PRESS KIT | FOR IMMEDIATE RELEASE
Ultra Rare Collection: The Mother of All Art Shows
An Unprecedented Auction for an Ultra Rare Cause
Online Auction: May 1 – May 10, 2025
NYC Gallery Event: Saturday, May 3 | EDEN Studio NYC, Manhattan
Overview:
Introducing the Ultra Rare Collection — The Mother of All Art Shows
This May, just ahead of Mother’s Day, Project CASK returns with a bold new chapter in its acclaimed Ultra Rare Collection, a bold, first-of-its-kind online art auction where creativity meets urgency — and where every creative gesture helps forge a path toward hope for children living with one of the rarest neurological conditions in the world.
The Ultra Rare Collection is not just an art event—it’s an alliance for change. Created by Project CASK, a nonprofit driving cutting-edge research for CASK gene disorders, the auction transforms rarity from a medical curse into artistic inspiration, and raises critical funding for a future where no child is told there’s nothing that can be done.
This Year’s Theme: A Tribute to Motherhood
This year’s theme, The Mother of All Art Shows, curates 30 works of art that explore motherhood, caregiving, family, and love — the forces that drive us forward when the road is uncharted and the stakes are sky-high.
The Mother of All Art Shows honors the fierce, nurturing, relentless love of mothers navigating the unimaginable. From brushstrokes to bold color, from digital renderings to sculpture, every work reflects caregiving’s quiet power and maternal love’s monumental strength.
This year’s featured artists include:
Dan Bina
Viviane Maier Print
Josie Portillo
Rachel Romanowsky
Serge Seidlitz
Mojo Wang
…and more, including CASK parents artists
The art can be viewed at ultrararecollection.com
Gallery + Auction Details
📍Gallery Night in NYC
Saturday, May 3 | Doors: 2 PM & Reception: 5–8 PM
EDEN Studio NYC
508 West 26th Street, Studio 5A, New York
🌐 Online Auction
May 1–10 at ultrararecollection.com
All pieces are available for public bidding. Proceeds support urgently needed research and treatment development for CASK gene disorders.
About Project CASK
Project CASK is a parent-led, scientifically-guided nonprofit organization dedicated to finding treatments—and ultimately a cure—for CASK gene disorders, an ultra-rare and severe neurogenetic disorder that affects fewer than 400 children globally.
CASK gene disorders affect fewer than 400 people worldwide. They deny children abilities many take for granted — movement, speech, independence, good health — and they have no treatments or cure. Because of its ultra-rare status, therapeutic development for CASK is often overlooked by industry and underfunded by traditional research pipelines. As such, this work is only possible because of families, friends, and donors—many of them drawn in by events like the Ultra Rare Collection.
In 2024, through funds raised by the first Ultra Rare Collection and other efforts, Project CASK funded the first-ever gene replacement therapy study for the disorder at Baylor College of Medicine.
View our board members and leadership team here
View our Scientific Advisory Board here
About CASK gene disorders
The CASK gene is located on the X chromosome and provides instructions for making a protein called calcium/calmodulin-dependent serine protein kinase (CASK). The CASK protein is primarily found in nerve cells (neurons) in the brain, where it helps control the activity (expression) of other genes that are involved in brain development. It also helps regulate the movement of chemicals called neurotransmitters and of charged atoms (ions), which are necessary for signaling between neurons (Medline Plus, 2014).
Mutations in the CASK gene are associated with two main related disorders that impact brain development: microcephaly with pontine and cerebellar hypoplasia (MICPCH), and X-linked intellectual disability (XL-ID) with or without nystagmus. MICPCH typically causes more severe symptoms than XL-ID. Females have two copies of the X chromosome, whereas males only have one copy; thus, when males have a mutation on their CASK gene, they typically have more severe signs and symptoms than do females. Research suggests that the more severe MICPCH mostly affects females, likely because only a small number of males with MICPCH survive to birth (Medline Plus, 2014).
Media Highlights (Dec, 2023): The debut Ultra Rare Collection Glitter & Roar raised over $61,000 and was featured by:
7 December 2023 - CBS Philadelphia by Wakisha Bailey
A local family is looking to raise awareness about CASK, an incredibly rare genetic disorder that slows brain development. Fewer than 300 people around the world have been born with CASK...
19 November 2023 - ABC57 by Danté Stanton
The Stiglitz family of Goshen is looking to raise awareness to CASK, an incredibly rare genetic disorder that affects three-year-old Sophie Stiglitz. Only one in around 300 people are born with CASK, a disability that slows brain development...
9 December 2023 - KSBY/NBC by Katherine Worsham
10-year-old Cayucos girl is one of the few with a CASK gene mutation...
30 November 2023 - Little Black Book
Project CASK creates one-of-a-kind 'Ultra Rare Collection' with 26 celebrated artists for CASK, an ultra rare gene disorder...
3 December 2023
Jerry visits and subsequently shares about the first URC on his Instagram account
Why It Matters
There are over 10,000 known rare diseases, yet 95% have no treatment. About 30% of children with rare diseases will not live past the age of 5
Project CASK is not just building hope, it’s building a model for how rare disease communities can lead the charge in scientific innovation. It’s about what’s possible when mothers, artists, scientists, and communities come together to say — our children are not too rare to matter.
For more about CASK gene disorders visit https://www.projectcask.org/about-cask
Sponsors
The URC would not be possible without the generous support of partners and sponsors, including B&A creative management agency, EDEN Studio NYC, GeneScape, Humboldt Distillery, and Singing Serpent.
Media Contact
Hitomi Kubo
Co-founder and Senior Advisor To The Board
📧 hitomi@projectcask.org
📞 +1 (646) 465-2262
🌐 projectcask.org | @projectcask
🌐 ultrararecollection.com | @ultrararecollection
Esme’s story
The spark that led to Project CASK
Three days after her 1st birthday, Hitomi Kubo and Kevin Kearse, the parents of Esme, received life-changing news. Their daughter had a mutation on her CASK gene that explained the missed milestones and the small cerebellum picked up on an MRI several months earlier. The neurogeneticist read to them from a study, explaining that Esme would likely not walk, she would certainly not develop speech, and she would probably experience intractable seizures that might steal away any developmental gains she makes. They were told there were no treatments or cure, and not much they could do aside from physical, occupational and speech therapy to support her development.
In shock and unwilling to accept that nothing could be done, they found the CASK community Facebook group, read everything they could about CASK gene disorders, reached out to scientists, and enrolled Esme in as many therapies as possible. Along the way, Hitomi connected with another CASK gene parent, Renée Roquet, one of the administrators of the Facebook group and mama to Rooney, a 10-year-old with a CASK gene disorder. They became fast friends, starting a podcast for the CASK community to help build connections and share experiences. Feeling a strong sense of urgency to move the research needle, however, they realized they needed to do more. Together, they built a team of parents, outlined an ambitious business plan, and launched Project CASK less than 11 months after Esme’s diagnosis.
The Liocorn
Our motto: Rare as unicorns. Strong as lions.TM
Some say our kids had a better chance of winning the Powerball than being born with a CASK gene mutation. Some in the medial community call our kids "unicorns."
Unicorns are rare, magical, pure and innocent. That sounds a lot like our kids.
But there is so much more within our children, our families, and our community.
We possess the tenacity, strength and courage of lions. A fierce determination to move mountains to help our kids reach their true potential.
And from this, our spirit animal was born. The Liocorn TM.
