Shelby Kinsey: “I have ALS, ALS does not have me!”

Shelby and a group of loved ones in jerseys

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.” 

“The first time I noticed something was not right was in February of last year.”

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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Shelby and her mom

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.

“When I was diagnosed in January, I still had all functions, but for my right leg and the upper part of my right arm. We were told there was a treatment (Qalsody) that could significantly slow or even halt the progression of the disease.”

“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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Shelby and loved ones at a sports event

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!

To continue to follow stories about people living with ALS in the community and learn more about the disease, subscribe to receive our weekly blogs in your inbox HERE or follow us at als.org/blog.

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Comments

Submitted by: William K. on Fri, 05/03/2024

We are praying for Shelby and that she gets the medication and treatment she needs. May the Lord give you strength!!

Submitted by: Crystal S. on Sat, 05/04/2024

Shelby as a fellow ALS Patient, I thank you for utilizing your voice to speak up and speak out advocating no only for the equity you should have with your insurance carrier, and for your willingness to speak for those of us whose authentic voices, are disappearing due to ALS.

Submitted by: Delma P. on Mon, 05/06/2024

Hi Shelby thank you for sharing your story...we will be praying for you for we to are in this fight my Husband Craig has Als he is 72yrs we are going 3yrs since diagnosis but we know he had 1year before...we live in NWA but our home is Lubbock Texas we grew up there and had kids go to Texas Tech. So your story touch me so much ! Take care love..Craig and Delma Peterson

Submitted by: Kyle L. on Wed, 05/15/2024

Hi Shelby, thank you for sharing your story. Your story touched my heart and hits really close to home. First of all…You are doing awesome in your journey and fight against ALS. It’s great that you have such family support, that’s really important. My older sister Tonya Monden was diagnosed with ALS in 2015 and fought hard until February 2023. Tonya had taught school for over 30 years in Lake Dallas, TX and received her degree from Texas Tech. She was a true Red Raider!! Tonya was always surrounded by friends and our family helped with her care. My older brother was financially able to pay for anything she needed to help her quality of life better and during the pandemic in 2020 I started as her main caregiver until 2023. I managed four other caregivers, so Tonya had the best of care. ❤️ Tonya received a trach in 2016 and received all nutrition and meds through a feeding tube. This was a family decision to hopefully prolong Tonya’s life to enjoy her grandkids and other upcoming family events. We had a handicap van and a mobile chair for her and Tonya and I took trips everywhere, including several to Lubbock for our niece and nephew Tech graduations (my brothers kids). Tonya and my brother loved Tech and both attended Tech at the same time in the 80’s and actually have bricks at Tech with their names on them. My brother just recently had the Tech Rawls School of Accounting named after him, a great honor. After losing her speech, Tonya was able to communicate with her eyes by use of a computer. First she used the EyeGaze and then later received a Tobi system. Tonya loved to get pedicures and we would all go as a family monthly and get them. Sometimes we would have 10-15 family members lined up getting painted toes. It was great!! The main thing is, don’t let ALS win in taking away your life’s dreams. My sister enjoyed every day of her life and we did everything we could to make it happen. We got her up and dressed everyday. Tonya was always a dresser and the girls were always great to get her makeup on and the jewelry she wanted to wear. Tonya always enjoyed the ALS support walks and we usually had one of the largest groups walking with her. I know I’ve said to much, but just want you to know that you are not alone in this fight. I’m praying for you and your family and hopefull for them to find a cure someday for ALS.
Keep up the FIGHT!
Love
Kyle Lyons

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