Advancing Understanding and Treatment of Okur-Chung Neurodevelopmental Syndrome Through Groundbreaking Research

Grant funds research on cilia’s role in OCNDS, aiming to uncover key molecular changes and accelerate future treatment breakthroughs.


“This project represents an exciting leap forward in OCNDS research by building on prior findings that identify cilia as a critical focal point in understanding the biology of OCNDS.”

— Dr. Gabrielle Rushing, Chief Scientific Officer of the CSNK2A1 Foundation

SAN FRANCISCO, CA, UNITED STATES, EINPresswire.com The CSNK2A1 Foundation, a patient-centered 501(c)(3) nonprofit organization dedicated to advancing the understanding and treatment of Okur-Chung Neurodevelopmental Syndrome (OCNDS), is thrilled to announce the recipient of the CSNK2A1 2024 Million dollar bike ride grant.

“This project represents an exciting leap forward in OCNDS research by building on prior findings that identify cilia as a critical focal point in understanding the biology of OCNDS,” said Dr. Gabrielle Rushing, Chief Scientific Officer of the CSNK2A1 Foundation. “Through our recent participation in the Rare As One Cycle 3 cohort, funded by the Chan Zuckerberg Initiative, we’ve joined forces with other ciliopathy groups to advance collaborative research. Dr. Loukil’s work holds immense promise—not only to uncover the mechanisms behind specific CSNK2A1 gene mutations but also for providing insights that could benefit the broader rare disease community.”

OCNDS is a neurodevelopmental syndrome caused by a mutation in the CSNK2A1 gene, which plays a critical role in brain development and function. Individuals with OCNDS often experience a range of symptoms, including intellectual disability, developmental delays, autism, seizures, and various physical and behavioral challenges. By funding research that delves into the specific molecular changes caused by the gene mutation, the CSNK2A1 Foundation aims to drive progress in the understanding and treatment of this syndrome.

“I am deeply honored to receive the CSNK2A1 Million Dollar Bike Ride pilot grant,” said Dr. Loukil. “This support empowers us to investigate the fundamental role of primary cilia in OCNDS and how their disruption contributes to the condition’s underlying biology. We are excited to embark on this research, which brings us closer to unraveling the complexities of OCNDS and paving the way for future therapeutic advances. My heartfelt thanks to the Orphan Disease Center and the OCNDS community for their trust and dedication to this important work.” 

The Mexican drug cartel kidnapped my daughter and I dared to fight back

Real life “Taken” scenario see grieving mother turn vigilante

On Sunday morning on March 27, 2016, Miriam Rodriguez was hiding and holding a loaded .38 pistol near the Matamoros International Bridge, which links Matamoros, Mexico, and Brownsville, Texas. 

Wearing a baseball cap and trench coat, the 56-year-old mother-of-three was waiting for a member of the feared Zeta drug cartel known only as “The Florist. “

Two years prior, he had been one of 11 men involved in the kidnapping of her then 20-year-old daughter Karen. Now, Miriam was out for justice — and revenge.

Spotting the Florist near some street vendors, Miriam pulled her gun and seized the moment. She grabbed his shirt and jammed the pistol into his back. 

“’If you move, I’ll f–king shoot you,’ she said, going on to hold him at gunpoint and perform a citizen’s arrest until police arrived.

Author Azam Ahmed portrays this dramatic scene in the his new book “Fear Is Just A Word – A Missing Daughter, a Violent Cartel, and a Mother’s Quest for Vengeance” (Random House). It tells the story of how, for years, Miriam relentlessly pursued the men who had taken her daughter. 

It’s also the tale of how drugs, violence and lawlessness can all but take over a country, leaving its citizens to take the law into their own hands, just as Miriam did. 

“Criminals thrived on the permissiveness that fear allowed; she was a one-woman example of how things might be different,” writes Ahmed. “Miriam had said that fear was just a word. To the Zetas, it was much more than that.”

Miriam first learned of her daughter’s kidnapping when she was living and working as a housekeeper for a pair of doctors in McAllen, Texas, after she split up with husband, Luis, and moved north.

Read more at

https://nypost.com/2023/10/21/mom-fights-back-against-drug-cartel-who-kidnapped-daughter/

New Graphic Novel Here There Be Monsters Explores First Contact, Fear, and the Fragility of Humanity

Now Live on Kickstarter — A Century-Spanning Sci-Fi Epic with Political Intrigue, Cosmic Horror, and Dazzling Visuals

What happens when awe turns to fear—and contact becomes conflict? That’s the driving question behind Here There Be Monsters, an ambitious new graphic novel that launched on Kickstarter on July 28, 2025. Crafted by writer Perrin Hess and illustrator Roberta Ivi, this indie sci-fi saga is already turning heads with its bold scope, emotionally grounded storytelling, and jaw-dropping art.

Spanning the years 2022 to 2089, Here There Be Monsters unfolds in five interconnected books, tracing the ripple effects of humanity’s first contact with an alien species known as the Umbrans. But this is no simple tale of diplomacy or invasion—it’s a layered narrative exploring propaganda, political power, moral ambiguity, and the monsters we become in the face of the unknown.

“When humanity discovers an intelligent alien species, the initial awe quickly gives way to fear, propaganda, and war,” the creators explain. “Each of the novel’s five books explores a different facet of this evolving crisis.”

A Debut Decade in the Making

While Here There Be Monsters marks the firet published work for Perrin Hess, it’s far from his first story.

“This is by no means the first story I’ve ever written,” Perrin says, “but it is the first story I’ve ever put out into the world. So I suppose you could call this my professional debut—a big ‘first’ for sure.”

Collaborating with Brazilian artist Roberta Ivi, Perrin brings a unique script-first perspective to the project. Having fallen in love with screenplay formatting and visual storytelling early on, a graphic novel was a natural fit.

“I always imagined Here There Be Monsters as an animated mini-series,” he shares. “But the film and television industry is tricky to break into. A graphic novel was the next best option—and the most efficient way to actually produce my story and get it out into the world.”

Global Collaboration, Local Impact

Despite living on opposite ends of the Americas—Perrin in Vermont and Roberta in Brazil—the creative duo has fused their talents seamlessly. Their shared love of eerie science fiction, flawed characters, and stunning visual art radiates through every panel.

Book One is already complete, fully illustrated, and ready to print. The Kickstarter campaign is now seeking support to fund Book Two, offering backers a wide range of rewards: digital and print editions, exclusive behind-the-scenes content, acknowledgments, and limited-edition extras.

Inspirations Behind the Monsters

When asked about his biggest creative influences, Perrin offers a refreshingly eclectic list:

  • Love, Death, and Robots – “The way that show is done continues to inspire me… not just in terms of story and world-building, but in making something beautiful.”
  • Anthony Doerr (All the Light We Cannot See) – “He’s shown me how much beauty one can create with only words.”
  • Dungeons & Daddies (podcast) – “A silly, wacky time… but a constant inspiration for what’s possible for an independent creator.”

The result is a story that aims to entertain, unsettle, and inspire—proving that independent creators can craft worlds every bit as immersive and provocative as those backed by major studios.

Back It Today!

The Kickstarter for Here There Be Monsters runs until August 27, 2025. With a completed first volume, a clear roadmap, and an engaged creative team, this is one campaign that science fiction fans—and indie comic supporters—won’t want to miss.

https://www.kickstarter.com/projects/htbm/here-there-be-monsters

Instagram: @perrin___ and @roberta.ivi

UK Government Urges Wartime Prep as Expert Predicts Domestic Conflict

A stark warning from the UK government has gripped the nation, with the National Security Strategy urging Britons to “actively prepare” for war on home soil. 

By Preston Bates

The strategy, as reported by The Mirror and Daily Mail last week, outlines a perilous global landscape, citing Russian cyberattacks, Iranian sabotage, and potential disruptions to energy and supply chains. 

Prime Minister Sir Keir Starmer, addressing NATO leaders in The Hague, underscored the urgency, noting that Britain faces “very frequent and very serious” cyberattacks daily. The strategy calls for a wartime mindset, invoking the resilience of World War II, and demands a collective effort to safeguard critical infrastructure against adversaries like Russia, Iran, North Korea, and even China.

This alarming directive resonates chillingly with the warnings of Dr. David Betz, a professor of War Studies at King’s College London, who recently appeared on the Heretics podcast to discuss the looming specter of civil war in the UK. Betz, a respected academic known for his work on insurgency and information warfare, predicts a domestic conflict within five years, driven by deep societal fractures. 

Continue reading “UK Government Urges Wartime Prep as Expert Predicts Domestic Conflict”

New Summer Reads

5 Captivating New Summer Reads to Escape Into This Season

Whether you’re kicking back at the lake, road-tripping through the Rockies, or chasing quiet moments in your own backyard, there’s nothing like getting lost in a great book. This summer brings a fresh lineup of stories that deliver humor, heart, adventure, and a dash of soul-searching. From van life misadventures and epic fantasy battles to heartfelt YA romance and empowering poetry, these five new releases promise to keep your pages turning. Here’s what should be on your summer reading list right now.

Jackie Khalilieh’s You Started It delivers a sharp, heartfelt YA rom-com set against the streets of Toronto.
When seventeen-year-old Jamie Taher-Foster’s perfect senior year plan unravels after a breakup, she strikes an unlikely fake dating deal with Axel Dahini — a laid-back TikTok dancer she has nothing in common with. What begins as a scheme to win back her ex soon turns into a surprising journey of self-discovery, friendship, and first love. Smart, witty, and refreshingly honest, this is a story for anyone who’s ever had to rewrite their own story.

Michal Snaerravn expands his epic fantasy series with The Chronicles of Hadúr: The Golems of Beithir.
Amnon returns as the Blood Wars ignite and the races clash for control of Hell’s Gate. Beithir, now backed by the full might of the Druid Council, must complete one final, ruthless task: eliminate the Demonblood, Amnon. Dark assassins, forbidden magic, and the wrath of the Dark Gods converge in this gripping second volume of the saga.

Nilam Patel’s Into Her Wild is a luminous lyric poetry collection exploring healing, grief, self-love, nature, and the enduring strength of femininity.
Rich with natural imagery and intimate reflection, these poems trace a journey through loss, identity, and rediscovery. Blending personal experience with universal themes, the collection offers a resonant and timeless meditation on womanhood, self-acceptance, and the wild beauty within. A moving read for those seeking solace, empowerment, and connection to the natural world.

Tony Cond’s Rigged is a witty and heartfelt memoir about one man’s decades-long relationship with his classic wooden sailboat, Rufus.
What starts as a restoration project turns into a life-shaping adventure as Rufus weaves herself into the identity of a family. Set across Ontario and British Columbia, this humorous and nostalgic story celebrates sailing, family bonds, and the unpredictable journeys that define a life well-lived. A thoroughly Canadian tale for readers of all ages, whether mariners or armchair adventurers.

Andrew Singer’s Now Is the Time is a hilarious, heartfelt van life memoir about trading convention for freedom on the open road.
Newly jobless and lovestruck, Singer and his partner Sarah convert a plumber’s van into a tiny home and set out on a 13,000-mile trek across the American West. Pest invasions, wildfire escapes, and relationship-testing mishaps meet breathtaking landscapes and unexpected wisdom in this story of minimalism, healing, and self-discovery. A funny, tender reminder to stop scrolling and start living.

All featured books are available on Amazon.com

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