Lisa Manaster

Mama to my amazing kids - one of whom has a CACNA1A genetic variant. Co-founder of a foundation working to find a cure for CACNA1A-related diseases

[CACNA1A Foundation @cacna1a]

Thrilled to announce that we have awarded @HColecraft @ColumbiaMed a grant for his research to develop a treatment potentially applicable to all #CACNA1A mutations. Thanks to a $25,000 restricted donation, we were able to provide more funding than our typical seed grants.

[Lisa Manaster @lbhmana]

Wonderful opportunity and honor to tell our story @RFK_CERC Best part was seeing @HeatherDSnell and @PeriKurshan

[Heather Snell, PhD @HeatherDSnell]

Such a great day of advocacy and research presentations, but the highlight was running into @lbhmana and hearing her talk about all the amazing things the @cacna1a is doing! So excited to continue our relationship and research in my lab! ❤️

[Lisa Manaster @lbhmana]

@HeatherDSnell @PangkongFox @cacna1a Excited for what’s to come!

[CACNA1A Foundation @cacna1a]

Thank you to Dr. Ondrasik, pediatrician & #CACNA1A mom, for urging pediatricians to learn more about #GeneticTesting and to offer and advocate for WES for patients w/dev delays in today’s @statnews piece. We must end the #rare diagnostic odyssey earlier.

https://t.co/img8bbJN6w

[Lisa Manaster @lbhmana]

Enjoying meeting pediatric ophthalmologists and raising awareness of the earliest sign of our disease!

[CACNA1A Foundation @cacna1a]

👀Are you at @AAPOSeye #AAPOS2023? Stop by our booth with @MalanSyndrome to learn more about the eye movement disorders that are some of the earliest markers of #CACNA1A. 55% of our Nat History Study participants report eye disorders such as paroxysmal tonic upgaze and nystagmus.

[Lisa Manaster @lbhmana]

@cacna1a @MDBRide4Rare I’m on vacation and making sure I get my miles in! #springbreak #sunandfun @doradobeach @MDBRide4Rare #curecacna1a

[Lisa Manaster @lbhmana]

Our latest initiative-calcium channels unite!

[CACNA1A Foundation @cacna1a]

We are thrilled to be working w/ patient advocates from the #CACNA1C, #CACNA1D, #CACNA1E, #CACNA1F, #CACNA1H and #CACNA1S communities on the Voltage-Gated Calcium Channel Collective (@TheVGCCC). We have already seen a lot of excitement from researchers on this collaboration.

[Lisa Manaster @lbhmana]

Not much more I can add to this...except @cacna1a
Huge congrats to Dr. Chung!

[Luke Rosen @lukebrosen]

Awesome news for the rare disease community, Amazing human, #relentless passionate advocate for all families. Dr. Chung is teeming with empathy, passion, innovation, & love for her patients. A remarkable leader & pillar of community @KIF1A @BostonChildrens https://t.co/toMkIsuMaX

[Lisa Manaster @lbhmana]

Honored to be included with these incredible moms fighting for their kids! And a huge thank you to the Einstein/Montefiore team for everything you do! https://t.co/f8i1iSLLkO

[CACNA1A Foundation @cacna1a]

Thank you to @EinsteinMed for highlighting these fearless #RareDisease moms and their incredible work as patient advocates, including our own CoFounder & President @lbhmana! #CACNA1A

[Lisa Manaster @lbhmana]

@SThompson787 Congratulations, Samantha! Thrilled for you!

[Lisa Manaster @lbhmana]

Want to ride? Please join Team CACNA1A. What an honor to be a part of this amazing event.

[UPenn Million Dollar Bike Ride by ODC @MDBRide4Rare]

Registration is opening soon! Stay tuned for the exact date and details! Can't wait to see you for year 10! #pennmedmdbr2023 #mdbr #raredisease #rarediseaseresearch

[Lisa Manaster @lbhmana]

So full of gratitude for the opportunities, support and guidance from @ChanZuckerberg and their amazing team!

[CACNA1A Foundation @cacna1a]

At today's @cziscience #RareAsOne mtg, @lbhmana highlighted our 2022 accomplishments for the #CACNA1A community, thanks to @ChanZuckerberg support. As we heard today, it is easy to lose sight of all that we have done when there is so much more to do. Nice to have time to reflect.

[Lisa Manaster @lbhmana]

@PedsGCAbby Thanks for sharing! We’re gearing up for #curecacna1a Awareness Day.

[Lisa Manaster @lbhmana]

Honored and thrilled that @cacna1a was invited to be be a part of MDBR 2023! Please join our team!!

[UPenn Million Dollar Bike Ride by ODC @MDBRide4Rare]

Congrats to the 2022 #MDBR grant awardees! 37 projects were funded with $2.6M raised for 30 #rarediseases. Thank you to our MDBR community for their fundraising & commitment to the cause. See the full list of projects here: https://t.co/tAH8qoEZZ3

[UPenn Million Dollar Bike Ride by ODC @MDBRide4Rare]

We are gearing up for year 10! Mark those calendars & we will see you real soon! #PennMedMDBR2023 #raredisease #cycling #philadelphia

[CACNA1A Foundation @cacna1a]

Will you be at the #BiotechShowcase tomorrow? We are honored to have been selected to screen our short documentary “Together, We Can Push Science Forward” on the origins of the #CACNA1A Foundation at the lunchtime session on Monday. Check it out! #CureCACNA1A @DisorderRare

[CACNA1A Foundation @cacna1a]

@OnceUponAGene @WendyKChung Thank you to @OnceUponAGene for having this important discussion and to @WendyKChung for guiding our org and leading our Natural History Study from the very beginning.

[Lisa Manaster @lbhmana]

@lukebrosen I’m so sorry.

[Lisa Manaster @lbhmana]

@CTDOT_District3 What’s going on?? We haven’t moved going north for 30 mins