HARRISON FORD IN GSD FILM
Extraordinary Measures starring Harrison Ford, based on the book "The Cure" it tells the story of John Crowley and his part in funding the development of an enzyme-replacement therapy for people with Pompe Disease. Two of John's children suffer from Pompe (GSD Type II). UK release 26th February.

 

MCARDLE HANDBOOK PROJECT
Thanks to the Vodafone Foundation Kathryn Wright is preparing a Handbook for people with McArdle's. More details here.

 


 

HARRISON FORD IN GSD FILM
Extraordinary Measures starring Harrison Ford, based on the book "The Cure" it tells the story of John Crowley and his part in funding the development of an enzyme-replacement therapy for people with Pompe Disease. Two of John's children suffer from Pompe (GSD Type II). UK release 26th February.

 

MCARDLE HANDBOOK PROJECT
Thanks to the Vodafone Foundation Kathryn Wright is preparing a Handbook for people with McArdle's. More details here.

 

Support for McArdle patients

 


Contacts

Andrew Wakelin is the Type V McArdle representative to AGSD (UK). This voluntary role is to: answer questions from McArdle patients; represent the interests of McArdle patients to the AGSD Executive Committee; liaise with and assist the McArdle Clinic at Oswestry and other organisations involved with McArdle disease; attend McArdle Clinic days to meet patients; organise the McArdle workshop at the annual conference; and approve any use of McArdle funds held by AGSD.

People who are newly diagnosed with McArdle disease usually have a great number of questions and Andrew tries to answer all of these. Sometimes it is appropriate to put patients in touch with each other because either they live in the same area or have similar circumstances. This is only ever done with the advance approval of both parties.

You can contact Andrew by email at type5@agsd.org.uk.


The McArdle Clinic

Many patients are diagnosed at hospitals around the UK where, due to the rarity of the condition, the consultant concerned has few or no other McArdle patients. The support on offer is therefore often very limited. However, patients may ask their GP to refer them to the UK's only McArdle Clinic. At the clinic they will receive a broad range of medical support, be kept up to date with the latest information and be able to meet other patients. For full details please see the page 'The McArdle Clinic'.


Workshops at annual conference

At the AGSD annual conference, usually held on the first or second Saturday of October, we hold a McArdle workshop. This is an excellent opportunity for patients to meet each other; many stay over on the Friday night to get together socially on Friday evening.

The workshop usually starts with a presentation on a subject relating to research or therapy and is given by a medical professional. Previous talks have included: gene therapy research in Australia using a flock of sheep which have McArdle disease; Dr Alfred Slonim, a leading McArdle consultant from New York; and exercise physiologists from the British Olympic Team. We also have an update on the McArdle Clinic and research at the Centre for Inherited Neuromuscular Disease at Oswestry from Dr Ros Quinlivan or one of her team. Finally we have a patient-focussed session when we talk about issues we have in common, share experiences and offer each other helpful tips.

Details of the next conference can be found under Conferences. Reports from workshops at previous annual conferences can be found under Workshop Reports.


GSD Net on-line support group

GSD Net is a FREE email mailing list system which enables communication between patients with any type of glycogen storage disease. There are about 200 to 300 McArdle patients registered from all around the world. It is a great way to ask a question and find other people who have already experienced the same issue. To make a 'post' you simply send an email to the server. You can restrict the emails you receive to just those concerning McArdle disease - Type 5. Instructions for joining are here.


Muscular Dystrophy Campaign

McArdle disease is a neuromuscular condition which comes within the remit of the Muscular Dystrophy Campaign (MDC). They too have information on McArdle disease on their web site. Although theMDC is less active in McArdle disease than the AGSD, they do have an information and support service accessible by phone, post and email. And they have a team of Care Advisors who can give specialist advice and support and help deal with organisations such as Social Services and the NHS.

Muscular Dystrophy Campaign
7-11 Prescott Place
London SW4 6BS
Tel: 020 7720 8055
www.muscular-dystrophy.org

Support for McArdle patients

 


Contacts

Andrew Wakelin is the Type V McArdle representative to AGSD (UK). This voluntary role is to: answer questions from McArdle patients; represent the interests of McArdle patients to the AGSD Executive Committee; liaise with and assist the McArdle Clinic at Oswestry and other organisations involved with McArdle disease; attend McArdle Clinic days to meet patients; organise the McArdle workshop at the annual conference; and approve any use of McArdle funds held by AGSD.

People who are newly diagnosed with McArdle disease usually have a great number of questions and Andrew tries to answer all of these. Sometimes it is appropriate to put patients in touch with each other because either they live in the same area or have similar circumstances. This is only ever done with the advance approval of both parties.

You can contact Andrew by email at type5@agsd.org.uk.


The McArdle Clinic

Many patients are diagnosed at hospitals around the UK where, due to the rarity of the condition, the consultant concerned has few or no other McArdle patients. The support on offer is therefore often very limited. However, patients may ask their GP to refer them to the UK's only McArdle Clinic. At the clinic they will receive a broad range of medical support, be kept up to date with the latest information and be able to meet other patients. For full details please see the page 'The McArdle Clinic'.


Workshops at annual conference

At the AGSD annual conference, usually held on the first or second Saturday of October, we hold a McArdle workshop. This is an excellent opportunity for patients to meet each other; many stay over on the Friday night to get together socially on Friday evening.

The workshop usually starts with a presentation on a subject relating to research or therapy and is given by a medical professional. Previous talks have included: gene therapy research in Australia using a flock of sheep which have McArdle disease; Dr Alfred Slonim, a leading McArdle consultant from New York; and exercise physiologists from the British Olympic Team. We also have an update on the McArdle Clinic and research at the Centre for Inherited Neuromuscular Disease at Oswestry from Dr Ros Quinlivan or one of her team. Finally we have a patient-focussed session when we talk about issues we have in common, share experiences and offer each other helpful tips.

Details of the next conference can be found under Conferences. Reports from workshops at previous annual conferences can be found under Workshop Reports.


GSD Net on-line support group

GSD Net is a FREE email mailing list system which enables communication between patients with any type of glycogen storage disease. There are about 200 to 300 McArdle patients registered from all around the world. It is a great way to ask a question and find other people who have already experienced the same issue. To make a 'post' you simply send an email to the server. You can restrict the emails you receive to just those concerning McArdle disease - Type 5. Instructions for joining are here.


Muscular Dystrophy Campaign

McArdle disease is a neuromuscular condition which comes within the remit of the Muscular Dystrophy Campaign (MDC). They too have information on McArdle disease on their web site. Although theMDC is less active in McArdle disease than the AGSD, they do have an information and support service accessible by phone, post and email. And they have a team of Care Advisors who can give specialist advice and support and help deal with organisations such as Social Services and the NHS.

Muscular Dystrophy Campaign
7-11 Prescott Place
London SW4 6BS
Tel: 020 7720 8055
www.muscular-dystrophy.org