Episode 200

Fundraising Strategies for Patient Advocacy Organizations Raising Money for Rare Disease Research with Lindsay Stevens

Sep 28, 2023

31:56

Genetics & Genomics Clinical Trials & Research Rare Disease

Episode Description

ONCE UPON A GENE - EPISODE 200

Fundraising Strategies for Patient Advocacy Organizations Raising Money for Rare Disease Research with Lindsay Stevens

Lindsay Stevens is a CTNNB1 mom and a skilled fundraiser who has harnessed her passion and expertise to rally support for CTNNB1 research initiatives. She joins me for a discussion about the art of fundraising and how the smallest efforts can spark profound change.

EPISODE HIGHLIGHTS

Can you share about yourself and your family?

I'm a mom of three children, two typical children and my youngest who was diagnosed with CTNNB1 at about two and a half years old. In my work life, I work for a nonprofit and I'm well-versed in all things fundraising.

Why is fundraising crucial for advancing medical research and why is it important for families to get involved?

It's up to us as parents to make a grassroots movement and if we're going to approach researchers to find treatments for our kids, they need the financial support to do that.

What can parents do to contribute to fundraising goals and maximize contributions?

Think about what your skills are and how you can contribute and make a change— writing letters to people you know, advocating, coordinating fundraising events, or something else. Parents need to think about who they know in their personal network where fundraising can come from. If someone is making a gift, it's possible that the company they work for will match the gift. Grandparents want to help and if they're at the age that they need to take disbursements from their IRA's, they can gift it to a nonprofit and avoid tax penalties. Parents can write a letter outlining fundraising goals and make an appeal to people they are sending holiday cards to. Communicate within your network at different milestones throughout the year like at the end of the school year or when the school year resumes, provide updates about your child and ask for a contribution. If someone makes a gift, take the time to write a hand-written thank you note, because acknowledging a gift is just as important as asking for one.

LINKS & RESOURCES MENTIONED

Dante Labs

https://us.dantelabs.com/

Email Lindsay

lindsayannstevens@gmail.com

CTNNB1 Connect and Cure Podcast

https://www.curectnnb1.org/podcast/

TUNE INTO THE ONCE UPON A GENE PODCAST

Spotify

https://open.spotify.com/show/5Htr9lt5vXGG3ac6enxLQ7

Apple Podcasts

https://podcasts.apple.com/us/podcast/once-upon-a-gene/id1485249347