🔒Fighting ALS, $1,000 at a time

Following her sister’s death from ALS in 2015, Katie Benison-Camell decided to start a foundation to provide relief for families fighting the disease. The foundation has grown every year and will host its inaugural gala on April 3.

Tell me about your sister.

My sister, Mary Beth, over a 15-year period went through various illnesses. She overcame having a brain tumor in 1999. In 2004, she was diagnosed with breast cancer. She was very determined to fight through everything. It was very inspiring.

After she went through that, she then decided to follow her passion and become a certified pastry chef. In 2011, she opened up her own business: CocoBeni Confections in Northborough.

But in 2014, she was having issues and was diagnosed with mesothelioma, a terminal form of lung cancer where your life expectancy is five years. She was determined to beat it. Yet, right before her surgery, she was told they thought she had ALS. She was officially diagnosed with ALS that November.

She passed away on May 3, 2015.

What inspired you to start a foundation?

She was a very spiritual and strong person. She always said she was grateful for all the family and friends who came to support her, but she thought about the people who might be going through the same thing, who didn’t have the same supports. She wanted to help them.

She and I talked about it, but we never got going because her own disease was progressing. I turned the grief I had into something where I could find meaning.

What was the beginning like?

I received 501c3 nonprofit status in February 2016, but I was pregnant with our third child at the time, so I didn’t have a kickoff event until October 2016.

I had to work hard to spread awareness about the foundation’s existence, where I wanted to help families pay for a household bill, or help with a medical equipment or service not covered by insurance. ALS is such a devastating and expensive disease for the whole family. My goal was to relieve a little bit of that.

When I was initially starting out, I modeled the Joe Andruzzi Foundation, which is a similar organization for people fighting cancer. Someone who helped me out was Mary Ellen Wessell, who went to high school with my sister and is executive director of the Children's Smile Coalition in Worcester. She met me for coffee and helped me with the 501c3 filling.

About 90% of the 104 grants I’ve given out went to ALS patients and their families. They typically receive $1,000, and I’ve given out just over $97,000 total.

How do you raise money?

The first event I had was a 5K. I’ve organized a hockey game with the Worcester Fire Department and had smaller events like a paint night, a spin-a-thon at Worcester Fitness, and Bravehearts games. I had 14 people who ran the Falmouth Road Race for the foundation.

My first year, I raised $22,000. In 2017, it grew to $49,000, and then $72,000 in 2018. Last year, we raised almost $80,000.

The big upcoming event for 2020 is my first-ever gala, called The Gala for Love.

What are your goals for the gala?

If I could raise $50,000, that would be wonderful. It is a lot of work, but I’m lucky to have a strong group of people come together as a committee. They are guiding me in areas I don’t know very well.

At the gala, we are honoring Dr. Robert Brown from UMass Medical School with the first-ever MBB Award of Excellence, for the research he is doing on ALS.

I’m trying to raise awareness of these tremendous needs we are fulfilling. I want to build great relationships in the Worcester community and the business community. Not having those connections, it is hard to do this from the ground up.

Are you employed by the foundation?

I’m a stay-at-home mom now, and I do the foundation work on a volunteer basis.

Down the road, I want to be an organization bringing in $500,000 per year, sending out half in grants and then having the assets to sustain the foundation.

I feel like I am in the transition from a startup to an enduring foundation. Ultimately, I would love to provide people with larger grants, more than $1,000.

This interview was conducted and edited for length and clarity by WBJ Editor Brad Kane.