Our Latest News and Events
Our latest news
New gene therapy delivers treatment directly to brain
When Rylae-Ann Poulin was a year old, she didn’t crawl or babble like other kids her age. A rare genetic disorder kept her from even lifting her head. Her parents took turns holding her upright at night just so she could breathe comfortably and sleep. Then, months later. doctors delivered gene therapy directly to her…
Organizations Rally to Help Ukrainian Rare Disease Patients
The Columbus Children’s Foundation (CCF) and CureDuchenne are collaborating to raise money for a group in Gdansk, Poland, called Fundacja (Foundation) Parent Project Muscular Dystrophy, which is giving financial and medical assistance to boys with Duchenne muscular dystrophy (DMD) fleeing Ukraine.
‘Waking up for the first time.’ Can a new gene therapy change some children’s lives?
Five-year-old Boston Yannotti’s ear-to-ear smile masks what has been an extremely difficult childhood. The young boy, with reddish-brown hair and bright blue eyes like his mother, has been confined within the walls of his house for much of his life, unable to experience the world around him. A trip to the beach or the playground…
University College London begins preclinical studies to develop a treatment for Niemann Pick C disease with support from the Columbus Foundation
Madrid, February, 2021.- A new treatment for the rare and fatal neurodegenerative disease Niemann Pick C is closer. University College London (UCL) has just started a preclinical study that will make it possible in the future to apply gene therapy to patients in a clinical trial. This project is done in collaboration with the Columbus…
Her Body was a prison: How a new gene therapy change the lives of two Canadian girls
TORONTO — A new gene therapy for an extremely rare disorder has offered two Canadian children a new chance at life, allowing them to move on their own after years of being trapped within their own bodies.The disease is called AAV deficiency, and known more commonly as ‘pediatric Parkinson’s’. It’s a debilitating genetic disorder that…
Columbus Children’s Foundation (CCF) and Viralgen Vector Core announce “Target 10” Program
Organizations unite to develop effective gene therapy treatments bytaking aim at accelerating treatments for ten rare diseases San Sebastian, Spain and Raleigh, NC (February 25, 2021) – Columbus Children’s Foundation (CCF), an international childhood rare disease foundation with the mission to accelerate access to the most effective gene therapy cures for children suffering from ultra-rare diseases and Viralgen…
Our latest events
Score a goal for SPG50!
On July 29 at 6:00 p.m., at the Reale Arena Stadium (San Sebastián), Real Sociedad de Fútbol and Bayer Leverkusen will play a charity soccer match to benefit Columbus Children’s Foundation, Columbus Foundation and efforts to cure the rare disease SPG50. Funds raised during the charity match will go towards conducting a clinical trial for Spastic Paraplegic Type 50 or SPG50, a slowly progressing…
Rocket Mortgage Classic
The Rocket Mortgage Classic is BACK and happening July 28th -31st. Columbus Children’s Foundation is excited to be part of the Birdies for Charity program and raise funds through birdies made by PGA TOUR Players! Join the fun and help save lives!! Click the link below or in our bio to make your per birdie…
Accelerating HOPE – Rare Disease Day
Rare Disease Day is February 28, 2022. Columbus Children’s Foundation in collaboration with Realia by Jen are excited to announce their launch of this year’s bracelet, featuring the word “HOPE.” This will involve a social media campaign to spread awareness for children living with ultra-rare genetic diseases. This is set to launch on Rare Disease Day. This is…