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Celebrating our longstanding McArdle’s coordinator.

This painting of the Pembrokeshire coast, by talented artist and AGSD-UK member Edd Bush, is of a path walked on the McArdle’s “Children & Parents” event this year. It was presented as a thank-you to our McArdle’s coordinator, Andrew Wakelin, at our conference in October.

Longstanding volunteer

Andrew joined AGSD-UK in 1999, was a Trustee and Chair of the board for five years from 2009 to 2014, taking the charity from its small beginnings, helping it to grow and develop. His most recent contribution has been establishing the new AGSD-UK website. Andrew serves as our volunteer McArdle’s co-ordinator, as he has for the last 15 years.

Many achievements

In that role Andrew has had many achievements. He helped to develop the nationally commissioned McArdle disease service, with its clinic in London. He has originated a wide range of McArdle publications including: the emergency card, 101 Tips book, and the Medical Overview booklet – all of which have been translated into 8 languages, and the formats copied for other GSDs. He commissioned and produced Kathryn Birch’s “McArdle Disease Handbook”. He has commissioned, and helped to make, videos for Euromac and AGSD-UK.

“The path less taken” by Edd Bush.
The Pembrokeshire coast near Manorbier.

International impact

Andrew originated the residential walking courses for people with McArdle’s, which have been attended by people from 17 countries, and have so far been adopted by three other countries. He has presented at many international conferences, met over 500 people with McArdle’s and liaises with clinicians and researchers around the world. He has been a member of the steering committee of the Euromac Registry since its launch in 2013, and in 2017 became a founding board member of the International Association for Muscle GSD (IamGSD).

To celebrate Andrew’s contribution

Edd, his wife Rachel, and daughters Harriet and Bronte (who has McArdle’s, turned 18 this year and became an Assistant Leader on the Children & Parents event), wanted to help AGSD-UK celebrate Andrew’s dedication, ongoing work and passing the milestone age of 70 this year.

Rachel said:

“I would like to thank Andrew for his unending kindness, his support and humanity to all of us in the McArdle family. I have contacted him over the years asking for his help with school, colleges, advice and when Bronte was in hospital. We would have been lost, alone and incredibly isolated without his warmth and kindness.

From our family and the global McArdle family it is not an overstatement to say we appreciate and love this kind lovely human being.”

Main photo: Edd Bush sketching the scene on the Pembrokeshire coast.