Nexus to speak about her experience, the discrimination she faced from her insurance carrier, and how we can join together to remove barriers for Shelby and everyone affected by genetic forms of the disease.

“My mom has always told me that my biggest advocate is me! If I am not going to stand up for myself, then how can I expect other people to stand up and be behind me?” Shelby said. “ALS is a horrible disease, but if you look around you, you can find the blessings in everything,” she said. “I have ALS, ALS does not have me!”

Thank you, Shelby, for allowing us to share your inspiring story and for all the amazing work you are doing to advocate for yourself and everyone else in the ALS community.

Please join us this month and show people living with ALS and their families they are not alone. Learn more about ALS and find out how you can get involved HERE.

Learn more about ALS Nexus and register TODAY!

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