#004: Penelope Frew from Mito Foundation on the importance of funding the "glue"

Supporting people living with rare diseases isn’t just about funding research. I sat down with Penelope Frew, Development Manager at MITO Foundation — Australia’s peak body dedicated to mitochondrial disease (mito) research, support, and advocacy.In our conversation, what kept surfacing was how much of this work goes unseen — the parts families rely on most, and the parts that are often hardest to fund: support, access, coordination, and time.We discuss:🟢 the reality that treatments can be global, but access is local — and what that means for Australians with mito 🟢 the challenge of translating complex science into strict word limits and 20-second reels 🟢 the hardest dollar being unrestricted funding — and the hard work of earning a funder’s trust 🟢 how admin burden hits small teams harder, and why “good reporting” needs to be relevant, not rigid 🟢 the tension in being community-led without trying to do everything (and the organisational discipline to pull back) 🟢 “funding the glue” — connecting community, clinicians, researchers, and funders 🟢 where generative AI is already saving time, and why human judgment has to stay centralSponsored byGrantDrafter — draft your next grant in 5 minutes or less.