Firefly Fund
A nonprofit that provides crucial support for research and education necessary to accelerate cures for rare genetic diseases that affect children. We fund research and education to accelerate cures for rare genetic diseases that affect children.
ICO
263253844
1900
X (Twitter)
242
Address
Philadelphia
Shining a Light on Rare Disease - Firefly Fund Shining a Light on Rare Disease Our mission is to fund and support research and education necessary to accelerate cures for rare neurodegenerative genetic diseases that affect children and currently have no cure. Firefly Fund UT Dell Medical School Over 30 million Americans are estimated to be living with a rare disease There are over 7000 known rare diseases Receiving a rare disease diagnosis can be a multiyear medical odyssey Watch our new video capturing the spirit of our mission inspired by rare disease parents racing to find medicine to save their children who in the process wereRead More Your donations fund crucial support for research and education necessary to accelerate cures for rare genetic diseases that affect children and currently have no cure. Matthew McConaughey shares a note on the Firefly Fund a nonprofit organization based in Austin TX. Our mission is to fund and support the research and education necessary to accelerateRead More Our Lived Experience Parents Pam and Chris Andrews noticed their eldest daughter Belle was showing developmental delays in gross and fine motor skills and coupled with other concerns they had such as a swollen spleen and low platelets the parents and their young daughter began a multiyear diagnostic odyssey that spanned over a dozen therapists and medical specialists.
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Firefly Fund
✨September is Newborn Screening Awareness Month, a month recognizing the vital significance of newborn screening. Through newborn screening, clinicians can identify conditions that can affect a child's long-term health or survival. These screenings help detect rare diseases before symptoms appear, giving families access to care and treatments, sooner.
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Remedial Reading, Reading Encouragement Category
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Good News
Sára
2025-10-28
our family. Excited to see them embrace new friendships and grow in their faith! Education is a journey, and I'm grateful for the support we found along the way. Let's inspire our kids to lead with love and compassion! ❤️📚 #PositiveChange #CommunitySupport
Training Kids in Jesus' Ways -- Not Neutrality or Nationalism
Patheos - Seek. Understand.
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Martha
2025-10-28
🚑✨ Great news from Wake County EMS! They're changing how they respond to 911 calls by reducing sirens and lights for most emergencies. This thoughtful approach prioritizes safety, minimizes road confusion, and aims to create a safer environment for everyone. Change is possible! #GoodNews #CommunitySafety
Change coming to Wake County EMS: Ambulances to silence sirens, turn off lights for most 911 calls
WRAL
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