I am Kate. I am in my thirties. I am a strong, independent woman. And I was recently diagnosed with ALS.
Growing up, I imagined myself as a superhero, like Wonder Woman or She-Ra. My purpose in life was to rid the world of evil. And though I imagined my superhero future as a busy one, I knew I would still want to make time to marry the man of my dreams, start a family together, and live in a comfortable home with a white picket fence.
Over the past 2-3 years, I noticed changes in my body that were slowly altering the way I performed everyday tasks. I spent my days hiding my physical shortcomings, rather than seeking medical advice or evaluation. But my symptoms became more apparent at work. It was the day my boss had to assist me with a simple task that I knew I needed to investigate further.
The months that followed included endless medical appointments and examinations, and eventually, I was handed an ALS diagnosis.
It was a very dark time. I started to grieve the loss of the future I dreamt about in my childhood: my white picket fence would have to accommodate a wheelchair ramp; marrying the man of my dreams would no longer mean forever, but instead just 2-5 years; holding my baby in my arms would not be possible, considering that I was already struggling to hold a cup of coffee.
A good friend suggested I look into the work of the ALS Therapy Development Institute (ALS TDI), and in July, we toured their labs in Cambridge, MA. I saw scientists and technology working nonstop to find some way to slow, or eventually even cure, this awful disease. I learned about the progress they have made this year because of the generosity of their supporters: AT-1501, the most promising treatment ever tested at ALS TDI, will be in humans before 2018 is out, and they are testing other compounds right now, too, that may be game changers in treating ALS.
The team at ALS TDI not only gave me a sense of hope, they pulled me back into the present. They woke me up in time to marry my prince charming and travel for three weeks on an amazing honeymoon. They continue to provide hope and support every day, when they show up to fight the battle that I was unwillingly tossed into. Now my superhero powers are laser-focused on helping raise money for their groundbreaking research. This disease is not incurable, just underfunded. With our superpowers combined, we can end ALS.