Casey Saunders, Determined to “Drag Down ALS”

Casey Saunders

Non-profit organizations would not be able to do the work they do every day without the incredible generosity and support of the donors who support their mission. From our donors and sponsors to our families, friends and staff, The ALS Association is incredibly grateful for all those who are working with us to create a world without ALS.

Casey Saunders

One such person is the Association’s Director of Planned Giving, Casey Saunders, who works closely with donors who want to make a difference for the ALS community and provide hope for those fighting the disease. We recently asked Casey to share his story, why he’s passionate about fighting ALS and how his recent personal fundraiser is impacting people living with ALS and their families.

Please tell us a little about yourself and your background:
I grew up in Warwick, NY – a small town of farms, apples and cows about an hour upstate from New York City. It’s gorgeous in the Fall. I went through primary school and college, all in NY, and while in college, I interned in the fundraising field one summer in Washington DC. I fell in love with it, fell in love with DC, and two months after I graduated I found myself living in DC, working as a fundraiser. I’ve been here ever since, love living in DC, and love my profession.

Specifically, I love my fundraising field of planned giving. I have the honor of helping our donors maximize their impact while minimizing their taxes and turn their philanthropic nature into their philanthropic legacy. I get to help donors make what is often the largest gift they ever make to the cause that they care about most. It’s always really rewarding for me and gratifying for them to see the impact they are making in this fight.

What brought you to The ALS Association?
I came to the Association without any direct ALS connection. I came from the Cystic Fibrosis Foundation with an interest in planned gift fundraising for rare disease research organizations – exactly what I was doing at CFF. The Association provided opportunity for professional growth while staying on the medical research track for rare diseases – an easy cause to get behind.

Over my time with the Association now, especially being in such an external, donor-facing role, I’ve met many wonderful people in this fight and developed many meaningful relationships – it has all become personal.

You created a personal fundraiser online to raise money for the Association, Drag Down ALS. Tell us a little about that, why you decided to create it and how you chose your unique theme?
Before diving in, I want to note I have the privilege of working for an organization with a culture that not only accepts queerness in the workplace, but encourages me and others to be ourselves in every situation – there’s no need to hide who we are here. Little more can exemplify that than me creating a month-long fundraising campaign using famous drag queens. I had so many coworkers donate to my fundraiser, thank me for bringing queer culture into the workplace in such a direct way, and share messages of love, acceptance, and encouragement to keep doing what I’m doing.

Why? For me, it’s not only important for me to donate to my organization each year, but to also fundraise peer-to-peer for it each year. And more to the point, drag is fun! Drag queens are hilarious, (sometimes) gorgeous, attention-grabbing, and in the queer community – my community and friend group – very popular and perfect to use for the sake of a peer-to-peer fundraiser.

Drag down ALS

How? So, while thinking about what I could do that would be a special and fun fundraiser, I noticed a famous drag queen asking for donations to a nonprofit on her social media and I thought “How do I get her to do that for The ALS Association?” And so, I was trying to think about how to contact her. I ended up finding she was on Cameo – a social media platform connecting fans to their favorite celebrities – and thought “OK, I’ll see if she’ll do a Cameo video helping me fundraise for our DC/MD/VA walk team fundraiser.” That idea grew into a month-long campaign, releasing a video each week of popular surprise drag queens asking my community to help me fundraise. Thanks to the generosity of some coworkers, I was able to afford the Cameos and the month was a huge success!

What was your goal with the fundraiser and how much did it raise?
The goal was to come up with a fundraiser idea that would not only be fun for me but fun and creative for my peers.

I initially aimed to raise $1,500 and raised $3,600 from 40 donors! I knew my friend group would love and support my fundraiser, but seeing my coworkers, my family, my family’s friends, and even my queer coworkers’ friends and family all donating was so nice. The LGBTQ+ community is just so incredible and I’m so thankful for all the incredible allies I have around me.

What do you wish people knew about ALS and the community we serve?
I wish everyone knew how diverse our research portfolio is! We currently have 135 active research projects, across eleven countries, with $47 million committed to these projects. Those range from understanding the basic cellular-level mechanics of how ALS develops, to developing new assistive technologies for people living with ALS, to understanding ways to actually prevent ALS in the first place, and of course venture heavily into the actual therapeutic development. We are the largest public funder of ALS research worldwide and yet there are still so many more research opportunities out there that we don’t have the funds to support yet – we need more support now to continue funding such a strong, multi-pronged approach to tackling ALS from every angle.

How do you feel knowing you’re working every day to help fight this disease and make a difference in the lives of people impacted by ALS?
It’s my passion! Fundraising is truly my passion. It’s a blessing to have made a career out of it. And doing so for such incredible people facing such a rare, underfunded disease is super rewarding and inspiring for me. Even as the largest public funder of ALS research worldwide, we aren’t currently able to fund it all – the need for more funds is urgent. The more we can fund now, the more shots we’ll be able to take on goal, and the sooner we can improve lives of people living with ALS, and ultimately, the sooner we get to a cure. Funding today and ‘tomorrow’ is essential to achieving our life-saving mission.

Anything else you would like to add?
Happy Pride Month!

To continue to follow stories from people in the ALS community and learn more about the disease, subscribe to receive our weekly blogs in your inbox HERE or follow us at

Join the conversation. Please comment below.

12 + 1 =
Solve this simple math problem and enter the result. E.g. for 1+3, enter 4.
This question is for testing whether or not you are a human visitor and to prevent automated spam submissions.