Perspectives from Lead Outreach Volunteer Sarah Diaz

We’d like to introduce you to Sarah Diaz, our new Lead Outreach Volunteer (above left with her mother, brother, sister and father). She will be representing our chapter at community events around the region. We asked Sarah if she’d tell us a little bit her of story and she graciously shared the impact ALS has made on her life and how she hopes to impact the lives of others.

My journey with ALS began with a lot of unknown and uncertainty, but now three years later I know for certain that I want to repay all the kindness shown to my family and me. I hope through my volunteering to give other families the same chance to enjoy the time that I so greatly appreciated. I hope to also cultivate a desire in others to keep fighting and one day find a cure!

In April of 2016, my family received earth shattering news that would alter our lives forever. After 9 months of tests, doctors, medications, and no answers we could finally put a name to the unknown. My dad was diagnosed with rapid progressing bulbar ALS. What started as a couple of eye twitches, quickly became garbled speech, the inability to walk, feeding tubes, and on April 10, 2018, the passing of my dad. I was devastated and confused. The two years were filled with so much uncertainty and unknown that I always felt like I was never standing on solid ground.

The ALS Association gave me the opportunity to have a little sense of normalcy and a chance to take a breath. As a nurse, it is a natural habit to turn off the emotion and be objective about a medical situation. I knew I did not want this for myself throughout this journey. Because of the ALS Association I was able to just be my dad’s daughter, instead of needing to be his nurse, social worker, chef, or secretary. It allowed my mom to be a wife and a mother instead of always having to be the coordinator and the organizer. Ultimately what they gave my family the most was the gift of time. We were able to take the time to just enjoy being with one another, knowing someone was there to pick up some of the pieces. This gift is my driving force for continuing to volunteer with the ALS Association. I want to pay this gift forward, in the hopes that other families are granted the same gift of time.

Volunteering with the ALS Association is my way of showing my gratitude for all that was provided to us and to keep fighting for a cure. I believe ALS takes so many things and the largest being time. I want to volunteer in order to help provide that time back in any way possible to others. To give another family the chance to take a breath, even if only for a second. I hope to be able to be the person picking up some of the pieces, so they too can just be wives, husbands, daughters or sons.

I believe ALS requires a village to cope with and I feel that with new connections comes strength. I hope through my volunteering with the St. Louis ALS Association Chapter I am able to help grow the ALS community here. I want to let others know there is someone out there who understands and maybe makes the unknown a bit less scary. I want to build connections so families can feel not so alone in this isolating journey.

If I can do even a tiny bit of this then I will feel as though I have started to repay all that was given to my family. I think this will also help me to always feel connected with my dad and his journey. By volunteering I am remembering and by remembering I am still fighting.

Thank you Sarah for sharing your story, and for making a difference in the lives of people with ALS and their families. If you are interested in becoming involved like Sarah and would like to learn more about the various volunteer opportunities available with our chapter, please visit our Volunteer Information page.

One thought on “Perspectives from Lead Outreach Volunteer Sarah Diaz”

  1. Thank you so much for sharing. My husband was just diagnosed in July of this year. I’m learning just how valuable the ALS Association will be to our family. What a devastating, horribly sad disease this is.


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