The 6th World Conference on CDG: July 21-23, 2023
The in-person 6th World Conference on CDG is taking place at NOVA School of Science and Technology, FCT NOVA in Caparica, Portugal. It will be the largest ever global gathering of People Living with CDG (PLwCDG), caregivers, healthcare professionals, and the pharmaceutical industry. It is the most complete and resourceful international conference focused entirely on CDG.
Farrah was diagnosed with CDG 1A at the age of eight months. She lived in Fort Nelson, British Columbia where she battled this rare disorder. Her parents Jason and Kelsey had bracelets made to help fund research and to raise awareness of CDG. Please help support children like Farrah who live with CDG by purchasing one of these bracelets for $5. All profits will go directly to CDG research. To get your bracelet please contact firstname.lastname@example.org.
Established in 2012, The FoG Cup has been Foundation Glycosylation's most outstanding fundraising event... that's why we have a page dedicated to the antics, fun and friendships.
Congratulations to our winners! The raffle raised $500. We thank Scott Pellerin, director of player development for the Toronto Maple Leafs for donating the signed Morgan Reilly jersey. We thank Ernie Tremblay for donating the signed and framed Wayne Gretzky retirement picture.
First prize winner - Karen Basque
Second prize winner - Austen Underhill
Farrah was diagnosed with CDG 1A at the age of eight months. She lives in Fort Nelson, British Columbia where she battles this rare disorder. Her parents Jason and Kelsey had bracelets made to help fund research and to raise awareness of CDG. Please help support Farrah and other children who live with CDG by purchasing one of these bracelets for $5. All profits will go directly to CDG research.
To get your bracelet please contact email@example.com.
Susie and Tim Wanamaker's (currently residing just outside Pittsburgh, PA) life is defined by 3 amazing children. Madon, age 4, was diagnosed with CDG-ALG8 (1h) in December 2014. CDG -ALG8 is a very rare form of CDG with approximately only 10 out of 25 children diagnosed still living. Madon is the youngest of 3 wonderful siblings. Madon faces medical as well as developmental obstacles in his life. He is beginning to walk independently; However, walks best with supports. He uses few verbal words, but uses sign language. He is currently learning to use an iPad or pictures to talk. He understands most of what you say to him. Madon has many medical barriers in his life: bleeding and clotting disorder, epilepsy, elevated liver counts, pericardial effusion and newly diagnosed: sub aortic membrane. Madon loves people, music, sports, and being a part of the action in this busy house. His siblings are wonderful. His brother TJ loves people, hockey, sports, and just finished a fundraiser in honor of CDG. His sister, Maya is a great helper to Madon. She loves music, volleyball and traveling.
As a family, we continue to raise awareness of CDG with an ongoing fundraiser: vinyl CDG stickers. Our wonderful friend makes them for us at www.facebook.com/signedbychelle. For more information on CDG vinyl stickers, please contact firstname.lastname@example.org.
The 5th annual "Blue Sky Collective" was held on August 15th, 2015 and featured a variety of local bands. Approximately $6,500 was raised throughout the day and all proceeds were generously donated to the FoG in memory of Scott "The Crow" Crawford. This money will support research for therapies to help Maria Webster and others living with Congenital Disorders of Glycosylation (CDG). Thank you to all who attended and donated! A special thanks to Jason and Cora Underhill for hosting the event and Mexicali Rosa's for donating such great food.
The Port City Dance Academy has presented The Nutcracker & the Girl With the Shell at the Saint John High School each fall from 2012-2014. These shows have helped with CDG awareness in the local community and each year a portion of the proceeds are donated to the FoG. The performances have raised about $1750 (2012), $1200 (2013), and $750 (2014). Thank you for your hard work and generosity! Photographs of The Nutcracker are located below.
Maria's kindergarten classmates at Lakefield Elementary School crafted and sold decorative cards to help raise money for the FoG. Her class was able to collect over $600! Thank you for your hard work and thoughtfulness!
Foundation Glycosylation extends a heartfelt thank you to Dick Emmerson of Emmerson Pools and to all those who give generously to the FoG.