Today, July 25, is the first-ever Genetic Testing Action Day! 🧬 Early testing can change lives. Talk to your doctor if you have developmental or medical concerns. Join the #StartGenetic movement + grab the free Parent Toolkit at

⏰ 24 HOURS LEFT! Join our Summer Quest with Citizen Health. 12 families in — goal is 25+. In 5 minutes you can:.✅ Organize your child’s records.💡 Power insights into CASK care.🎁 Enter to win one of five $250 gift cards. 👉

"Our human compassion binds us the one to the other - not in pity or patronisingly, but as human beings who have learnt how to turn our common suffering into hope for the future." -Nelson Mandela

Behind every breakthrough is a conversation. This month, Project CASK convened top CASK scientists under NDA to exchange bold ideas. Sparks flew. Connections formed. Promising paths emerged, including small molecules for cerebellar degeneration. Progress starts here.

$46,650 raised 🎉 Inspired by motherhood, fueled by art, and powered by love. The Ultra Rare Collection: Mother of All Art Shows gave our kids a fighting chance — and showed what’s possible when artists, donors & dreamers unite. Thank you to ALL involved!!

Thrilling news!! Bio tech @capsida announced the FDA IND application of CAP-002, a disease-modifying treatment for STXBP1.Dr. Xue led the research team that developed this gene replacement therapy, the same therapeutic approach he is working on for CASK.

🎥 The CASK Gene Replacement Webinar with Dr. Mingshan Xue is now available to watch!.💡 103 people registered—proof our community is all in for our kids’ future. Stay tuned for upcoming info on Drs. Krienkamp and Pak study Re: cerebellar degeneration.

ONLINE AUCTION NOW LIVE ⚡️ The #UltraRareCollection by #ProjectCASK presents: The Mother of All Art Shows. Ultra rare art to cure an ultra rare disease. Place a bid for the kids now through May 10.

A new gene replacement study for CASK is underway at Baylor—led by Dr. Xue & building on proven STXBP1 strategies. Hope for all CASK mutations—males, females, all types of mutations. Webinar April 30 | 5pm ET https://zoom.us/webinar/register/WN_-3tIK6sCRA6Im5HK4Vm2uw#/registration

Among the treasures to be featured at our Mother’s Day event will be this original Mayfield #Guitalin No. 12. You can see it here, played and refurbished by Nate Smith, owner of #mayfieldinstruments, and father of two beautiful daughters living with the CASK gene mutation.

Stephanie Salmon for Project CASK’s Ultra Rare Collection @printsbysalmon.We are honored to showcase these two deeply moving acrylic paintings by CASK mother Stephanie Salmon, in honor of her daughter Jessica. Acrylic on canvas:.“The Hour Glass” 20x 24.“Mother's Prayer” 20 x 24

Big news! 🎉 #ProjectCASK has earned @candiddotorg 's #PlatinumSealOfTransparency —the highest level of recognition for nonprofit accountability. We are fully committed to openness, responsible funding, and measurable impact in our fight to cure #CASKgene disorders.

Today, on Cerebral Palsy Awareness Day, we honor those living with CP 💚. Many individuals with a CP diagnosis have an underlying genetic condition—like CASK gene disorders—that often goes undetected. Join us in recognizing their journey, and wear green in support!

🎙️✨ The latest episode of [ The Roar ] is here!. This episode, we’re diving into:. Rare Disease Day advocacy—thank you!. Research updates. The Ultra Rare Collection fundraiser @ultrararecollection. Federal budget cuts & advocacy for Medicaid.

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. Full report:

#KateNartker for the #UltraRareCollection art auction: innovative weaver, animator & mom. Blurring the boundary between memory and presence, honoring the maternal instinct to preserve & hold onto the moments of motherhood. “Window” 28 x 42”, woven cotton mounted on green pleather

SAVE THE DATE! This Mother’s Day week, we’re celebrating the incredible moms in the CASK community with THE MOTHER OF ALL ART SHOWS — an exhibition & auction featuring 30 original works by acclaimed artists (& talented CASK mamas, papas, grandpas, grandmas, aunties and uncles!)

Happy Rare Disease Day to our strong, magical Liocorns and their families around the world! Today, we ask you to join us in coming together to sign the @everylifeorg petition to urge Congress to continue their support and funding for our vulnerable communities. Link in bio.

🎧🦁 [The ROAR #7] has dropped! Listen in as Hitomi shares in more detail what’s to come in 2025 … We look forward to a promising 2025 together! .

Proud to share CASK mother Cynthia Schulz's book, Shine On. Practical, funny, heartwarming, Shine On is a book you can open again and again to feel connected, empowered, and certain you are exactly the parent your child needs. Grab your copy!