Moving Mountains to cure Rare Disease

UK, May 12, 2024 – 7Newswire— To celebrate Ant Cornforth’s 60^th birthday, he’s taking on an epic challenge with a life-giving cause. He’s scaling 42 peaks in 24 hours, with over 106 kilometres of fell running and a cumulative elevation gain of 8,200 meters, to raise awareness and money for a cure for his five-year-old family friend, Tallulah Moon Whitrod.

Ant will be running the gruelling Bob Graham Round in the English Lake District next week, on May 19, 2024. While taking on “England’s Everest” might not be most 60-year olds’ idea of a celebration, Ant sees this as an opportunity to channel his passion for running into support for Genetic Cures for Kids (GC4K). Ant’s Australian friends Chris and Golden Whitrod, founded GC4K when their daughter Tallulah Moon suffered a severe regression from a rare neurodegenerative disease.

Tallulah suddenly lost her mobility, speech, and motor skills at just one year old, and she was diagnosed with SPG56 – a rare neurodegenerative disease without a cure.

Doctors told them that Tallulah’s condition would remain untreatable, despite the increasing potential of gene therapies for similar diseases, as ultra-rare diseases such as SPG56 don’t attract pharmaceutical investment support, leaving affected individuals and their families to navigate their journey alone.

The Whitrods were determined to find a cure for their daughter regardless of these challenges, and founded GC4K to fundraise the millions of dollars required to research, develop, test and manufacture a novel cure. #TallulahsArmy—a dedicated force of supporters – have tirelessly fundraised over the last three years. Their unwavering efforts have propelled them forward in the development of a treatment for clinical trials.

The charity is now poised to manufacture a pioneering gene therapy treatment, slated for clinical trials in 2025, and is tackling their latest mountain – a US$3 million price tag.

Ant commended the optimism and drive of the Whitrod family, in particular Tallulah, who tackles the disease with every ounce of her being in many hours of tailored therapies every week.

“You would think this devastating disease would cast a shadow over Tallulah’s future as it progresses, but there’s a light in Tallulah Moon that everyone sees through her smiling eyes, and her tenacity and courage against all the odds gives me strength to take on the BG Round,” Ant said.

Ant’s Facebook Fundraiser called ‘Milestone Mountain Mission’ seeks to rally support for Genetic Cures for Kids, offering hope to families all over the world, whose children live with SPG56. Every contribution, regardless of size, represents a significant step towards realising this vision of healing and transformation. With the potential to not only impact SPG56 but also lay the groundwork for addressing rare diseases worldwide, the importance of this cause cannot be overstated.

“By rallying for GC4K, we have the power to make a difference in the lives of these children like Tallulah who are tackling SPG56 and until now, had no hope for a treatment.” Ant said.

Golden Whitrod said Ant’s generosity of spirit was already being matched by the generosity of his many supporters, saying “Through this effort Ant has raised important awareness to a new cohort of mountain lovers and runners across Ireland and the UK and we are so grateful to see #TallulahsArmy grow.”

“His determination to push beyond personal limits serves as an inspiring testament to the resilience of the human spirit and the boundless potential for positive change,” Golden said.

To support Ant’s fundraiser for Genetic Cures for Kids visit his Facebook Fundraiser on this link https://www.facebook.com/donate/313539881610048 or search ‘Milestone Mountain Mission’ on Facebook.

To start a Facebook Fundraiser like Ant did, go to www.TallulahsArmy.Org or www.facebook.com/fund/ourmoonsmission/

To donate directly to Genetic Cures for Kids and its campaign ‘Our Moon’s Mission’ head to www.ourmoonsmission.org/donate/

 For media queries:
Golden Whitrod
golden@ourmoonsmission.org
+61449154411
Becky Hargrove
beckateen@gmail.com
+35 383 848 2564

 Additional Resources
Website: www.ourmoonsmission.org