Firefly Fund

Will you be in Austin during the month of March? You can show your support by choosing The Firefly Fund and choosing to “round-up” to the nearest dollar amount when you checkout at any The Soup Peddler Real Food & Juice Bar store or online today through March 31. Your donations help us advance our mission of accelerating access to life-saving and life-changing therapies for #RareDisease patients. Thank you to our generous sponsor, The Soup Peddler!?

Firefly Fund is grateful to our generous #RareDiseaseDay sponsors, RIDE Indoor Cycling and 5 Circle Skin Care and their recognition of the strength, resilience, and hope of rare disease patients, families, researchers, scientists, and clinicians. Your support is the spark that fuels our work ?? #ShiningALight

Firefly Fund is proud to partner with companies like Cyclo Therapeutics, Inc., developing therapies for #childhoodalzheimers, aka Niemann Pick Type C. Together we are moving the ball down the field on newborn screening for #NPC. #firelyfund

Join us in recognizing the rare disease community, especially during February, #RareDiseaseAwareness Month. The global effort raises awareness and generates change? for the 300 million people worldwide living with a rare disease, their families and caregivers.

?Check out an exciting development rare disease treatment: Healx developed an AI platform to repurpose drugs for rare diseases. Learn more in this conversation with the founder about the company which is among the first generation of companies built on an AI drug discovery engine. #RareDiseases #drugdiscovery #AI https://lnkd.in/dvfeEuZq

Giving Tuesday is the perfect time to step forward to be part of the Firefly Fund mission. Your support is the driving force behind our success, and we are deeply grateful for it. Together, we can make a real and lasting difference in the lives of rare disease patients and families. To donate simply visit our website fireflyfund.org and click on the DONATE button in the top right corner. #givingtuesday #fireflyfund #nonprofit #donate #supportlocal

Zevra Therapeutics would like to extend a special thanks to the Burgos and Andrews families who shared their #NPC journeys and the important work of the Firefly Fund at our annual Zevra Zeal town hall meeting last month. We appreciate your continued support of our mission of developing treatments for #RareDiseases. #NiemannPick

Zevra Therapeutics deeply appreciates the work of #NiemannPick advocacy groups such as the Firefly Fund for their dedication to improving the lives of those affected by #NPC. Thank you for your unwavering support of the NPC community. #NiemannPickAwareness

"The FDA has to listen to the advocacy groups...because frankly, the advocacy groups have more experience than the FDA in the drug and in the disease." -Chris Andrews, founder of Firefly Fund, on this week's podcast

Thank you Jenna King and Fox 7 Austin for shining a light on NPC, the new FDA approved drugs, and on the Andrews family journey. #shiningalightonraredisease #fireflyfund #niemannpick