Confessions of a Rare Disease Mama
Creative Fundraising in the Rare Disease Community – Global Genes Panel Recording
In this special episode of Confessions of a Rare Disease Mama, I'm sharing the live audio from a panel I had the honor of moderating at the Global Genes Rare Advocacy Exchange. This conversation dives into the power of creative fundraising—something so many of us in the rare disease community are tasked with, whether we feel ready or not.
You'll hear from three incredible rare parents who are using their voices, talents, and grit to fund life-changing research and support. We talk strategy, heart, and the very real emotional toll (and triumph) that comes with fundraising for our children.
🎤 Featured Panelists:
- Brittany Markham – Rare Mama to Damian, who has raised over $1 million toward ASMD research through innovative, and extra creative efforts. Check out her past episode here:
- Kasey Woleben – Rare Mama & Co-founder of the Rare Village Foundation. A powerful advocate for families navigating rare diagnoses.
*You'll also hear briefly from Daniel DeFabio, Director of Community Engagement at Global Genes and rare dad to Lucas. Daniel has joined me on the podcast before! You can check out his past episodes here:
🔗 Resources Mentioned:
- Global Genes Rare Advocacy Exchange: globalgenes.org
- Rare Village Foundation: rarevillagefoundation.org
- Please Save Damian (Markham family fundraiser site): savedamian.com
Resources & Links for this episode:
- Buy Soaring Together: Amazon, Barnes & Noble, or locally at Bike Trail Books in Loveland and the Cincinnati Zoo Gift Shop
- Learn more about our brave warriors: saveromanandstella.com
- Support our family: GoFundMe
- Follow us!
- Instagram: @confessionsofararediseasemama
- TikTok: @rare_mama
- Facebook: Jillian Arnold & Confessions of a Rare Disease Mama
- Get your FREE Positive Affirmations for the Medical Parent PDF here!
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