Gina - I Care about Rare!

Every. Day. Awesome. 4xDragon Mama. SMU 🏈fan for life. Jojo’s Batten HOPE advocate👓 Miracle finder. Rare disease fighter 🥊

[Gina - I Care about Rare! @BattenHope]

I just want to point out that our #cln7 natural history study is starting the month of #rarediseasedau2019 - how cool is that!!? #everydayawesome

[Gina - I Care about Rare! @BattenHope]

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…https://t.co/Wb56peChUo https://t.co/OuBAIiTkg7

[Gina - I Care about Rare! @BattenHope]

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 -… https://t.co/gw1pQlx8FR

[Gina - I Care about Rare! @BattenHope]

And if you’d like to subscribe now...https://t.co/CfCEWXlSZg

[Gina - I Care about Rare! @BattenHope]

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

[Gina - I Care about Rare! @BattenHope]

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

[Gina - I Care about Rare! @BattenHope]

@Rose_of_Sharon8 Legit!

[Gina - I Care about Rare! @BattenHope]

We launched our #raredisease #podcast on #rarediseaseday! Check out @therarevillqge on @Spotify
https://t.co/F7ftzwyVaN

[Gina - I Care about Rare! @BattenHope]

@ScottFordTVGuy Affirmative! I have seen the #miracles - legit!

[Gina - I Care about Rare! @BattenHope]

#grateful for the amazing teams of scientists and researchers @NIH - to resolve #raredisease and all diseases, these teams work so hard.
https://t.co/SOEC0Ht2KM

[Gina - I Care about Rare! @BattenHope]

@krispykreme - your leap day baby promo is adorbs! But - #feb292020 also happens to be #rarediseaseday2020! Let’s honor all the sweet rare babies that day too with some donut freebies! (My adorbs rare baby included!) #battenhope #rarevillage

[BioBuzz @BioBuzzNetworks]

"There are 7,000 or 8,000 #rarediseases out there so there is an ocean of possible diagnosis." - @BattenHope https://t.co/FEeXGbjxd1

[BioBuzz @BioBuzzNetworks]

Why the @BattenHope Foundation is Funding #GeneTherapy Clinical Trials for Children with #RareDiseases https://t.co/rd9fjgrfnF

[Gina - I Care about Rare! @BattenHope]

@ScottFordTVGuy Today I saw a miracle happen - the kind that’s statistically pretty much impossible. So mostly my favorite kind. I ❤️ that you can share your journey and hope you know that everyday strangers are inspired by something beautiful in you - sending you some great healing vibes today.

[Gina - I Care about Rare! @BattenHope]

This family is an inspiration to ours. If you take a moment, they will inspire yours too. #RareDiseaseDay #battendisease #everydayawesome

[Jen VanHoutan @FarnieVanHoutan]

Beauty From Muck: The Rise of Rare Disease Advocacy - a reminder to find the beauty in each day. https://t.co/s2BUE2Z0yU

[Gina - I Care about Rare! @BattenHope]

#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

[Gina - I Care about Rare! @BattenHope]

@Nicole_Paulk Perhaps the universe is rewarding you with a well deserved a new wardrobe and fresh travel supplies? Ugggggh!

[Gina - I Care about Rare! @BattenHope]

#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!

[Gina - I Care about Rare! @BattenHope]

@andreawenzel I don’t know you but this is one lucky baby to have such an awesome mama. You’ve got this.

[Gina - I Care about Rare! @BattenHope]

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

[Gina - I Care about Rare! @BattenHope]

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

[Gina - I Care about Rare! @BattenHope]

#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

[NCATS @ncats_nih_gov]

Day 2 of The Workshop on Expanding AAV Manufacturing Capacity for RD Gene Therapies is happening now. Tune into the Videocast is now: https://t.co/yaE5TYcq5f #NCATSGeneTherapy

[Gina - I Care about Rare! @BattenHope]

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