PREVIOUS NEWS STORIES
Here we archive news stories which have appeared in the news feature on our home page.
Rare Disease Day
Learning on a walking course in California
CLINICAL PRACTICE GUIDELINES PUBLISHED
A huge landmark in the progress of the understanding and treatment of GSD5 & 7 has been passed. The Clinical Practice Guidelines for these conditions, prepared by an international team of 18 clinicians, researchers and patient advocates led by IamGSD, has been published in Neuromuscular Disorders, the official journal of the World Muscle Society December issue. The paper and Supplementary Material are available free under Open Access.
CLINICAL PRACTICE GUIDELINES ACCEPTED
An international team of expert clinicians and researchers, led by IamGSD President Dr. Stacey Reason, has agreed Clinical Practice Guidelines for GSD V (McArdle disease) and GSD VII (Tarui disease). These diagnostic and management recommendations have been accepted by Neuromuscular Disorders, the journal of the World Muscle Society.
AGSD US CONFERENCE
Held online due to Covid, the dates were from September 10, registrations closed September 15. For those who registered all presentations remain available until October 31. For everyone else our five presentations remain available on our YouTube channel.
INFO ON COVID-19 CORONAVIRUS
Many of us are feeling anxious as we navigate the uncertainty of COVID-19 (coronavirus). We share some information to help everyone with a muscle GSD through these difficult times.
GLOBAL WALKING WEEK 2020
The 7th annual Global Walking Week will be held Friday 16 to Saturday 22 May 2020 inclusive, encouraging us all to get moving, raise awareness and maybe even raise some funds.
IGSD2019 BRAZIL ANNOUNCED
The next major international GSD conference has been announced for Brazil in 2019. Watch out for more info.
WALKING COURSE DATES
The Walking Course in Wales this year will be held over 21 to 28 August and the Children & Parents event will be 17 to 20 August. The location will be the Brecon Beacons National Park in South Wales.
TRAINING SUPPORT PAGE LAUNCHED
Our new page for Training Support is now made public in its final draft form. The page has the new “At the gym” leaflet and other resources intended to support physical therapists and personal trainers who are assisting people with McArdle’s. Feedback is requested by January 31 in order to assist us to complete the final versions of these resources.
GSD3 INFOGRAPHIC LAUNCHED
Recently IamGSD shared an online global survey for GSD3 on our website. The survey has been finalized and much of the results are captured in an infographic, publicly available now. Go to our GSD3a page for more details and a link to download a PDF of the survey report.
Please refer to the vaccine distribution plan for your country/local region. To the best of our knowledge, there is no reason why COVID-19 vaccines should cause any particular issue to someone with a muscle GSD. Please consult your primary physician for individual guidance.
LAUNCHES FOR RARE DISEASE DAY
We have three amazing launches for Rare Disease Day – a brand new patient registry for North America, a “Get Moving” campaign and an offer of T-shirts, sweatshirts and goodies (closes 23 March).
NEW RESOURCE ON GENE THERAPY
The American Society of Gene and Cell Therapy has launched a video of their webinar: “Gene Therapy: Yesterday, Today, and Tomorrow”. It is an interesting introduction to this important subject.
NEW COMMENTARY ON CENTRES OF EXCELLENCE
A Centre of Expertise represents the most expansive platform to provide patients with McArdle disease current best practices that encompass thorough assessments, accurate diagnostic methods, relevant information and guidance, multidisciplinary support and an ongoing interface between primary and specialist care.
“Centre of Expertise: Comprehensive Care for Patients with McArdle Disease”,
Journal Rare Disorders: Diagnosis & Therapy 2018, Vol.4 No.1:4.
NEW LEAFLET ANNOUNCED
“AT THE GYM”
We are working on this new leaflet for physical therapists and personal trainers who are asked to help people with McArdle’s get exercising. The leaflet avoids being daunting for a trainer who does not know our condition. It is backed by a webpage “Training support” which provides extra resources. It is in pilot, with launch expected January. DRAFT AVAILABLE NOW!
JOIN THE CORDS REGISTRY
IamGSD would like everyone with a muscle GSD to join the CoRDS Registry which has a special section for us (those in Europe can use the Euromac Registry). Please read about CoRDS, listen to the podcast and then join the registry on-line.
PODCAST ABOUT CoRDS REGISTRY
CoRDS launch a 28 minute podcast with Stacey and Andrew, talking about muscle GSD and the CoRDS Registry. Listen, and then join the registry, to help everyone but especially those yet to be diagnosed.
WALKING COURSE DATES FOR 2020
Walking courses are planned for Wales (AGSD-UK) – 6-13 August, Germany (SHG) – 18-22 September, and provisionally USA (IamGSD) – adjacent to the AGSD US conference 11-12 September.
WALKING WEEK 2019
The 6th annual walking week will be held Monday 20 to Sunday 26 May 2019, encouraging us all to get moving, raise awareness and maybe even raise some funds.
RESEARCH RESULTS AWAITED
During 2018 we are expecting the results of three trials to be published - the ketogenic trial in Germany, the Triheptanoin trial in Denmark and France, and the Sodium Valproate trial in Denmark and the UK.