A Q&A with PRISMS Community Fundraisers
By: Jackie Fallenstein – PRISMS Board Member-at-Large
One of the ways PRISMS members and friends support our mission is by holding fundraisers in their local communities. In 2022, these fundraisers raised over $60,000 for PRISMS programs! Fundraisers can take many formats and may be inspired by the organizer’s interests or connections. PRISMS is always willing to help support these community fundraising efforts.
Three of PRISMS’ 2022 community fundraisers, Sylvia Farber, Jason Michaud, and Jean Marie Bishop shared information and thoughts about their respective events:
Q: What is the name of your fundraiser, and how would you describe it?
SF: Pickleball for PRISMS is a fun, family-friendly event for every level of play. The event includes a tournament, free play on pickleball courts, bocce ball, and yard games. Dinner and drinks are also included.
JM: Saves for SMS is a hockey-themed fundraiser. Our sons Ryan and Nikolas combined their love of their sister Jillian (who has SMS) with their love of ice hockey. Nikolas is a hockey goalie, and the boys sought pledges for every save Nikolas made in February 2022. The boys created a video about their fundraiser and posted it on Facebook. With the help of media attention, they had over 200 donors!
JB: Nickels for Nico is a cornhole tournament that also includes a raffle and dinner (Nico is my fifteen-year-old son with SMS). Funds are raised through entry fees, donations, and a 50/50 raffle.
Q: Is this year the first time you held this fundraiser? If not, what year did you start it and have you repeated it annually?
SF: 2022 was our second year with the pickleball format. Previously we held a similar bowling event called Bowling for SMS, which we created around 2010.
JM: This was the first year the boys did this fundraiser. The hope is that it becomes a bi-annual event. We are hoping for a bigger and better Saves for SMS in 2024!
JB: We have held Nickels for Nico annually except for a year or two during COVID. 2022 was the 11th year we have held the fundraiser.
Q: What prompted you to start a fundraiser for PRISMS?
SF: Shortly after our daughter Austin’s diagnosis, we attended our first PRISMS conference. The education and support PRISMS provides is not available anywhere else. It took us 5 ½ years of searching for answers to finally get an SMS diagnosis. We wanted to support PRISMS so greater awareness can be generated, and other families can access the support and education PRISMS offers sooner!
JM: In the spring of 2019 the boys did a bake sale fundraiser for PRISMS. They decided they wanted to create another fundraiser to support PRISMS. As a family we brainstormed several ideas and Saves for SMS was the idea the boys decided on.
JB: I wanted to support more conferences! PRISMS has helped our family on our journey in multiple ways, and the most important to me are the conferences.
Q: Why did you pick this specific fundraiser?
SF: We wanted a family-friendly event that allowed for socializing.
JM: The idea came from watching the World’s Longest Hockey Game, a massive cancer fundraiser in our local community. Nikolas said we should do a “world’s longest game for PRISMS.” This was the beginning of the discussion to do a fundraiser for PRISMS using hockey as the vessel. A “world’s longest” game was not feasible, but the idea of Saves for SMS was born.
JB: A cornhole tournament is easy to organize. We rent a park, and it doesn’t require logistics like closing streets or hiring police. There’s a playground for families to use, too. The cornhole bracket is quite easy to create the day of the event. My siblings take care of the food and drink each year, which is a big help.
Q: Beyond fundraising, what else do you think was achieved with the event? Were there any unexpected outcomes or surprises?
SF: Awareness is also a great outcome! There are always new attendees at our fundraisers, so we get the opportunity to educate new people each year.
JM: The boys also wanted to raise awareness of SMS. After every game Ryan wrote an email to all donors. Each update contained a fact about SMS and something the boys loved about Jillian. The amount of feedback he received from his updates was heartwarming – people loved learning about SMS and Jillian. A big surprise from the event was that through the media attention the fundraiser garnered, we ended up learning there were four families in our community with children with SMS that we didn’t know beforehand!
JB: Celebrating Nico and his unique personality! Raising awareness. Reconnecting with other SMS families. I invite other SMS families to stay and enjoy a cookout and pool party the following day. It’s a great way to connect in a more low-key setting.
Q: What advice would you give another PRISMS member considering creating a fundraiser?
SF: Just do it! Come up with an idea where your friends are inviting their friends. It becomes way less overwhelming when you invite a few with the expectation that those few then invite a few more.
JM: Just go for it! We had a crazy idea with modest expectations and were overwhelmed with love and support from people all over the country. You will never know unless you try, and even the smallest fundraiser still has huge impact for PRISMS and our SMS families.
JB: Anything is better than nothing! The community loves our kids!!!
Q: Anything else you would like to share?
SF: I would be happy to share any materials and insights from our fundraising experience and walk alongside anyone who desires to fundraise for PRISMS.
PRISMS is deeply grateful for Sylvia, Jason, Jean, and their families, and every community member who organized or participated in a fundraiser. Your efforts support PRISMS and increase awareness of SMS. THANK YOU!
Are you planning or are you interested in running a fundraiser to support PRISMS and the SMS community? Email us at info@prisms.org or check out our Fundraising page to learn more. We’d love to help you host a successful event!