RARE Advocacy Exchange 2025 Session 3 Innovative Fundraising

Whether advocating for themselves or a loved one, navigating healthcare, or creating change within their community, leadership becomes essential for those of us dealing with rare diseases in our lives. Global Genes’ RARE Advocacy Exchange is a series of virtual events designed to empower, equip, and elevate individuals with the leadership skills to help make a change.

Thinking Outside of Your Inbox: Innovative Fundraising Opportunities
Thursday, April 10

Moderator:
Jillian Arnold, Rare Disease Mom & Advocate, Podcast Host, and Author

Brittany Markham, Rare mom, ASMD, “Please Save Damian” Campaign

Kasey Woleben, Rare Village, Cure Mito Foundation

Leadership in rare disease advocacy requires creativity and resourcefulness. This Rare Advocacy Exchange session spotlighted creative and community-driven fundraising strategies that go far beyond traditional email appeals. Featuring panelists Brittany Markham, Kasey Woleben, and Jillian Arnold—each with personal connections to rare disease—the conversation showcased innovative, heartfelt, and practical approaches to fundraising. Through storytelling, social media, grassroots engagement, and unexpected partnerships, these advocates are mobilizing communities and raising meaningful funds for life-changing research.

Key Takeaways

1. Storytelling Drives Connection and Donations

• Fundraising success starts with vulnerability and authenticity. Sharing your “why”—especially through social media—builds trust and emotional investment.
• People donate to people, not just causes. Make the story personal and relatable.

2. Innovation Comes From Your Strengths

• Play to your passions. Brittany turned her background in theme park design into immersive garage-based fundraisers. Others leaned into bake sales, merchandise, gaming tournaments, and Guinness record attempts.
• There’s no single right way—success looks different for everyone.

3. Community Is Your Superpower

• Involving supporters as collaborators—donating supplies, crafting bracelets, or hosting satellite events—builds momentum and shared ownership.
• Online communities become real-world allies when you let them in.

4. Small Donations Add Up

• “Power of small asks” campaigns ($5 for a 5th birthday, $29 for copper on the periodic table, etc.) lower the barrier to entry and often lead to larger gifts.
• Use symbolism and specificity to make small asks feel meaningful.

5. Not Every Fundraiser Will Succeed—and That’s OK

• Fundraising is a learning process. Analyze effort vs. return to refine future events.
• Even “flops” often lead to valuable exposure, relationships, or media opportunities.

6. Leverage Low-Lift Tools and Partnerships

• Use Amazon Wish Lists, QR codes, car magnets, and services like Spread Good Shop to extend reach without overwhelming effort.
• Fiscal sponsors like Rare Village can help early advocates fundraise without their own nonprofit status.

7. Collaboration Multiplies Impact

• Whether teaming up with others in your disease space or involving your local community, co-creating amplifies visibility and reach.
• Collective campaigns (like lemonade stands or hot cocoa days) can build culture and community while raising funds.

Action Items & Next Steps

For Individual Advocates:

• Pick one social media platform to begin telling your story.
• Create a simple fundraiser around a birthday, holiday, or awareness day with a small suggested donation amount.
• Design a car magnet, shirt, or yard sign with a QR code linked to your fundraising page.
• Draft an Amazon Wish List for upcoming events and share it with your network.

For Organizations and Coalitions:

• Explore fiscal sponsorship options like Rare Village to support emerging advocates without 501(c)(3) status.
• Launch a coordinated “same-day” grassroots campaign (e.g. national lemonade stand day, garage sales, cocoa stands).
• Consider low-effort merch fundraisers through platforms that handle logistics.

For Everyone:

• Reassess past fundraisers: What worked? What was most effort vs. return? Use this to refine your approach.
• Brainstorm your unique skillset or interests and how those could be turned into a creative campaign.
• Stay connected with this network—share wins, ask for help, and look for collaboration opportunities.

Related Resources:

• Funding Sources You May Not Have Heard Of – Global Genes video
• Fundraising Ideas Anyone Can Try – Global Genes video
• Fundraising Do’s And Don’ts –  Global Genes video
• RareVillage.org
• Navigating Resources & Grants – Confessions of a Rare Disease Mama Podcast
• How to Fundraise Like a Boss – Confessions of a Rare Disease Mama Podcast