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. These are also opportunities to meet with researchers and clinicians and hear about the latest developments.
We give here details of the countries where we know GSD national associations host conferences, typically annually.
Other associations holding relevant conferences - please let us have your dates and venues.
AGSD US CONFERENCE
SEPT./OCT. EACH YEAR
The US conference has been held virtually for 3 years due to the Covid-19 pandemic. For 2022 the US conference was combined with the international conference IGSD2022.
The conference was FREE, but you were asked to make a small donation to the AGSD US to help support people with GSDs.
USUALLY IN APRIL
Annual conference of the Germany GSD association, held in Duderstadt. Supported by board members of IamGSD.
Due to the pandemic recent conferences have been online only. See the AGSD-UK Youtube channel for 2020/21 and 2021/22 seasons of presentations, videos and online meetings.
For the coming conference they return to a physical conference to be held in Loughborough over 20/21 May 2023. Further details of “The Main Event” will appear on their website.
Our exhibition stand
IGSD INTERNATIONAL SERIES
This is a series of international conferences hosted by national GSD associations in different countries. It is attended by leading researchers, clinicians and people affected by GSDs from around the world. Usually held every three years, in recent times it has been hosted in the Netherlands, Brazil, and an online event in the US. The next conference in this world series is expected in 2025.
IamGSD representatives attend conferences and workshops around the world to contribute to those events and to share their information back here on our website. Please let us know if you plan to attend a conference and can contribute a report.
COVID-19 PANDEMIC INTERRUPTION
Due to the Covid-19 pandemic most conferences were held online only for two years. They are now starting to return to physical meetings and we plan to restart our regular reporting.
AGSD-UK WINTER SEASON 2022
For the second year running the AGSD-UK conference was not physical, but held as an online conference with lots of videos and presentations. There were 12 presentations for McArdle’s and the other muscle GSDs covered by IamGSD, this time in a dedicated McArdle’s playlist. There was a mixture of brand-new content (about 50%), updated versions of previous videos, and some links to material previously published elsewhere, such as on the IamGSD channel.These remain available on the AGSD-UK, YouTube channel, “GSD Screen”.
Although it is a pity not to get together, the online conferences have actually had a much greater reach than the physical conferences. The muscle GSD videos in 2022 have had about 3,500 views by people from all around the world.
AGSD-UK WINTER SEASON 2020/21
With the 2020 conference being cancelled due to the Covid pandemic, AGSD-UK instead had an online conference with lots of videos and presentations. There were 13 presentations for McArdle’s and the other muscle GSDs covered by IamGSD, still available on the AGSD-UK, YouTube channel, “GSD Screen”.
This year we had lots of patient stories from people with muscle GSDs.
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.
IGSD SERIES OF INTERNATIONAL CONFERENCES
A conference in this series was held in Groningen, Netherlands in June 2017, and was 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. The next conference in the series was in Brazil in 2019. Next, IamGSD contributed a number of recorded presentations and videos for an online conference hosted by the US in 2022.