Taylor's Tale is a public charity dedicated to the fight against CLN1 disease and other rare diseases. Learn more at https://xitter.cf/t.co/DI40Z2FQqk.
Charlotte, NC, USA
Joined December 2009
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Taylor's Tale retweeted
Doing my best to keep my late sister’s joyful spirit alive this #holidayseason. Here’s how: bit.ly/3yO9AMq #amwriting
This #GeneTherapy clinical trial is not accepting patients yet, but it’s a huge step forward! We’re proud to have supported this work from Day One. bit.ly/3q4VS3Y #raredisease
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It’s #battenday2021. Join us in honoring and remembering people like Taylor by completing a virtual 5K. #4taylor
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The Wells Fargo lights on #Charlotte’s Duke Energy Center are also blue, green, purple and pink to recognize #RareDiseaseDay2021 and honor Taylor’s memory tonight.
We’re shining a light on @rarediseaseday with @RocketPharma by glowing in green, pink & purple this evening. #RareDiseaseDay #ESBright
Taylor's Tale retweeted
Big thanks to @rickilewis for the shoutout in her #RareDiseaseDay post this week. Grab the #book for an inspiring read: amzn.to/2Ms9jej
Tonight, look to the #Charlotte skyline, where the Wells Fargo lights on the Duke Energy Center will glow for #RareDiseaseDay in Taylor’s memory.
The experts @ASGCTherapy have put together a fantastic resource for patients interested in driving #research. We're proud to see our own story included. Learn more: bit.ly/3bJu7pL #GeneTherapy #RareDiseases
When is it OK to quit fighting #RareDisease? That's the subject of our own @lkedwards11's latest column: bit.ly/319BkvF
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For seven years, we've worked hard to bring #GeneTherapy to children with CLN1 disease. We have a new partner in our push for the summit: bit.ly/2YjvpCG
We're thrilled that this #GeneTherapy program is back where it belongs - with Steven Gray. #RareDisease @UTSWNews
$ABEO and Taysha Gene Therapies Enter into Licensing and Inventory Purchase Agreements for ABO-202 for CLN1 Disease.
Taysha will make initial cash payments of $7M comprised of a $3M upfront license fee and $4M inventory purchase
Taylor's Tale retweeted
My latest column for @bionewsservices tackles #RareDisease drug development. Many thanks to @REGENXBIO's Vivian Fernandez for her time, knowledge and passion. Read it: bit.ly/3eHyLG3 #amwriting
Taylor's Tale retweeted
For many #RareDisease families, #SelfIsolation is nothing new. Get my take on #COVID2019 in my new column: bit.ly/3alnEzQ @bionewsservices
The #Charlotte skyline will glow for Taylor and 400 million #RareDisease patients tonight. Share your pictures with us! #RareDiseaseDay
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Taylor's Tale retweeted
I take any opportunity to connect with members of other state #RareDisease Advisory Councils. We are learning from & supporting each other as we work to improve the lives of families impacted by rare disease, ensure access to needed services & encourage research. #RDDNIH 🦓 – at Bethesda, MD
“When you start a company to bring cutting-edge #RareDisease treatments to market, you know what you’re up against.” #RareDiseaseDay #GeneTherapy
#RareDiseaseDay is tomorrow. Today, I'm issuing a challenge to clinical-stage companies (and one in particular) to finish the race you signed up to run. Read it: bit.ly/3830RqI #GeneTherapy
@BDSRA
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Thanks to #translationalncl organizers for another great meeting! We’re proud to support it and excited about the great work happening in science. #RareDisease
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Taylor's Tale retweeted
My sister inspired @taylorstale to spearhead (and fund) the first management strategies for CLN1 disease. She didn't benefit, but others will: bit.ly/2NoJ7z2 #RareDisease @BDSRA