ATTEND A CONFERENCE
For many people with a muscle GSD attending a conference will be the first time they have met anyone with the same condition as them. Links to more information will be provided when they become available.
Other associations holding relevant conferences - please let us have your dates and venues.
APRIL 17 to 19, 2020
Annual conference of the Germany GSD association, to be held in Duderstadt. Supported by board members of IamGSD.
AGSD US CONFERENCE
SEPTEMBER 11 to 20, 2020
Annual family conference of the Association for Glycogen Storage Disease, US, to be held in Cleveland, Ohio. Several IamGSD board members will be presenting, and will be hosting a muscle GSD workshop.
AGSD UK CONFERENCE
OCTOBER 10 to 11, 2020 (provisional)
Annual conference of the Association for Glycogen Storage Disease (UK), venue and final confirmation of date to follow. Supported by board members of IamGSD.
Our exhibition stand
We attend conferences and workshops around the world in order to share that information here on our website.
AGSD-UK ANNUAL CONFERENCE
Held near Manchester, we welcomed 11 McArdlites, 4 partners, and one person, diagnosed for over 20 years who had never met anyone with McArdle’s!
We started with a “Get to know you” session. Then Andrew Wakelin gave a presentation titled “Pain? What pain”. This looked at the avoidance of pain, what pain was from McArdle’s and what was not, and the management of pain if we do get hurt. Andrew Chalmers talked about his experience on the walking course, and showed a selection of his photographs. He had put off the course for several years, but having done it, he highly recommended it. We had a research update on the Sodium Valproate and Triheptanoin trials, the studies on third wind and rowing ergonometry, IamGSD’s international workshop on nutrition for McArdle’s, and the various studies on low carb and ketogenic diets.
On Sunday Andrew presented a talk by Terri Chambers of IamGSD on advocacy, which really emphasised how, with an ultra rare disease, we have to speak up for ourselves. We then looked at what the future holds, discussing projects being driven by IamGSD. These included getting the age of diagnosis below 10, the potential for gene therapy, patient registries and drafting of international standards of care. We had an update on the website and publications, with news of the planned “Improving Life with McArdle Disease” booklet from IamGSD. We had a presentation on the top tips for day-to-day management, topics which underpin everything we do. We closed with a brief Q&A session. Many felt that it was the best workshop to date.
AGSD US FAMILY CONFERENCE
Held in Houston, Texas, the Annual AGSD US conference was well-attended this year. Through our partnership with AGSD US, IamGSD led the muscle program.
Overall we gave 11 presentations that shared information on a range of topics from developing research to providing practical tips for day-to-day management, and guidance on self-advocacy.
In addition, Dr. Alfredo Santalla from Spain led a practical workshop in the gym on aerobic and strength training. This opportunity was well-received and provided conference attendees with helpful guidance.
AGSD-UK ANNUAL CONFERENCE
Held in Nottingham in October 2017, two IamGSD board members presented, one of them by video! It was judged the best conference anyone could remember by those attending. In the muscle GSD workshop, presentations were made on the Sodium Valproate trial; the new leaflets from IamGSD; a Parent’s Perspective of their child’s journey with McArdle’s; a report on the IGSD2017 conference; the year’s walking courses for McArdle’s and Tarui’s; the planned new booklet “Improving life with McArdle disease”; international developments; plans for a ketogenic diet trial; a focus on “top tips” and an update on strength training. In addition there were the plenary sessions for all delegates.
AGSD US FAMILY CONFERENCE
Held in Chicago, IL in September 2017, three IamGSD board members presented. The muscle GSD workshops were attended by around 30 individuals mostly with muscle GSD 5 and 7 and others who came to see what we were about, plus approximately a dozen medical professionals. Two days of presentations were offered, and included discussions on: Adverse Events in McArdle Disease; A day in the life; Patient-led developments of LCHF in McArdle disease; Peak-A-Week – One patient’s journey; Tauri (GSD 7) - use of low carbohydrate high fat diet;
Access and Care issues; IamGSD; What Clinicians can learn from Patients!; McArdle’s Day-to-day Tips; How a Centre of Expertise Benefits Patients; Walking Courses (UK & US); and finally an Expert Panel taking any remaining questions. In the midst of all this we took a short walk around the block to try out techniques in practice. Attendees were also provided with numerous print resources.
IGSD2017 INTERNATIONAL CONFERENCE
Held in Groningen, Netherlands in June 2017, and attended by five IamGSD board members, four of which presented in the muscle GSD program. We launched IAMGSD at this major international GSD conference. This three day event enabled us to meet with muscle GSD specialists from Australia, Denmark, France Germany, and the UK. From this, IAMGSD was invited to submit manuscripts for publication in the Journal of Inherited Metabolic Disorders - publications are pending. The next conference in this World Series will be in Brazil in 2019.