Firefly Fund

@Firefly_Fund

Funding and supporting the research and education necessary to accelerate a cure for rare and fatal neurodegenerative genetic diseases affecting children.

Austin, TX
Vrijeme pridruživanja: siječanj 2017.

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  1. 31. sij

    "Alexander's Film" premiered at the recent Annual Family Conference. The piece feat. Alexander Key and his parents who discuss their lives before & after Alex was diagnosed with NPC.

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  2. 29. sij

    We're 1 month away from our 3rd annual event! Join us for happy hour from 5-8 pm 2/28 at Antonelli's Cheese House in ATX, as we recognize World Rare Disease Day & celebrate the accomplishments & members of 's village.

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  3. 21. sij

    About 50 percent of Niemann-Pick Disease Type (NPC) cases affect children before age 10. But some NPC patients, like Dee Reynolds of Northern Virginia, are not diagnosed until age 60.

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  4. 16. sij

    FDA Drug Approvals Report for 2019 Highlights New Treatments for Rare Diseases via

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  5. 5. pro 2019.

    Thanks to everyone who followed, liked & shared our social media posts last month to spread awareness of & our mission to find a cure for rare childhood neurodegenerative diseases like !

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  6. 3. pro 2019.

    This , give a little of your time or support to make a lot of difference for NPC patients and their families:

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  7. 2. pro 2019.

    We envision a world where every parent whose child is born with a like NPC will know the diagnosis at birth through newborn screening & obtain early access to treatment. Help make that a reality for 100s of NPC families this : .

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  8. 24. stu 2019.

    Ohio 2 year old battling rare Niemann-Pick-Disease dubbed childhood Alzheimer's: #shiningalightonNPC1#jointheflight

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  9. 23. stu 2019.

    “I know first hand the lengths parents will go to help their children — especially when they're sick. Pam & Chris, I support your valiant efforts to create the ." - Actor, producer & professor

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  10. 22. stu 2019.

    Girl, four, with 'childhood Alzheimer's' defies her death sentence to start pre-school and ballet classes after taking a trial drug:

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  11. proslijedio/la je Tweet

    As a young toddler, Jeg was diagnosed with Crohn’s disease and Niemann-Pick disease type C. Now, he’s living life to the fullest, riding his dirt bike and pumping up the crowd as this Saturday! Meet Jeg Weets (6) from Morrison, IL. .

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  12. 18. stu 2019.

    "Through Pam & Chris' efforts & the village they've created with , , & , they will work together to treat & seek a cure for neurodegenerative diseases in children." -

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  13. 11. stu 2019.

    Rare disease council hopes to ensure families are not an ‘afterthought’

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  14. proslijedio/la je Tweet
    4. ruj 2019.

    Thank you — the founding sponsor for 's national newborn screening initiative for NPC.

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  15. proslijedio/la je Tweet
    14. lis 2019.

    Early diagnosis of is key to ensuring that families have timely access to the right management options. We support the 's advocacy for adding this severe condition to standard newborn screening panels.

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  16. 7. stu 2019.

    Technology Reshaping the Rare Disease Landscape, but Non-Scientific Challenges Threaten to Impede Progress

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  17. proslijedio/la je Tweet
    23. lis 2019.

    This Company Just Provided a Grant for a Niemann-Pick Disease Type C Screening Program

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  18. 5. stu 2019.

    Board Spotlight: MariBen Ramsey has served on 25+ nonprofit boards. She advises nonprofits in governance, board development, fund development, legal issues & planning. Learn how she's :

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  19. 2. stu 2019.

    We’ve joined w/ on a Nov. challenge encouraging our supporters to reach 10K shares to raise $10K benefiting initiatives like NBS for NPC. 1 share = $1. Let's get sharing & don’t forget to encourage your friends & family to !

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  20. 31. lis 2019.

    Happy Halloween from the Firefly Fund! 🎃

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