@projectCASK

An innovative rare disease non-profit driving breakthroughs in treatments and a cure for CASK gene disorders.

linktr.ee/ProjectCASK
Joined August 2023
  • Tweets138
  • Following61
  • Followers31
107Media
Loving our children exactly as they are does not mean asking less of science. “What Love Asks of Science” — CASK’s spotlight in RARE Revolution Magazine’s X-linked disorders edition. This article belongs to all of you. 🦁🦄 🔗projectcask.org/what-love-as…
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Roar 2026: The CASK Conference sponsors — we are so grateful. 🦁🦄🩷 🥇 Welch Packaging 🥈 Friends & Fans · Pulliam Family · St. Claire 🥉 Kubo · Little Stars · Schulz · Takehara Matos 🦁 Abram's Nation · Bella Burkhart · Lucas Project · Tobii Dynavox · Whisk · Zakel
Roar 2026 The CASK Conference sponsor thank you graphic. Gold: Welch Packaging. Silver: Friends and Fans of Special Athletes, The Pulliam Family, The Debbie Sukin Family, St. Claire HealthCare. Bronze: The Kubo Family, Little Stars Pediatric Center, The Schulz Family, The Takehara Matos Family. Roar Sponsors: Abram's Nation, Bella Burkhart Memorial Fund, The Lucas Project, Tobii Dynavox, WHiSK, The Zakel Family. Presented by Project CASK and Project CASK Canada.

ALT Roar 2026 The CASK Conference sponsor thank you graphic. Gold: Welch Packaging. Silver: Friends and Fans of Special Athletes, The Pulliam Family, The Debbie Sukin Family, St. Claire HealthCare. Bronze: The Kubo Family, Little Stars Pediatric Center, The Schulz Family, The Takehara Matos Family. Roar Sponsors: Abram's Nation, Bella Burkhart Memorial Fund, The Lucas Project, Tobii Dynavox, WHiSK, The Zakel Family. Presented by Project CASK and Project CASK Canada.

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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.
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Honored to welcome @AbramsNation, creator of The Safety Sleeper, as a sponsor of Roar 2026. Founded by a mother who solved a problem for her own family and changed lives in the process. "Every child has a unique need and a specialized piece of equipment can change a life."
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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: link.cnbc.com/public/4745021…
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We are honored to welcome @WelchPackaging 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. 💙🩷
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Roar 2026 just got more delicious. 🍵 Whisk Matcha Bar; a Houston matcha café steps from Texas Children's Hospital, is bringing handcrafted matcha drinks to our families at the conference.⚡💚  Thank you for your sponsorship Whisk!
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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 special child led them to us. Thank you, Little Stars. 🗓️ Nov 10–12 📍 Houston, Texas
 🔗 projectcask.org/2026-cask-co…
Roar 2026 The CASK Conference sponsor announcement graphic. Pink to gold gradient header reads "Roar 2026 The CASK Conference — Sponsor Announcement." Little Stars Pediatric Center logo displayed with three illustrated smiling star characters in blue, yellow, and pink. Pink banner reads "In-Kind." Project CASK and Project CASK Canada logos at bottom right.

ALT Roar 2026 The CASK Conference sponsor announcement graphic. Pink to gold gradient header reads "Roar 2026 The CASK Conference — Sponsor Announcement." Little Stars Pediatric Center logo displayed with three illustrated smiling star characters in blue, yellow, and pink. Pink banner reads "In-Kind." Project CASK and Project CASK Canada logos at bottom right.

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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…
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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 secure.ssa.gov/POMS.NSF/lnx/…
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We are deeply honored to announce the Pulliam family as a Silver Sponsor of Roar 2026: The CASK Conference. "We believe in this community, its goodness, and its promise. Until we meet again, we have more to do here on earth." - The Pulliam Family
Roar 2026 The CASK Conference sponsor announcement graphic. Pink to gold gradient header reads "Roar 2026 The CASK Conference — Sponsor Announcement." Photo shows two adults smiling outdoors with a young woman with CASK gene disorder seated in a wheelchair between them. Text reads "Silver — Dave, Kim and Shea Pulliam." Project CASK and Project CASK Canada logos on right side.

ALT Roar 2026 The CASK Conference sponsor announcement graphic. Pink to gold gradient header reads "Roar 2026 The CASK Conference — Sponsor Announcement." Photo shows two adults smiling outdoors with a young woman with CASK gene disorder seated in a wheelchair between them. Text reads "Silver — Dave, Kim and Shea Pulliam." Project CASK and Project CASK Canada logos on right side.

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Roar 2026 Science Day speaker lineup is taking shape. 🧬 11 confirmed researchers and clinicians united by one goal: treatments for CASK gene disorders. November 11 · Texas Children’s Hospital · Houston Early bird pricing through September 30. 🔗 projectcask.org/2026-cask-co…
Roar 2026: The CASK Conference Science Day Speakers graphic. Texas Children's Hospital. headshots of: Dr. Matthew Anderson, Oxford-Harrington Rare Disease Centre; Dr. Stephanie DeLuca; Dr. Matthew Fuller, Ultragenyx; Dr. Allison Knoll, Fractional Scientific Director; Dr. Hans-Jürgen Kreienkamp; Dr. Konark Mukherjee,; Dr. ChangHui Pak, UMass; Dr. Katsuhiko Tabuchi, Shinshu; Dr. Mingshan Xue, Baylor College of Medicine; Dr. Sarika Srivastava, U of Alabama at Birmingham Presented by Project CASK

ALT Roar 2026: The CASK Conference Science Day Speakers graphic. Texas Children's Hospital. headshots of: Dr. Matthew Anderson, Oxford-Harrington Rare Disease Centre; Dr. Stephanie DeLuca; Dr. Matthew Fuller, Ultragenyx; Dr. Allison Knoll, Fractional Scientific Director; Dr. Hans-Jürgen Kreienkamp; Dr. Konark Mukherjee,; Dr. ChangHui Pak, UMass; Dr. Katsuhiko Tabuchi, Shinshu; Dr. Mingshan Xue, Baylor College of Medicine; Dr. Sarika Srivastava, U of Alabama at Birmingham Presented by Project CASK

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CASK gene disorder is so rare that even experienced neurologists may never have seen it. Signs include microcephaly, low muscle tone, epilepsy, delayed development, limited speech, and feeding challenges. If this sounds familiar, visit projectcask.org/about-cask
Project CASK graphic titled "CASK Gene Disorder: What's it look like?" featuring nine photos of children with CASK gene disorder of varying ages, abilities, and backgrounds. Children are smiling, laughing, and posing. One child uses a wheelchair, another wears a hearing aid. Handwritten labels read: perseverant, joyful personality, undeniable beauty, rare as a unicorn, strong as a lion, loved, worthy. Project CASK logo at bottom.

ALT Project CASK graphic titled "CASK Gene Disorder: What's it look like?" featuring nine photos of children with CASK gene disorder of varying ages, abilities, and backgrounds. Children are smiling, laughing, and posing. One child uses a wheelchair, another wears a hearing aid. Handwritten labels read: perseverant, joyful personality, undeniable beauty, rare as a unicorn, strong as a lion, loved, worthy. Project CASK logo at bottom.

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We're thrilled to announce our Family Day keynote speaker: @jessronne ! Author, caregiver advocate, founder of @TheLucasProject, and host of Coffee with Caregivers. Mom of 8, including her son Lucas, who has profound disabilities. November 12. Houston, TX projectcask.org/2026-cask-co…
Roar 2026 The CASK Conference speaker announcement graphic. Black and white headshot of Jess Ronne, smiling woman with long hair and dangling earrings. Text reads: "Jess Ronne, Family Day Keynote Speaker. Topic: Be The Bison. jessthemess.com. Author, speaker, podcast host, producer, caregiver advocate and mother to Lucas who lives with profound disabilities. November 12, 2026, Texas Children's Hospital." Project CASK and Project CASK Canada logos at bottom.

ALT Roar 2026 The CASK Conference speaker announcement graphic. Black and white headshot of Jess Ronne, smiling woman with long hair and dangling earrings. Text reads: "Jess Ronne, Family Day Keynote Speaker. Topic: Be The Bison. jessthemess.com. Author, speaker, podcast host, producer, caregiver advocate and mother to Lucas who lives with profound disabilities. November 12, 2026, Texas Children's Hospital." Project CASK and Project CASK Canada logos at bottom.

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Our families are rallying. Your employer can too 🦁⚡️Roar 2026 already has its first Gold $10k sponsor! Know a company that belongs in this room? We have a sponsorship package ready to share. Email [email protected] to get started. 🔗 projectcask.org/2026-cask-co…
Roar 2026 The CASK Conference graphic featuring a computer monitor displaying a video call with nine CASK gene disorder families smiling and waving. Handwritten text reads "Texas Families Ready to ROAR!" Pink to yellow gradient header reads "Roar 2026, The CASK Conference, Texas Children's Hospital, Houston, TX." Project CASK and Project CASK Canada logos at bottom.

ALT Roar 2026 The CASK Conference graphic featuring a computer monitor displaying a video call with nine CASK gene disorder families smiling and waving. Handwritten text reads "Texas Families Ready to ROAR!" Pink to yellow gradient header reads "Roar 2026, The CASK Conference, Texas Children's Hospital, Houston, TX." Project CASK and Project CASK Canada logos at bottom.

Registration is officially OPEN for Roar 2026: The CASK Conference! The first-ever in-person scientific and family conference for the CASK gene disorder community. Nov 10–12, Houston, TX. Early bird pricing through September 30. Details: 🔗 projectcask.org/2026-cask-co…
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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: projectcask.org/impact #CASKgene
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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]
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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: projectcask.org/studies
Purple awareness ribbon graphic with text “World Purple Day March 26” and CASK gene disorder branding, supporting epilepsy awareness. Content for families and supporters of people with CASK and epilepsy to raise awareness and recognition of seizure disorders.

ALT Purple awareness ribbon graphic with text “World Purple Day March 26” and CASK gene disorder branding, supporting epilepsy awareness. Content for families and supporters of people with CASK and epilepsy to raise awareness and recognition of seizure disorders.

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ROAR Episode 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 later stages. A key insight into how research into CASK is evolving. youtu.be/FYr-ouXOKN4
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