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Summit of Pen y Fan

McArdlers: Caoimhe, Eóghan, Bronte, Sarah
and Elisa.

Under 21s walking course
Wales 2024

LEBEN VERBESSERN

Willkommen bei IamGSD!

  

Unsere Informationen sind auf Englisch mit deutscher Option aufbereitet.

  

Auf der Schaltfläche „Sprachen“ erfahren Sie, wie Sie den Google Chrome-Browser mit Google Translate verwenden, damit Sie unsere Informationen in 100 Sprachen Ihrer Wahl lesen können.

  

Viele unserer gedruckten Publikationen sind neben Englisch auch in mehreren Sprachen erhältlich.

MUSKEL-GLYKOGEN-SPEICHERKRANKHEIT

KAMPAGNEN
Our campaigns of activity and awareness raising.

IAMGSD-Kampagnen zur Früherkennung von McArdle und anderen Muskel-GSDs, zur Übernahme internationaler Versorgungsstandards und zur Bereitstellung von Kompetenzzentren.

 

PUBLIKATIONEN

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IAMGSD bietet Informationen an, , um Menschen mit McArdle, ihre Familien, Schulen, Arbeitgeber und Ärzte zu unterstützen.

FORSCHUNG
Our research agenda for muscle GSD.

IAMGSD arbeitet daran, die Bedürfnisse von Betroffenen (McArdle und andere Muskel-GSDs) zu identifizieren und Forschungsaktivitäten anzuregen, zu fördern und zu unterstützen, um diesen Bedürfnissen gerecht zu werden.

 

KURSE

Learning management techniques on a walking course.

IAMGSD organisiert Wanderkurse, um Menschen zu helfen, ihre Kondition zu verbessern. Bisher fanden sie in den USA, Deutschland und in Großbritannien statt. Weitere Länder sollen einbezogen werden.

Main sections

NACHRICHTEN

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February 2024

THE McARDLE‘S EXPERIENCE COURSES

Book NOW! The plans for July/ August are in place. A 7-night course for Under 21s (with flexibility on age and a parent  attending with the younger people), and a 5-night course for adults. Both in the Brecon Beacons National Park. All the details on the AGSD-UK website. More info downloadable, an explanatory video and one of responses from past members. Book online.

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November 2023

WORLD MUSCLE SOCIETY POSTER PRESENTATIONS

At the World Muscle Society congress held in October in Charleston, USA, two poster presentations were made about McArdle disease. Prof Nicol Voermans presented on a paper about how patients learn to live with McArdle’s in daily life. Dr Salman Bhai presented the paper on the development of the continuum of care model. We have made the posters available online, as these are in plain language for patients.

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July 2023

CONTINUUM OF CARE PUBLISHED

A “Continuum of Care” model has been developed by a team of expert clinicians and patient advocates as a practical tool for clinicians and McArdle patients. It is published in a leading journal. It identifies areas of learning for patients to achieve an optimal state. The model outlines five pivotal steps (diagnosis; understanding; acceptance; learning and exercise) to assist clinicians to determine patient-specific learning needs and to help optimize care for these patients.

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March 2023

TRETEN SIE DEM CORDS REGISTRY BEI

IamGSD möchte, dass jeder mit einer Muskel-GSD dem CoRDS-Register beitritt, das einen speziellen Abschnitt für uns hat (diejenigen in Europa können das Euromac-Register verwenden). Bitte lesen Sie CoRDS, hören Sie den Podcast und treten Sie dann online der Registrierung bei.

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January 2024

INTERNATIONAL RARE DISEASE DAY 2024 – FEB 29

Raising awareness and generating change for the 300 million people worldwide living with a rare disease, their families and carers.


Join the community. 
Help us build awareness. 
Share your photos, videos and experiences!
Download materials

 

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October 2023

JOIN THE
GLOBAL WALKING WEEK CHALLENGE

This week-long walking event was established 10 years ago to raise awareness of the importance of engaging in regular physical activity (150 minutes/week).  It is not intended to be a competitive challenge against one another, but rather an opportunity and incentive to get moving in your locality – whether it be just a few steps, a few blocks, or a few miles or more each day. It starts on October 14.

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May 2023

GLOBAL WALKING WEEK RESCHEDULED

Our regular annual Global Walking Week has been rescheduled to autumn 2023, to give more time to promote this amongst the community, and to put in place fundraising efforts which we hope many people will support. The week is now scheduled for Saturday 14 October to Friday 20 October 2023. Please follow the link to more details and sign up to the week!

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February 2023

LEAFLET – AT PEACE WITH MCARDLE’S

We have published a new leaflet entitled “At peace with McArdle’s – ideas to help with mental well-being.” It is available now to browse online or to download a PDF. The leaflet draws on the experience of many McArdle people who perhaps have struggled with self-image, anxiety and/or depression, but have found their way to living positively with this disorder. When shared with family and friends, it will help them to understand the issues that we can face and guide them as to how they can help.

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November 2023

AGSD-UK GLISTEN MAGAZINE AUTUMN 2023

AGSD–UK has published its autumn edition of Glisten magazine. This has 14 pages on McArdle’s and other muscle GSDs generally, including reports and photos of the walking courses, an article about the Continuum of Care model and David Thompson's account of his preparation and training for the UK Three Peaks Challenge.

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September 2023

FORTHCOMING WALKING COURSES

WALES 2024
AGSD-UK has announced dates for “The McArdle’s Experience”, 2024, Brecon Beacons National Park. 
Under 21s: Monday 29 July to Monday 5 August
Adults: Monday 5 to Friday 9 August

USA 2025
Following the training of “Future Leaders” in Wales July 2023, IamGSD anticipates holding a course in the USA in 2025. Location yet to be decided. Details will be announced here in due course.

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April 2023

MCARDLE RESEARCH IN AUSTRALIA

Queensland University of Technology in Australia is conducting research into the effectiveness of current nutritional guidelines in the management of McArdle’s. They are looking for people who can exercise for 20 minutes under different nutritional states. At present, there will be two sites, one in Brisbane and one in Melbourne. Download participant information sheet, then contact principal researcher Sam Torrens:

News
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