UPCOMING SYMPOSIUM AND CONFERENCE
The FoG is proud to be a PLATINUM SPONSOR for the upcoming Sanford Burnham Prebys Rare Disease Day Symposium & CDG Family Conference, to be held on March 1, 2024 in San Diego, CA.
This year's event is organized by Sanford Burnham Prebys in partnership with the Sanford Children's Health Research Center and CDG Care. The symposium will contnue to focus on "CDG Models and Therapy". Researchers, clinicians, patients, family members, industry experts, and inspirational advocates will bring their talents and special stories to Mission Bay in San Diego, CA.
For more information about the symposium, CLICK HERE.
For more information about the family conference, CLICK HERE.
The 6th World Conference on CDG: July 21-23, 2023
The in-person 6th World Conference on CDG took place at NOVA School of Science and Technology, FCT NOVA in Caparica, Portugal. It is 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 email@example.com.
During the weekend of June 17th and 18th, the Saint John Rapids Lacrosse Club held a fundraiser in support of Foundation Glycosylation. Over $900 was raised from the 50/50 draw and auction at the games. Thank you to the Saint John Rapids Men's and Women's teams for a great fundraiser and a great weekend of lacrosse.
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 firstname.lastname@example.org.
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 email@example.com.
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.