Firefly Fund

A nonprofit that provides crucial support for research and education necessary to accelerate cures for rare genetic diseases that affect children.

[Firefly Fund @Firefly_Fund]

Firefly Fund is grateful for our generous #RareDiseaseDay sponsors 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 @Firefly_Fund]

Exciting development rare disease treatment: Healx developed an AI platform to repurpose drugs for rare diseases. The company which is among the first generation of companies built on an AI drug discovery engine. #RareDiseases #DrugDiscovery #AI
https://t.co/osNIIeSqFI

[Firefly Fund @Firefly_Fund]

Giving Tuesday is the perfect time to step forward to be part of the Firefly Fund mission. Together, we can make a real difference in the lives of rare disease patients and families. Simply visit our website and click on the DONATE button in the top right corner.

[Zevra Therapeutics @zevratx]

Zevra appreciates the work of #NiemannPick advocacy groups such as the @Firefly_Fund for their dedication to improving the lives of those affected by Niemann Pick disease type C. Thank you for your unwavering support of the #NPC community.

#NiemannPickAwareness

[Firefly Fund @Firefly_Fund]

Watch our new video - inspired by rare disease parents racing to find medicine to save their children - who, in the process, were embraced by a broader network of #RareDisease patient advocates with shared goals and dreams.

https://t.co/eR5MfRDiLK

[FOX 7 Austin @fox7austin]

Two Austin sisters are hopeful after the FDA recently approved two new treatments for their rare genetic disorder, Niemann-Pick disease, type C (NPC). https://t.co/CDqbp2EDMT

[Nicole Villalpando @nicvillalpando]

Austin-based @IntraBio gets an FDA approval. Here's how it could help a local family @Firefly_Fund @statesman https://t.co/Mnt76p67Cx

[Jason Scharf @Jason_A_Scharf]

Spotify: https://t.co/yb3quBsAOU

Apple: https://t.co/2mmMtiR9sA

Austin Next Website: https://t.co/LIK5WpGeet

[Jason Scharf @Jason_A_Scharf]

What does the future of medicine look like when every disease is thought of as rare?

How does that change our scientific approach? What about our business models?

[Jason Scharf @Jason_A_Scharf]

Can Austin Lead the Race to Solving Rare Diseases? In a word, Yes! It just takes people who won't take No for an answer.

🧬@Firefly_Fund's Origin
🤘 @UTAustin @DellMedSchool Rare Disease Cent
💡Tech & Health & Business Models
❤️‍🩹ATX's Future in Saving Lives

Links⬇️

[Firefly Fund @Firefly_Fund]

Today is the last day of Newborn Screening Awareness Month! @Firefly_Fund advances efforts to add rare diseases to newborn screening lists at state and federal levels. With your help, we can make a difference!

#newbornscreening
#pregnancy
#NewbornScreeningAwarenessMonth

[Firefly Fund @Firefly_Fund]

Last night was a terrific success! We thank our supporters for making our Firefly Dreams benefit a reality.

[Firefly Fund @Firefly_Fund]

Next week (9/26) we host Firefly Dreams – a benefit in support of rare disease research and education.

RSVP to join the guest list
https://t.co/AtTjrgipK5

Enjoy food, drinks, and live music performances by Monte Warden and Eddie Ray Band!

@montewarden
@eddie_ray_band

[Firefly Fund @Firefly_Fund]

Join us next Thursday 9/26 at The Headliners Club for Firefly Dreams ✨ featuring exceptional music performances by Monte Warden @MonteWarden1 and Eddie Ray Band!

RSVP only https://t.co/AtTjrgipK5

[Firefly Fund @Firefly_Fund]

Join us 9/26 for Firefly Dreams: A Benefit to Support Rare Disease Research & Education and hear the joyful sounds of Monte Warden, two-time member of The Texas Music Hall of Fame! The artist will perform and hold a meet & greet.

RSVP https://t.co/AtTjrgipK5

[Firefly Fund @Firefly_Fund]

Firefly Dreams: A Benefit to Support Rare Disease Research & Education

RSVP required
https://t.co/d9psz0kDat

September 26, 2024 5 - 7pm

The Headliner’s Club
221 West 6th Street Austin, TX

Special Guests
Monte Warden
Eddie Ray Band

Hors d'oeuvres, Refreshments & Cocktails

[Firefly Fund @Firefly_Fund]

WE DID IT! THANK YOU!

The Firefly Fund July Match Campaign was a big success! Thanks for joining the flight!

#fireflyfund
#jointheflight

We accept donations year-round! https://t.co/kXkyba0q4l

[Firefly Fund @Firefly_Fund]

Together, we can help children with #RareGeneticDiseases

Today is your FINAL DAY to donate and DOUBLE YOUR IMPACT – All donation's matched in July!

Every dollar raised goes to education and research for young rare disease patients.

Donate https://t.co/94cvB34f56

[Firefly Fund @Firefly_Fund]

Only 2 DAYS LEFT TO DONATE and help make a life-altering difference in the lives of children with #RareGeneticDiseases. Every donated dollar will be matched this month, DOUBLE YOUR IMPACT before July 31st.

Click to donate: https://t.co/94cvB33Hfy

#fireflyfund
#jointheflight

[Firefly Fund @Firefly_Fund]

Just A FEW DAYS left to DOUBLE YOUR IMPACT and donate during our July Match Campaign. Every dollar counts, providing hope for families affected by a life-altering diagnosis.

Click to donate: https://t.co/94cvB34f56

#fireflyfund
#jointheflight
#RareGeneticDiseases