Taylor's Tale

Taylor's Tale is a public charity dedicated to the fight against CLN1 disease and other rare diseases. Learn more at

[Laura King Edwards @lkedwards11]

Doing my best to keep my late sister’s joyful spirit alive this #holidayseason. Here’s how: https://t.co/tI6L7NbOir #amwriting

[Taylor's Tale @taylorstale]

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. https://t.co/OHq6anHBYV #raredisease

[Taylor's Tale @taylorstale]

We have exciting news about a CLN1 disease #Clinicaltrial: https://t.co/OHq6anHBYV #RareDisease

[Taylor's Tale @taylorstale]

It’s #battenday2021. Join us in honoring and remembering people like Taylor by completing a virtual 5K. #4taylor

[Taylor's Tale @taylorstale]

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.

[Empire State Building Observation Deck @EmpireStateBldg]

We’re shining a light on @rarediseaseday with @RocketPharma by glowing in green, pink & purple this evening. #RareDiseaseDay #ESBright

[Laura King Edwards @lkedwards11]

Big thanks to @rickilewis for the shoutout in her #RareDiseaseDay post this week. Grab the #book for an inspiring read: https://t.co/ADEICWyVIJ

[Taylor's Tale @taylorstale]

Tonight, look to the #Charlotte skyline, where the Wells Fargo lights on the Duke Energy Center will glow for #RareDiseaseDay in Taylor’s memory.

[Taylor's Tale @taylorstale]

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: https://t.co/ZPmiaJvfJs #GeneTherapy #RareDiseases

[Taylor's Tale @taylorstale]

When is it OK to quit fighting #RareDisease? That's the subject of our own @lkedwards11's latest column: https://t.co/cCuSWhlE5r

[Taylor's Tale @taylorstale]

@sfcomms Thanks so much!

[Taylor's Tale @taylorstale]

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: https://t.co/sgYpa3Hmpm

[Taylor's Tale @taylorstale]

We're thrilled that this #GeneTherapy program is back where it belongs - with Steven Gray. #RareDisease @UTSWNews

[Bio Stocks™ @BioStocks]

$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 @taylorstale]

From near or far, you always had our back. RIP, Lance. #BattenDisease @BDSRA

[Taylor's Tale @taylorstale]

@Batten_PSDL @BDSRA So, so sorry to hear this. Lance was a good man and gave his life to the Batten community.

[Laura King Edwards @lkedwards11]

My latest column for @bionewsservices tackles #RareDisease drug development. Many thanks to @REGENXBIO's Vivian Fernandez for her time, knowledge and passion. Read it: https://t.co/fodJFh88wE #amwriting

[Laura King Edwards @lkedwards11]

For many #RareDisease families, #SelfIsolation is nothing new. Get my take on #COVID2019 in my new column: https://t.co/s94vSPooJr @bionewsservices

[Taylor's Tale @taylorstale]

The #Charlotte skyline will glow for Taylor and 400 million #RareDisease patients tonight. Share your pictures with us! #RareDiseaseDay

[Stephanie Fischer @RarePOV]

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 🦓

[Taylor's Tale @taylorstale]

“When you start a company to bring cutting-edge #RareDisease treatments to market, you know what you’re up against.” #RareDiseaseDay #GeneTherapy

[Laura King Edwards @lkedwards11]

#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: https://t.co/UglocZfPjR #GeneTherapy
@BDSRA

[Taylor's Tale @taylorstale]

Alone, we are rare. Together, we are STRONG. #RareDC2020 #RareDiseaseDay #RareDiseaseWeek