The 3rd World Conference on CDG will be held in Leuven, Belgium.
The "World Conference on Congenital Disorders of Glycosylation for Families and Professionals” is a biennial event designed in collaboration with leading experts in the field of CDG. Families and professionals will work together to exchange knowledge, experiences, needs and perspectives.
This World Conference on CDG will provide a patient-tailored program which will highlight important information in the areas of clinical and bench research, as we move to improve the care and the quality of life of people living with CDG and related metabolic rare diseases.
The Scientific-Medical and Family organizing committee is sure that this unique event will be unforgettable and look forward to welcoming you to this 3rd World CDG Conference.
CDG families together with professionals can make the difference!
Laying the groundwork for future stages of research and development based on family’s needs is the most rewarding aspect of this World Conference–boosting translational research will be a dream come true!
We are looking forward to seeing you in Leuven! For more information click here.
In recognition of Rare Disease Day 2016, Sanford Burnham Medical Research Institute, CDG CARE and NGLY1.org will be hosting two conferences in the SanDiego area. To kick off this groundbreaking educational opportunity, Sanford-Burnham will host a collaborative Scientific Conference in La Jolla, California from February 26-27, 2016. CDG CARE will partner with NGLY1.org to coordinate the CDG Family Conference immediately following in Del Mar, California from February 27-29, 2016. Do not miss this opportunity to meet the experts and fellow CDG families!
The 2016 CDG Family Conference took place February 27-29, 2016. This event was organized by CDG CARE in partnership with NGLY1.org and the Sanford Burnham Prebys (SBP) Medical Discovery Institute. The CDG Family Conference was held following the SBP Seventh Annual Rare Disease Day Symposium: Human Glycosylation Disorders held February 26-27. Both events were in the San Diego, California area.
The feedback received through the post-conference survey was resoundingly positive. The direct impact of education and awareness among CDG and NGLY1 families was impressively diverse among the 70 adults, 26 children and 27 different families who attended the event from across the United States, Canada and Israel!
A final Post-Conference Video Program will soon be complete and will be shared globally on the CDG CARE YouTube channel.
The 2nd World Conference on CDG was held in Lyon, France. On August 28th an informal gathering for families and friends was held and subsequently, on August 29th and 30th the scientific conference took place. The goal of the conference was to raise awareness about CDG around the world and to foster an exceptionally collaborative model involving patients, family members, researchers, and physicians.
This conference was a satellite symposium that preceded the Annual Symposium of the Society for the Study of Inborn Errors of Metabolism which was held on September 1-4, 2015. To see highlights from the Second World Conference on Congenital Disorders of Glycosylation held in Lyon, France click here.
The 1st World Conference on Congenital Disorders of Glycosylation for families and professionals was held in Barcelona, Spain in September 2013. This conference highlighted progress in clinical and research areas of CDG and aimed to find better care and improved quality of life for those living with the disorder. A summary of this event is located below and a PDF version is available here.
The FoG Cup was established in 2012 as an opportunity for old friends to get together and play ball hockey for a good cause. Funds raised help to advance the research of Congenital Disorders of Glycosylation (CDG). Money collected is used to assist with ongoing projects and research. Thank you to Terence Sullivan, our devoted annual organizer, and to friends and supporters who have assisted with or participated in the FoG Cup.
Thank you to Dennis Kim for providing us with some awesome pictures from this years tournament!
Thank you all who came out to participate in this years FoG Cup! We had about 50 kids battle it out for the Kids FoG cup and about 25 guys compete for the 2016 Millidgeville FoG Cup. Through large numbers and your great generosity, we were able to raise over 7500$ making this our most successful tournament yet!
The 2015 FoG Cup Challenge was once again a huge success. We were able to raise over $2500! Thank you to all who participated and congratulations to the Adult FoG Cup Champs, led by ex-NHLer Randy Jones, and the Youth FoG Cup Champs the "Terminators".
2015 Adult FoG Cup Champions: Adrian Tompkins, Randy Jones, Timmy McAdam, Cody Millet, Duncan Webster, John Hazen, Andrew Lund
2015 Youth FoG Cup Champions: Noah Webster, River Lanz, Jacob MacDonald, Daniel MacDonald, Riley Rooney, Matt McDade, Kyle Fenwick, Matthew Weaver, Colton Kingston, Geoff (coach)
The 3rd annual FoG Cup saw the addition of a Youth division. Congratulations to the Millidgevile Crew led by the Tompkins boys and to the Youth champions led by all star goaltender Liam Sullivan between the pipes. Thanks to all for a great day.
2014 Adult FoG Cup Champions: Scott Mitchell, Martin MacKinnon, Chris Stevens, Trevor Tompkins, Adrian Tompkins, Paul Higgins, Robbie George, Chad Sooly, Mike Wilson
2014 Youth FoG Cup Champions: Brad Gallant, Rohan Laverne, Grant Richards, Joey McPhail, Alex Cyr-Ouelette, Adam Boyd, Liam Sullivan, Greg MacIntyre (coach)
The second annual FoG Cup ball hockey tournament was a tremendous success with forty players and six teams. A good time was had by all.
2013 FoG Cup Champions: Luke Johnson, Jamie Patterson, Jamie Margaris, Robbie George, Shane Nesbitt, Brian Kerr, John Hazen
The inaugural FoG Cup was hosted in the spring of 2012 at Millidegville North High School. A large turnout included 60 of Saint John's finest athletes who were eager to compete in the eight team FoG Cup tournament. At the end of a fun afternoon, the first ever FoG Cup champions were crowned.
2012 FoG Cup Champions: Justin O'Toole, Greg MacIntyre, Jamie Bennett, Terence Sullivan, Jamie Margaris, Adrian Tompkins
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. To read more about past Port City Dance Academy fundraising events please visit the Port City Dance Academy website.
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. From left to right: Mr. Emmerson, the late Dr. Russell Webster (a founding trustee of the FoG), and Dr. Duncan Webster.