Project CASK
@projectcask.bsky.social
#ProjectCASK is a nonprofit organization committed to developing treatments and finding a cure for #CASKgene disorders— ultra-rare, severe conditions affecting brain development that currently lack any available therapies.
Project CASK is honored to announce Dr. Huda Zoghbi as our opening keynote at Roar 2026: The CASK Conference.
Director of the Jan and Dan Duncan Neurological Research Institute at Texas Children's Hospital.
We are deeply grateful.
Director of the Jan and Dan Duncan Neurological Research Institute at Texas Children's Hospital.
We are deeply grateful.
September 17, 2026 at 8:54 PM
Project CASK is honored to announce Dr. Huda Zoghbi as our opening keynote at Roar 2026: The CASK Conference.
Director of the Jan and Dan Duncan Neurological Research Institute at Texas Children's Hospital.
We are deeply grateful.
Director of the Jan and Dan Duncan Neurological Research Institute at Texas Children's Hospital.
We are deeply grateful.
Cynthia Schulz, CASK advocate, author, and mama to the incredible Noni, is featured on CNBC Cures.
Cindy's fingerprints are all over the progress this community has made. We are so grateful for her. 🦁🦄
Read the full article: https://link.cnbc.com/public/47450216
Cindy's fingerprints are all over the progress this community has made. We are so grateful for her. 🦁🦄
Read the full article: https://link.cnbc.com/public/47450216
September 11, 2026 at 8:53 PM
Cynthia Schulz, CASK advocate, author, and mama to the incredible Noni, is featured on CNBC Cures.
Cindy's fingerprints are all over the progress this community has made. We are so grateful for her. 🦁🦄
Read the full article: https://link.cnbc.com/public/47450216
Cindy's fingerprints are all over the progress this community has made. We are so grateful for her. 🦁🦄
Read the full article: https://link.cnbc.com/public/47450216
We are honored to welcome Welch Packaging as a Gold Sponsor of Roar 2026: The CASK Conference. 🦁🦄✨
Their support is an investment in our families, hope, and the future of those impacted by CASK gene disorders.
Thank you, Welch Packaging. 💙🩷
Their support is an investment in our families, hope, and the future of those impacted by CASK gene disorders.
Thank you, Welch Packaging. 💙🩷
September 2, 2026 at 10:50 AM
We are honored to welcome Welch Packaging as a Gold Sponsor of Roar 2026: The CASK Conference. 🦁🦄✨
Their support is an investment in our families, hope, and the future of those impacted by CASK gene disorders.
Thank you, Welch Packaging. 💙🩷
Their support is an investment in our families, hope, and the future of those impacted by CASK gene disorders.
Thank you, Welch Packaging. 💙🩷
Little Stars Pediatric Center is providing nursing staff for Camp Roar at Roar 2026. 🩷
"She opened our hearts to a community we may never have otherwise known."
One very special child led them to us, and we are deeply grateful.
🗓️ Nov 10–12
📍 Houston, Texas
🔗 projectcask.org/2026-cask-conference
"She opened our hearts to a community we may never have otherwise known."
One very special child led them to us, and we are deeply grateful.
🗓️ Nov 10–12
📍 Houston, Texas
🔗 projectcask.org/2026-cask-conference
August 19, 2026 at 2:05 PM
Little Stars Pediatric Center is providing nursing staff for Camp Roar at Roar 2026. 🩷
"She opened our hearts to a community we may never have otherwise known."
One very special child led them to us, and we are deeply grateful.
🗓️ Nov 10–12
📍 Houston, Texas
🔗 projectcask.org/2026-cask-conference
"She opened our hearts to a community we may never have otherwise known."
One very special child led them to us, and we are deeply grateful.
🗓️ Nov 10–12
📍 Houston, Texas
🔗 projectcask.org/2026-cask-conference
New research supported by Project CASK estimates CASK gene disorder affects 1 in 48,000 to 1 in 175,000 children — the first population-based prevalence estimate ever.
Preprint now available. 🔗 medrxiv.org/content/10.64898/2026.08.11.26360119v1
Preprint now available. 🔗 medrxiv.org/content/10.64898/2026.08.11.26360119v1
August 18, 2026 at 5:29 PM
New research supported by Project CASK estimates CASK gene disorder affects 1 in 48,000 to 1 in 175,000 children — the first population-based prevalence estimate ever.
Preprint now available. 🔗 medrxiv.org/content/10.64898/2026.08.11.26360119v1
Preprint now available. 🔗 medrxiv.org/content/10.64898/2026.08.11.26360119v1
CASK-Related Gene Disorders have officially been added to Social Security’s Compassionate Allowances list and now have a dedicated entry in SSA’s Program Operations Manual System, or POMS.
CASK-Related Gene Disorders — POMS DI 23022.372
https://secure.ssa.gov/POMS.NSF/lnx/0423022372
CASK-Related Gene Disorders — POMS DI 23022.372
https://secure.ssa.gov/POMS.NSF/lnx/0423022372
August 12, 2026 at 6:25 PM
CASK-Related Gene Disorders have officially been added to Social Security’s Compassionate Allowances list and now have a dedicated entry in SSA’s Program Operations Manual System, or POMS.
CASK-Related Gene Disorders — POMS DI 23022.372
https://secure.ssa.gov/POMS.NSF/lnx/0423022372
CASK-Related Gene Disorders — POMS DI 23022.372
https://secure.ssa.gov/POMS.NSF/lnx/0423022372
Reposted by Project CASK
For CASK Gene Awareness Day, I teamed up with family to have a look at this rare genetic mutation in my niece and how an American family manages.
Hint, it's Medicare.
#caskgeneawareness
#caskgene
open.substack.com/pub/katialee...
CC: @projectcask.bsky.social
@caskresearch.bsky.social
Hint, it's Medicare.
#caskgeneawareness
#caskgene
open.substack.com/pub/katialee...
CC: @projectcask.bsky.social
@caskresearch.bsky.social
Ana Sofia
A special newsletter for CASK Gene Awareness Day
open.substack.com
July 14, 2025 at 11:11 PM
For CASK Gene Awareness Day, I teamed up with family to have a look at this rare genetic mutation in my niece and how an American family manages.
Hint, it's Medicare.
#caskgeneawareness
#caskgene
open.substack.com/pub/katialee...
CC: @projectcask.bsky.social
@caskresearch.bsky.social
Hint, it's Medicare.
#caskgeneawareness
#caskgene
open.substack.com/pub/katialee...
CC: @projectcask.bsky.social
@caskresearch.bsky.social
Roar 2026 Science Day speaker lineup is taking shape .
Nov 11 · Texas Children’s Hospital · Houston
Confirmed speakers spanning gene therapy, synaptic biology, disease modeling, and translational neuroscience — united by one goal.
More speakers coming soon.
projectcask.org/2026-cask-conference
Nov 11 · Texas Children’s Hospital · Houston
Confirmed speakers spanning gene therapy, synaptic biology, disease modeling, and translational neuroscience — united by one goal.
More speakers coming soon.
projectcask.org/2026-cask-conference
July 23, 2026 at 2:00 PM
Roar 2026 Science Day speaker lineup is taking shape .
Nov 11 · Texas Children’s Hospital · Houston
Confirmed speakers spanning gene therapy, synaptic biology, disease modeling, and translational neuroscience — united by one goal.
More speakers coming soon.
projectcask.org/2026-cask-conference
Nov 11 · Texas Children’s Hospital · Houston
Confirmed speakers spanning gene therapy, synaptic biology, disease modeling, and translational neuroscience — united by one goal.
More speakers coming soon.
projectcask.org/2026-cask-conference
Roar 2026: The CASK Conference registration is open! Nov 10–12, Houston, TX. The first-ever in-person conference for the CASK gene disorder community — researchers, clinicians, and families. Three days of science, connection, and progress.
🔗 projectcask.org/2026-cask-conference
🔗 projectcask.org/2026-cask-conference
June 12, 2026 at 12:45 PM
Roar 2026: The CASK Conference registration is open! Nov 10–12, Houston, TX. The first-ever in-person conference for the CASK gene disorder community — researchers, clinicians, and families. Three days of science, connection, and progress.
🔗 projectcask.org/2026-cask-conference
🔗 projectcask.org/2026-cask-conference
In 2025, something shifted. 11 studies. Multiple continents. Families, researchers, donors, and coordinated work across models, data, and strategy. In 2025, the science for CASK gene disorder began to move as one. Read the full impact report: https://www.projectcask.org/impact #CASKgene
April 8, 2026 at 12:10 PM
In 2025, something shifted. 11 studies. Multiple continents. Families, researchers, donors, and coordinated work across models, data, and strategy. In 2025, the science for CASK gene disorder began to move as one. Read the full impact report: https://www.projectcask.org/impact #CASKgene
Introducing Project CASK Canada — our first global affiliate. One SAB. One Roadmap. One community that refuses to wait. For every Liocorn, everywhere. Interested in affiliating? [email protected]
April 7, 2026 at 7:17 PM
Introducing Project CASK Canada — our first global affiliate. One SAB. One Roadmap. One community that refuses to wait. For every Liocorn, everywhere. Interested in affiliating? [email protected]
Today is #PurpleDay 💜 For families with CASK gene disorders, epilepsy awareness is a 365-day journey. We stand with our community in the fight for research & a healthy future.
Take action: Please consider joining the CASK epilepsy study:
https://www.projectcask.org/studies
Take action: Please consider joining the CASK epilepsy study:
https://www.projectcask.org/studies
March 26, 2026 at 6:36 PM
Today is #PurpleDay 💜 For families with CASK gene disorders, epilepsy awareness is a 365-day journey. We stand with our community in the fight for research & a healthy future.
Take action: Please consider joining the CASK epilepsy study:
https://www.projectcask.org/studies
Take action: Please consider joining the CASK epilepsy study:
https://www.projectcask.org/studies
ROAR Ep. 12 Why multiple treatments for cerebellar degeneration in CASK? It’s not one broken pathway but a chain of disruptions, creating multiple chances to intervene from early to downstream stages. A must-listen for families, clinicians, researchers following progress https://youtu.be/FYr-ouXOKN4
February 19, 2026 at 2:05 PM
ROAR Ep. 12 Why multiple treatments for cerebellar degeneration in CASK? It’s not one broken pathway but a chain of disruptions, creating multiple chances to intervene from early to downstream stages. A must-listen for families, clinicians, researchers following progress https://youtu.be/FYr-ouXOKN4
New research into CASK:
Dr. Tibbe, Dr. Kreienkamp’s lab, and Dr. Pak’s lab uncover how CASK’s domains work together in a U-shaped structure to bind key partners like Neurexin. These insights help map treatment targets. onlinelibrary.wiley.com/doi/10.1111/...
Dr. Tibbe, Dr. Kreienkamp’s lab, and Dr. Pak’s lab uncover how CASK’s domains work together in a U-shaped structure to bind key partners like Neurexin. These insights help map treatment targets. onlinelibrary.wiley.com/doi/10.1111/...
December 4, 2025 at 8:02 PM
New research into CASK:
Dr. Tibbe, Dr. Kreienkamp’s lab, and Dr. Pak’s lab uncover how CASK’s domains work together in a U-shaped structure to bind key partners like Neurexin. These insights help map treatment targets. onlinelibrary.wiley.com/doi/10.1111/...
Dr. Tibbe, Dr. Kreienkamp’s lab, and Dr. Pak’s lab uncover how CASK’s domains work together in a U-shaped structure to bind key partners like Neurexin. These insights help map treatment targets. onlinelibrary.wiley.com/doi/10.1111/...
With just one click, you can give your child’s doctor a full view of their medical journey.
@Citizen.Health not only powers research into CASK, it supports better, more coordinated care for your loved one.
www.citizen.health/partners/project-cask
@Citizen.Health not only powers research into CASK, it supports better, more coordinated care for your loved one.
www.citizen.health/partners/project-cask
June 16, 2025 at 5:37 PM
With just one click, you can give your child’s doctor a full view of their medical journey.
@Citizen.Health not only powers research into CASK, it supports better, more coordinated care for your loved one.
www.citizen.health/partners/project-cask
@Citizen.Health not only powers research into CASK, it supports better, more coordinated care for your loved one.
www.citizen.health/partners/project-cask
Our 2024 Impact Report is here! Thanks to YOU, we made incredible strides toward treatments for CASK gene disorders:
🧬 4 groundbreaking studies initiated
💰 $631,408 committed to CASK research
🤝 Global collaboration
📖 Read the full report here: www.projectcask.org/impact
#KickCASK #CureCASK
🧬 4 groundbreaking studies initiated
💰 $631,408 committed to CASK research
🤝 Global collaboration
📖 Read the full report here: www.projectcask.org/impact
#KickCASK #CureCASK
March 20, 2025 at 8:38 PM
Our 2024 Impact Report is here! Thanks to YOU, we made incredible strides toward treatments for CASK gene disorders:
🧬 4 groundbreaking studies initiated
💰 $631,408 committed to CASK research
🤝 Global collaboration
📖 Read the full report here: www.projectcask.org/impact
#KickCASK #CureCASK
🧬 4 groundbreaking studies initiated
💰 $631,408 committed to CASK research
🤝 Global collaboration
📖 Read the full report here: www.projectcask.org/impact
#KickCASK #CureCASK
SAVE THE DATE!!!
This coming Mother’s Day week, we’re celebrating the incredible moms in the CASK community with THE MOTHER OF ALL ART SHOWS — an exhibition and auction featuring 30 original works by acclaimed artists (and some talented CASK mamas, papas, grandpas, grandmas, aunties and uncles!)
This coming Mother’s Day week, we’re celebrating the incredible moms in the CASK community with THE MOTHER OF ALL ART SHOWS — an exhibition and auction featuring 30 original works by acclaimed artists (and some talented CASK mamas, papas, grandpas, grandmas, aunties and uncles!)
March 12, 2025 at 7:32 PM
SAVE THE DATE!!!
This coming Mother’s Day week, we’re celebrating the incredible moms in the CASK community with THE MOTHER OF ALL ART SHOWS — an exhibition and auction featuring 30 original works by acclaimed artists (and some talented CASK mamas, papas, grandpas, grandmas, aunties and uncles!)
This coming Mother’s Day week, we’re celebrating the incredible moms in the CASK community with THE MOTHER OF ALL ART SHOWS — an exhibition and auction featuring 30 original works by acclaimed artists (and some talented CASK mamas, papas, grandpas, grandmas, aunties and uncles!)
Today is International Epilepsy Day - a day to promote awareness of epilepsy around the world.
On this day, we honor those in our CASK community and beyond who live with seizures, and we call on everyone to raise awareness of the impacts of epilepsy in daily life.
On this day, we honor those in our CASK community and beyond who live with seizures, and we call on everyone to raise awareness of the impacts of epilepsy in daily life.
February 11, 2025 at 12:38 AM
Today is International Epilepsy Day - a day to promote awareness of epilepsy around the world.
On this day, we honor those in our CASK community and beyond who live with seizures, and we call on everyone to raise awareness of the impacts of epilepsy in daily life.
On this day, we honor those in our CASK community and beyond who live with seizures, and we call on everyone to raise awareness of the impacts of epilepsy in daily life.
Introducing our limited edition Roar for Rare apparel!
Show your colors this #RareDiseaseday because our Liocorns are more than anyone could imagine.
To receive by 2/28 place your order by:
2/17 for domestic
2/12 for international
www.projectcask.org/category/all...
@rarediseasedayofficial
Show your colors this #RareDiseaseday because our Liocorns are more than anyone could imagine.
To receive by 2/28 place your order by:
2/17 for domestic
2/12 for international
www.projectcask.org/category/all...
@rarediseasedayofficial
Project CASK| Shop | Rare Disease Day
Welcome to our Liocorn Shop, where up to 50% of all purchases give back to Project CASK to fund a treatment and cure for our loved ones. Shop our official merchandise today, because doing great never ...
www.projectcask.org
February 4, 2025 at 9:43 PM
Introducing our limited edition Roar for Rare apparel!
Show your colors this #RareDiseaseday because our Liocorns are more than anyone could imagine.
To receive by 2/28 place your order by:
2/17 for domestic
2/12 for international
www.projectcask.org/category/all...
@rarediseasedayofficial
Show your colors this #RareDiseaseday because our Liocorns are more than anyone could imagine.
To receive by 2/28 place your order by:
2/17 for domestic
2/12 for international
www.projectcask.org/category/all...
@rarediseasedayofficial
From all of us at #ProjectCASK, thank you. Your generous support throughout the year and specifically our 2024 End of Year campaign means more to us—and to the children and families in #CASKgene community—than words can express. We are energized to scale our efforts in 2025!! For the kids, forever.
February 3, 2025 at 7:55 AM
From all of us at #ProjectCASK, thank you. Your generous support throughout the year and specifically our 2024 End of Year campaign means more to us—and to the children and families in #CASKgene community—than words can express. We are energized to scale our efforts in 2025!! For the kids, forever.