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 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.