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
慈善筹款服务
Austin，Texas 165 位关注者
Firefly Fund provides crucial support necessary to accelerate cures for rare genetic diseases that affect children.
关于我们
Firefly Fund provides crucial support for research and education necessary to accelerate cures for rare genetic diseases that affect children and currently have no cure. The inspiration behind the Firefly Fund came after parents Pam and Chris Andrews discovered that both of their daughters, Belle age 6 and Abby age 2, had Niemann-Pick Type C1 (NPC1) in early 2016. NPC1 is a progressive neurodegenerative disease that attacks every cell of the human body and has a lifespan of 12-20 years.
- 网站
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https://fireflyfund.org/
Firefly Fund的外部链接
- 所属行业
- 慈善筹款服务
- 规模
- 2-10 人
- 总部
- Austin，Texas
- 类型
- 非营利机构
- 创立
- 2017
- 领域
- Newborn Screening、Awareness、Coalitions、NPC和Rare Diseases
地点
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主要
获取路线
P.O. Box 92616
US，Texas，Austin，78709
Firefly Fund员工
动态
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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
We are proud to sponsor Firefly Fund and support their vital work in the early detection of newborn health issues. Learn more about their important efforts here: https://bit.ly/40sLFjM #CYTH #FireflyFund
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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.
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?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
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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
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Firefly Fund转发了
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
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Firefly Fund转发了
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
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Firefly Fund转发了
"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
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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
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Pam and Chris Andrews joined Jason Scharf's podcast, Austin Next, to chat about Firefly Fund, our hopes for the #CenterforRareDisease at the Dell Medical School at the University of Texas at Austin and how #Austin is at the forefront of the intersection of #tech and #healthcare. Grab a cup of coffee and have a listen. Thank you, Jason, for believing in our mission and helping us #ShineALight on how the rare disease community can help light the way for the future of precision medicine in Austin, in #Texas, and in the world. #fireflyfund #ShiningALightOnRareDisease #JoinTheFight #NewbornSreeningSavesLives
Early Stage Bio & Health Investor | Ecosystem MetaCognition Substack | Host of the Austin Next Podcast
Nothing motivates a parent to action like a sick child. Words like "no" & "impossible" are merely roadblocks & on today's Austin Next we learn what that means for Austin & the world. I'm joined by Pam Andrews & Chris Andrews, founders of the Firefly Fund, who turned their battle with their daughters' rare genetic disorder into a mission to revolutionize rare disease research & treatment. We discuss: -Firefly Fund's Origin -Establishing a Rare Disease Center at UT Dell Medical School? -Navigating the Diagnostic Odyssey -Interplay of Tech Innovation and New Business Models in Healthcare -Downstream Effects of Rare Disease Advancement The Andrews' vision? Austin at the forefront of tech & healthcare innovation. Soon, people will think of Austin for UT, BBQ, & saving lives! ?? Catch the full episode on all podcast platforms. Links in comments below!? What's Next?
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