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 neurodegenerative disorder that generally has global developmental delay and affects a very small number of boys and girls around the world. Specifically, only 3 cases are known in Spain, such as the case of little Alberto. Columbus Children’s Foundation, Columbus Foundation, Elpida Therapeutics and the leading manufacturer of adeno-associated virus (AAV) vectors for gene therapy domiciled in San Sebastián, Viralgen Vector Core, have joined forces to develop a treatment that is now undergoing a clinical trial in the United States and that from January 2024 will begin a trial in Osakidetza, at the Pediatric Service of the Donostia University Hospital and at the BioGipuzkoa health research institute. Children affected by the disease from Spain, Germany and Italy will participate in this clinical trial. Please join us in supporting the urgent cause to provide medical treatment for children suffering from SPG50.

Ticket sales coming soon…

Donations gratefully accepted through “Row 0” – Santander Bank, ES73 0049 6668 3424 1628 2325 – BIZUM 07707

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 pledge.

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 the second year of CCF’s bracelet launch. In 2021, a black onyx bracelet with the word “RARE” was launched. This year, the featured word on the bracelet is “HOPE.” 

CCF aims to bridge the treatment gap for children living with ultra-rare genetic diseases by helping to develop a cure and accelerating access to gene therapy treatments, giving children and their families hope to live their lives to the fullest. 

Campaign link:

Learn more about CCF: 

All-Stars For Cures

February 5th, 2022 from 4-8 PM

During the 2022 NHL All-Star weekend, join us for a casual evening to learn more about changing the odds for kids with rare disease.

Hosted By: Tim + Debbie Tyson

Co-Hosted By: Phil + Karin Housley and Tommy + Reide Powers

Blues great Joe Bonamassa teams up with Columbus Children’s Foundation in exclusive fundraiser to benefit children with Ultra-Rare Genetic Diseases

Joe Bonamassa and Friends Ultra Rare Celebrity Jam set for October 1-3 at the Iconic Sunset Marquis Hotel in West Hollywood

Chapel Hill, North Carolina, June 10, 2021 – Columbus Children’s Foundation (CCF), an organization dedicated to bringing treatments and cures to children with ultra-rare genetic diseases, is staging an exclusive fund-raising event with world renowned blues guitarist Joe Bonamassa. A sponsor-only event, set for October 1st – October 3rd,, Joe Bonamassa and Friends Ultra Rare Celebrity Jam will take place at West Hollywood’s Sunset Marquis, an iconic location known for its deep ties to many of the most notable names in entertainment.

Joe Bonamassa will headline the weekend’s festivities and will perform on Saturday evening in an exclusive “jam session” where he, and other soon-to-be-named noteworthy musicians, will take the stage. All proceeds from this planned annual event will fund the development of treatments and cures for ultra-rare genetic diseases, some of which affect fewer than 50 children annually across the globe.

Recognized by his peers as a virtuoso guitarist with twenty-two #1 Billboard blues albums to his name, Grammy-nominated Joe Bonamassa commented, “No amount of success is bigger than the life of a child in need who suffers from a rare genetic disorder. If I can bend a few strings over a weekend and that can help change a child’s life, it is worth every minute of my time to bring hope closer to those kids.”

Started in 2017 in Valencia, Spain with U.S. headquarters in Chapel Hill, North Carolina, CCF brings an international network of scientific experts, technology resources, and affordable manufacturing capacity to expand equitable access for potentially life-saving treatment options for children with rare genetic diseases. CCF’s non-profit biotech model accelerates clinical processes to make treatments more immediately available to children whose life may otherwise end at an early age or be severely altered.

According to Dr. Krystof Bankiewicz, the world’s foremost expert on neurological genetic diseases and CCF’s CEO, “This event is incredibly important to raise awareness for CCF and for raising much needed funding to bring hope to the children and families we serve. Words cannot express our thanks to Joe for lending his name and talents to our event.”

A company or individual can sponsor and participate in the weekend long event at one of three levels. A double Platinum Record naming sponsor is available at $32,000, Platinum Record sponsors at $12,500, or Gold Record sponsors at $7,500. Details for sponsorship packages, which include all room nights at the Sunset Marquis and exclusive access to the Ultra Rare Jam, can be found at

According to Laura Hameed, CCF’s managing director, “Music is a wonderful tool to bring people together to advance the best of humanity and to bring real hope and treatments to kids with rare diseases across the globe.” Ms. Hameed continues, “This promises to be an amazing weekend long event. Based on our current commitments and the significant early level of interest, we expect to fill up quickly, especially with anticipated announcements of whom will be joining Joe for the celebrity jam.”

The Joe Bonamassa and Friends Ultra Rare Celebrity Jam is expected to be an annual event and is the premier fundraising event for CCF in the United States. For more information about the Joe Bonamassa and Friends Ultra Rare Celebrity Jam and to become a sponsor, visit or contact Laura Hameed at 612-437-8836 or Mark Rosenberg at 919-412-7378.

About Columbus Children’s Foundation (CCF)
CCF is an international childhood rare disease foundation with the mission is to ensure equitable and affordable access to the most effective gene therapy solutions for children with ultra-rare genetic diseases. CCF uses a nonprofit model, with science at its foundation and compassion at its core, to partner and accelerate gene therapy treatments for programs with very limited patient populations that are often overlooked because the economics don’t add up for those using a traditional commercial development model. Through strategic partnerships with other foundations, industry leaders, patient groups, and philanthropic donors, CCF aims to bring the scientific and funding resources together on behalf of the children and families who must endure the devastating outcomes of ultra-rare genetic diseases. CCF accelerates hope and transforms the lives of those fighting these devastating diseases. Learn more at

Media contact:

Mark Rosenberg • • 919-412-7378

Solidarity concert at the Prado National Museum

December 11, 2019

8:30 pm – 10:00 pm

Museo Nacional del Prado, Calle de Ruiz de Alarcón, 23 Madrid , 28014 Spain + Google Map

The Columbus Foundation, in collaboration with the Museo Nacional del Prado, has organized a solidarity concert on the occasion of its second anniversary. An exquisite and extraordinary experience that will take place next Wednesday, December 11, at 8:30 p.m. at the Museo Nacional del Prado, within the framework of its Bicentennial.

From the Columbus Foundation we combine art and science with the goal of saving lives. For this special event, we have the generous participation of great internationally renowned artists:

  • María José Montiel, mezzo-soprano
  • Iván Martín, piano
  • Ángel Luis Quintana, accompanied by the cello ‘Il Soldato’
  • And the space collaboration of Dr. Toni Pearson, at the piano

All tickets are sold for the charity gala, but  you can collaborate with FILA 0, through IBERCAJA: ES15 2085 9366 1303 3033 9645 or the donations section of the website .


Date: December 11

Hour: 8:30 pm – 10:00 pm


Columbus Foundation

Want Foundation


National Prado Museum

Calle de Ruiz de Alarcón, 23
Madrid , 28014 Spain + Google Map

Web page: