Lindsay Litterini: Why I am an ALS Volunteer

Lindsay's family

In recognition of National Volunteer Month, we are shining a spotlight on some of The ALS Association’s amazing, dedicated volunteers and highlighting the incredible work they are doing to support our mission.

Volunteers are the backbone of many non-profit organizations, and The ALS Association is no exception. Without the hard work and commitment of individuals around the country who graciously give their time to help support the ALS community, we would not be able to do what we do every day.

We recently caught up with Lindsay Litterini, volunteer and board member for The ALS Association Western Pennsylvania Chapter, to learn more about her personal connection to ALS and her passion to join the fight against the disease.

This is what she had to say.

Can you tell us about yourself and your personal connection to ALS?
I live in Pittsburgh, Pennsylvania with my husband Chris. We recently bought our new home, and thankfully we now live very close to my mom. We have three cats and a rescue dog on the way, whom we spend a lot of our free time with. My sister lives in Richmond with her husband and two daughters. I work for a local sports team in a role that combines my greatest passions: sports, working with people, and giving back to the Pittsburgh community.

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Lindsay and her dad

My dad, Scott Hollinger, is my connection to ALS. Diagnosed in March 2019, the first few months were dedicated to sharing the news with family and friends, and we quickly realized how important our family’s involvement with The ALS Association would be throughout his ALS journey. In August that year, my dad asked me to use my fundraising and marketing background to start a Walk to Defeat ALS® team, Scooter’s Bunch, in his honor. Being the most practical man I knew, this request did not surprise me.

He passed away in August 2021 and while his living with ALS was a notable time in our lives, it is not what we want anyone to remember most. Instead, we choose to remember fondly his selflessness demonstrated in everything he did. His journey with ALS was exactly that, selfless, as he made decisions based on how it would impact everyone around him while never once complaining about his circumstances. He instead chose to live with grace and dignity and for that, we are so very proud of him.

Why do you choose to volunteer for The ALS Association?
Volunteering for The ALS Association was something I had originally considered. By asking me to start a walk team, my dad gave me a purpose in his journey, and I am so grateful he did. The role of being a captain transitioned me into a variety of roles at the Association’s Western PA Chapter. Through my involvement in fundraising events, seminars, support groups, and planning committees, I was prepared to provide so much more for my dad, and my family, than I would have without volunteering.

At times, my dad’s progression seemed to happen quickly, and it was necessary to pivot to support him and his needs. By remaining actively engaged in the Chapter and the support network it had created for our family, I was able to identify solutions for everyday challenges more easily than if we were navigating ALS in isolation. I volunteer so I can continue to provide support to those living with ALS because outside of our closest loved ones, the best support for our family often came from other families who had been impacted by the disease.

Can you describe the things you have done as a volunteer?
Since August 2019, we have participated in the Pittsburgh Walk to Defeat ALS® with our team, Scooter’s Bunch, raising more than $75,000 to date. Since 2020, I have been serving on the Pittsburgh Walk planning committee as the marketing and team development lead. While I am still involved in this year’s event planning, my role is a little less involved as it has been challenging for me to maintain the same level of intensity while navigating my own grief.

My family has participated in resource seminars, caregiver support groups and the Chapter’s caregiver retreat. Our fundraising team has supported the Community Cares Auction by securing various donations for the auction and I was honored to serve as the auction’s co-host with Chapter staff in 2021. I have also participated in digital advocacy efforts through social media and by mailing letters each year.

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Lindsay

As a newer member of the board of directors, I continue to help ensure the Chapter continues to serve the ALS community here in Western PA. What we have here is what we consider a family. We all say that it is not a group you ever want to be a part of, but if ALS impacts your family, this is exactly the group you want to be a part of.

What started out captaining a walk team, has become so much more and I believe it’s because an ALS diagnosis for your loved one changes you forever. For me, it is my responsibility to continue my efforts in my dad’s memory to help find the cure, and always help improve the life of someone living with ALS.

What do you wish people knew about ALS?
While one of my greatest wishes is that nobody ever had to know someone living with ALS or see what it looked like, I selfishly wish more people knew someone living with the disease and witnessed firsthand what it does to a person. Unless you have seen this disease firsthand, you cannot understand the devastating impact on the person living with the disease and everyone around them. I truly believe that if more people understood the disease and its power, they too would get involved long before it impacted their loved one.

From your perspective, what’s the best way that people can support families impacted by ALS?
ALS is an incredibly isolating disease due to its nature and unlike most other diseases, the different stages of grief set in immediately because it is fatal. My number one piece of advice to anyone who has a loved one living with ALS, be there for the family. And I mean, really be there. The family navigates many challenges that at times leave them physically and emotionally exhausted. Continue to stay in touch, invite them to participate in social events, plan a visit or drop off a meal, and offer to provide respite to the primary caregivers. By staying in touch, you surround the family with the love and care they need to continue providing the best care possible to the person living with ALS.

What would you tell someone who is thinking about donating or volunteering with The ALS Association?
To anyone considering donating or volunteering with The ALS Association, I would say thank you! Please do not wait until ALS impacts someone you know or love. If you are interested in giving the gift of your time, you will be helping fundraise and advocate for treatments and a cure—providing hope to families living with ALS, today and in the future.

Special thanks to Lindsay Litterini and the team at The ALS Association Western Pennsylvania Chapter for allowing us to share her inspiring story of her fight for the ALS community.

To continue to follow stories from people in the ALS community and to learn more about the disease, follow our blog at als.org/blog.

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