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. https://loom.ly/3LCJOlQ
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: https://acceleratehope.givesmart.com
Learn more about CCF: https://columbuschildren.org/who-we-are/
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
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 ultrararejam.com.
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 ultrararejam.com 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 www.columbuschildren.org
Media contact:
Mark Rosenberg • mark@trueparallel.com • 919-412-7378
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:
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 .
Details
Date: December 11
Hour: 8:30 pm – 10:00 pm
Organizers
Columbus Foundation
Want Foundation
Place
National Prado Museum
Calle de Ruiz de Alarcón, 23
Madrid , 28014 Spain + Google Map
Web page: https://www.museodelprado.es/
