Corrin Jackson

#RareMom #fightingforCLN2 #parenting #battendisease #advocate #Batten #CLN2

[Corrin Jackson @AmbitioninLif]

@TayshaGTx please help #cln1 #batten #disease start their #genetherapy trials
#raredisease #rarediseaseawarenss

[Corrin Jackson @AmbitioninLif]

@Batten_PSDL @WUSTLPeds @SFGiants @Cardinals What kind of updates to Batten disease?

[Corrin Jackson @AmbitioninLif]

Please Support and join #BDSRA #battendisease virtual 5k https://t.co/cqBUfQw6OA #RareDisease #rareadvocacy
#patientadvocacy #fightingforcln2

[Corrin Jackson @CCJackson0814]

We the Rare Disease community need your help with contacting your Congress, with an easy click and submitting your information. We need this bill to become a law, so we can have faster access to therapy approvals, because we don't have time to spare.
https://t.co/9e6pBuMhFL

[Bedrock Health @BedrockHealth]

Check out our Rare Disease Day film on https://t.co/pjUUgkGrLN. It’s 4 minutes of a true story you won’t want to miss. #RDD2022 #battendisease #showyourcolours

[Corrin Jackson @AmbitioninLif]

Support the STAT Act https://t.co/Ptjfl2Cbyv

[JenellBStewart @JenellBStewart]

An important lesson I’ve learned in this life is that doing you, living your truth, carrying yourself with honesty and integrity, committing yourself to lifelong learning and improvement, and pouring your heart into your passions will always land you exactly where you need to b

[Corrin Jackson @AmbitioninLif]

#RareDiseaseDay #fightingforCLN2 #BDSRA #batten #CLN2 #rareadvocacy #rareawareness

[Corrin Jackson @AmbitioninLif]

Support the STAT Act https://t.co/Ptjfl2Cbyv

[Corrin Jackson @AmbitioninLif]

A good Batten Friend was just diagnosed with stage 2 metaplastic breast carcinoma.
I can’t image the fear they face, Batten disease already F* sucks without adding cancer on top of it. If you could please help #CANCER #cancerfighter
Molly Koslowski https://t.co/WI9gubKTGr

[Corrin Jackson @AmbitioninLif]

Just posted a photo https://t.co/OWj9jL1QUv

[JenellBStewart @JenellBStewart]

It’s the first Monday of 2022! Drop a ☕️ in the comments if you've had your first cup already. Are you ready to smash them 2022 goals?!

[Rare Disease UK @rarediseaseuk]

Want to star in a #RareDiseaseDay video to help highlight the diversity of the rare community? Especially looking to hear from young adults with a rare condition from minority ethnic communities/ the LGBTQI+ community. Email [email protected] by 12 Jan.

[BattenFighters4ever 💙 @battenfighters4]

World Braille Day is annually celebrated on January 4.
Today is the birthday of Braille inventor, Louis Braille. (1809-1852)
The day recognizes the contributions of Louis Braille in helping blind and visually impaired people to read and write.
#cln3 #Braille #BattenDisease

[BrainBridger News @BrainBridger]

Learning a new language or playing a musical instrument has a positive impact on cognitive function in the aging brain, researchers report

#neuroscience
https://t.co/QELNPMFRiS

[Corrin Jackson @AmbitioninLif]

#CLN2 community will #advocate for their children. We won’t stop #FDA #fightingforcln2 #theskyisfalling #thisismyreality #genetherapy #regenxbio
#raredisease #rarevoice #cureraredisease #rareadvocacy #raremom #advocacy #batten #bdsra #NEVERSTOP #savemydaughter #outsideforevelyn

[Corrin Jackson @AmbitioninLif]

Love notes from #SpecialEducation #Teachers about my #specialneeds #Daughter #autistic #autism #sensoryprocessingdisorder #cln2 #batten #fightingforcln2 #GeneTherapy #specialneedmom #raremama #Speech #SLP #regression #needacure #savethechildren #fda #regenxbio @US_FDA @REGENXBIO

[BDSRA Foundation @BDSRA]

CLN2 Batten Community, we are asking you to engage FDA to request an opportunity in which families could speak directly to the FDA about unmet medical needs, the push for new therapies, etc. Visit:https://t.co/5qUfxIQkL0 to learn more about patient listening sessions. #FDA #CLN2

[REGENXBIO @REGENXBIO]

It may take months or years before children with #CLN2 start showing symptoms. Learn more here: https://t.co/OgrXiLgFsP