May is ALS Awareness Month and the ALS Therapy Development Institute (ALS TDI) asked community members to share the importance of awareness and need for treatments in their own words.
I’m lucky to be here writing this letter with one knuckle on my right hand.
I was diagnosed with ALS in July 2007 when I was 21 years old. After graduating from Middlebury College the following spring, I returned home to Piedmont, CA unsure of my future. Since then, two of the biggest parts of my life have become coaching high school tennis and fundraising for ALS TDI.
My family and I learned about ALS TDI shortly after my diagnosis. It gave us hope to hear about a lab full of scientists solely dedicated to finding effective treatments for ALS. We wanted to help.
We held our first fundraiser in 2008, and we were nervous to ask people for money. But when we asked, people helped. We were blown away by the generosity of our family and friends! What we thought would be one event turned into 12 years of fundraising.
I am so grateful and amazed by how many people continue to generously donate, volunteer, and show up to our events. My fight has become my family’s fight and our friends’ fight and our community’s fight.
I feel as passionate about ALS TDI now as I did over 12 years ago. ALS TDI is the first nonprofit biotech in any disease to invent a potential treatment in their lab and bring it through FDA review and into clinical trial. This is an amazing accomplishment and shows that ALS TDI’s model works. But ALS is a complex disease, and it will take multiple treatments to help every person with ALS.
My family will continue to do everything we can to support ALS TDI’s research. But ending ALS will require many more families and individuals to ask their friends, families, and networks to help.
In a disease that can feel so hopeless, fundraising for ALS TDI has given me and my family a way to fight back. It has given our lives purpose. People want to help. They are waiting for you to ask.
With Love and Gratitude,
If you're interested in fundraising to support ALS TDI, you can learn more here.