Gina - I Care about Rare!
@BattenHope
Every. Day. Awesome. 4xDragon Mama. SMU 🏈fan for life. Jojo’s Batten HOPE advocate👓 Miracle finder. Rare disease fighter 🥊
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I just want to point out that our #cln7 natural history study is starting the month of #rarediseasedau2019 - how cool is that!!? #everydayawesome
A major milestone in the journey to #battencln7 clinical trial that #battenhope has been working for almost 2 years to fund! The natural history study starts this month for #battendisease types #cln7 and #cln5. What’s a natural his…lnkd.in/eSrS3Rx lnkd.in/ewmgKSU
If you ever want to know how to treat a rare child, ask his sibling. Jojo brought Will into our lives through our work with therarevillage and he and Matt have become fast friends. Of course, boys will be boys -… instagram.com/p/B9iEno8Hmk8/…
And if you’d like to subscribe now...podcasts.apple.com/us/podcast/the…
Our new #raredisease #podcast is up on @ApplePodcasts - not excited at all....kidding. Kind of excited! We are building a big little village for rare disease #families #everydayawesome
Our new #raredisease #podcast is up on @ApplePodcasts - not excited at all....kidding. Kind of excited! We are building a big little village for rare disease #families #everydayawesome
We launched our #raredisease #podcast on #rarediseaseday! Check out @therarevillqge on @Spotify open.spotify.com/show/56pbraA58…
#grateful for the amazing teams of scientists and researchers @NIH - to resolve #raredisease and all diseases, these teams work so hard. nih.gov/news-events/ne…
"There are 7,000 or 8,000 #rarediseases out there so there is an ocean of possible diagnosis." - @BattenHope ow.ly/zmsI30qj5dq
Why the @BattenHope Foundation is Funding #GeneTherapy Clinical Trials for Children with #RareDiseases ow.ly/O0Oo30qj5dk
This family is an inspiration to ours. If you take a moment, they will inspire yours too. #RareDiseaseDay #battendisease #everydayawesome
Beauty From Muck: The Rise of Rare Disease Advocacy - a reminder to find the beauty in each day. smithsolve.com/insights/beaut…
#ThursdayThoughts from #ncatsgenetherapy workshop: “#personalizedmedicine is treating patients with the right #drug off the shelf...#individualizedmedicine is #creating the right drug.” #250 new #rarediseases discovered each year means both are critical. #rareparentsmatter
#ThursdayThoughts from the #ncatsgenetherapy workshop: there are 6500 known molecular diseases and only 500 with #fda approved therapies. #patient advocates drive the outcome - let’s do this mamas and papas!
You know what’s awesome? When you’re interviewed by the Maryland Public News station and you look like maaaaaybe you’re going to answer that question after you belch reaaally loud. #lemmetellya #rarehumor
The world of #raredisease just got a newly opened #GMP facility @VigeneBio and the #hope that comes with it is nothing short of beautiful. Congrats Vigene - you are going to change the world for so many families. #battenhope #raredallas #oneshottolive #WednesdayMotivation
#raredisease families we matter more than you know here - take the time now or later and learn about what’s happening now in manufacturing for #genetherapy #ncatsgenetherapy #nih
Day 2 of The Workshop on Expanding AAV Manufacturing Capacity for RD Gene Therapies is happening now. Tune into the Videocast is now: videocast.nih.gov/live.asp?live=… #NCATSGeneTherapy
PSA: if you are a #raredisease parent looking to understand #AAV9 manufacturing check out the #NCATSGeneTherqpy workshop online - incredible explanations from leading scientists. And it’s #FREE
Manufacturing obstacles for gene therapy follow up - we know there are other industries with cGMP processes. What could we learn from them to serve our rare community faster?
When you walk into the meeting room @NIH for the #aav9 manufacturing workshop and you documentary is on the screen. #everydayawesome #oneshottolive
Well that’s cool. Check out ti.com and see our story on the homepage! Tomorrow is #givingtuesday2019 - we would love your help to reach our goal to complete funding for gene therapy for CLN7! Let’s #triumph in… instagram.com/p/B5kwwkcnXPJ/…
Thank you to our colleagues and leadership at Texas Instruments for the recognition of our work and the Foundation for Batten Hope, with the TI Founders Community Impact Award. We are so grateful to be a part of this incredible company and for the opportu…lnkd.in/eJytUze
Today is the #everydayawesome you are waiting for. Live it with full #gratitude
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