In order to raise awareness of these conditions, we promote the existence of IamGSD, its objectives and its campaigns at workshops and conferences around the world.
We attend presentations from researchers/clinicians with the intent of sharing that information through our website.
Our exhibition stand
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.