Muscular Dystrophy APPG

First Registered: 30/07/2015 • Last updated on: 06/10/2021

Official Page

Raises awareness of all types of muscular dystrophy and neuromuscular conditions and promotes links between parliament, individuals and families affected by these muscle-wasting conditions, charities, scientists, health professionals and decision-makers.

Note: All-Party Parliamentary Groups (APPGs) are informal, cross-party groups formed by MPs and Members of the House of Lords who share a common interest in a particular policy area, region or country. APPGs have no official status within Parliament.


This content was generated for your convenience by Parallel Parliament and does not form part of the official record.
Recent Documents related to Muscular Dystrophy

1. Muscular dystrophy and driving
18/02/2019 - Driver and Vehicle Licensing Agency
- View source

Found: Muscular dystrophy and driving - GOV.UK document

2. New partnership with Muscular Dystrophy UK to improve journeys for disabled road users
29/11/2018 - Department for Transport
- View source

Found: New partnership with Muscular Dystrophy UK to improve journeys for disabled road

3. Muscular Dystrophy UK - written evidence
15/11/2017 - Inquiry: PIP and ESA Assessments - Work and Pensions Committee
- View source

Found: Written evidence - Muscular Dystrophy UK Written evidence from Muscular Dystrophy UK (PEA0285)  About

4. Early access to medicines scheme (EAMS) scientific opinion: Raxone to treat the decline of respiratory function in patients with Duchenne Muscular Dystrophy
24/06/2019 - Medicines and Healthcare products Regulatory Agency
- View source

Found: respiratory function in patients with Duchenne Muscular Dystrophy - GOV.UK

5. Issue Blue Badges, for degenerative disease, with open end date
01/07/2021 - Petitions

Found: Sclerosis, Parkinson’s, Motor Neurone Disease, Muscular Dystrophy to name just a few, to have no end date.

Latest Documents
Recent Speeches related to Muscular Dystrophy

1. Disabled Facilities Grants (Review)
14/07/2020 - Commons Chamber

1: in the all-party parliamentary group for muscular dystrophy, which looks at the difficulties faced by - Speech Link

2. Pompe Disease
31/10/2017 - Commons Chamber

1: suffer from the disease receive support from Muscular Dystrophy UK—I put on the record my thanks to it for - Speech Link
2: disease. Like others, I have been contacted by Muscular Dystrophy UK, and rare diseases come up here often - Speech Link
3: is absolutely right to praise the work of Muscular Dystrophy UK. When I was a Back-Bench MP, I was a member - Speech Link

3. Rare Diseases Strategy
28/03/2017 - Westminster Hall

1: consideration. There are some 60 different types of muscular dystrophy, and 1,000 children and adults for every - Speech Link
2: range of different things—including that of Muscular Dystrophy UK. I hope hon. Members find that report - Speech Link
3: implementation. Muscular Dystrophy UK has said that it would have a major impact on drugs for muscular dystrophy - Speech Link

4. Spinal Muscular Atrophy
25/07/2019 - Commons Chamber

1: thought I had better stick to a script.Spinal muscular atrophy is a genetically inherited neuromuscular - Speech Link
2: families of SMA patients, Muscular Dystrophy UK, TreatSMA, Spinal Muscular Atrophy UK and many clinicians - Speech Link
3: outlined very movingly the symptoms of spinal muscular atrophy, which has been raised before in this - Speech Link

5. NICE Appraisals: Rare Diseases Treatments
21/03/2019 - Commons Chamber

1: needs of people with rare diseases such as muscular dystrophy, phenylketonuria and cystic fibrosis; and - Speech Link
2: the same problems. The all-party groups for muscular dystrophy and for cystic fibrosis are two that come - Speech Link
3: suffering from cystic fibrosis, but those with spinal muscular atrophy, Batten disease and PKU, to name but a - Speech Link

Latest Speeches
Recent Questions related to Muscular Dystrophy
1. Muscular Dystrophy
asked by: John Baron
21/06/2021
... treatment and outcomes for Duchenne muscular dystrophy.

2. Muscular Dystrophy
asked by: Jim Shannon
23/05/2018
... when he last met charities representing the interests of people living with duchenne muscular dystrophy.

3. Muscular Dystrophy
asked by: Cheryl Gillan
03/05/2018
... what assessment he has made of the suitability of the Single Technology Appraisal process for new treatments for patients with Duchenne Muscular Dystrophy.

4. Muscular Dystrophy
asked by: Baroness Masham of Ilton
05/02/2018
...To ask Her Majesty's Government what assessment they have made of services to monitor and support patients with Duchenne Muscular Dystrophy who are experiencing respiratory decline.

5. Muscular Dystrophy
asked by: Julian Lewis
02/11/2017
... what the timetable is for the National Institute for Health and Care Excellence evaluation of the Duchenne muscular dystrophy treatment Exondys 51.

Latest Questions
APPG Supplied Content

APPGs can register with Parallel Parliament and submit files and articles to be placed here.

Parallel Parliament offers the facility for APPGs to submit written content and files, which are made available through this page.

Submitters can draft and edit publications, and either release them on demand, or schedule release for a future date.

Both text content and attached files submitted through this facility is indexed by our website, and made available through both the search function and relevant e-mail alerts. Any of our users registered for an alert which matches your content, will receive a link making them aware of its publication.

If you wish to register as an authorised representative of the Muscular Dystrophy APPG and use this facility, click below

5 Current APPG Officers
Baroness Thomas of Winchester Portrait
Baroness Thomas of Winchester
Vice Chair
Liberal Democrat - Life peer
Joined: 30th July 2015
1 APPG Membership
Learning Disability
Contact Details

Registered Contact:

Mary Glindon MP, House of Commons, London, SW1A 0AA. Tel: 020 7219 3000.

Email: mary.glindon.mp@parliament.uk

Public Enquiry Point:

Michaela Regan, Muscular Dystrophy UK, 61A Great Suffolk Street, London SE1 0BU

Email: m.regan@musculardystrophyuk.org

Secretariat:

Muscular Dystrophy UK acts as the group's secretariat. http://www.musculardystrophyuk.org/

Benefits in Kind
Date
12 Feb 2021
Source
Muscular Dystrophy UK
Description
Secretariat   From : 12/02/2021 To : 11/02/2022
Value
£3,001
Date
12 Feb 2020
Source
Muscular Dystrophy UK
Description
Secretariat   From : 12/02/2020 To : 11/02/2021
Value
£3,001
Date
18 Jul 2019
Source
Muscular Dystrophy UK
Description
Secretariat   From : 18/07/2019 To : 17/07/2020
Value
£3,001
Date
18 Jul 2018
Source
Muscular Dystrophy UK
Description
Secretariat   From : 18/07/2018 To : 17/07/2019
Value
£3,001
Date
1 Jan 2018
Source
Muscular Dystrophy UK
Description
Secretariat   From : 01/01/2018 To : 31/12/2018
Value
£3,001
Date
1 Jan 2017
Source
Muscular Dystrophy UK
Description
Secretariat   From : 01/01/2017 To : 31/12/2017
Value
£3,001
Date
1 Jan 2016
Source
Muscular Dystrophy UK
Description
Secretariat   From : 01/01/2016 To : 31/12/2016
Value
£3,001
Date
1 Jan 2015
Source
Muscular Dystrophy UK
Description
Secretariat   From : 01/01/2015 To : 31/12/2015
Value
£3,001

No direct financial benefits are on record for the Muscular Dystrophy APPG

Former APPG Officers
Cheryl Gillan Portrait
Cheryl Gillan
Vice Chair
Conservative - Former Member for Chesham and Amersham
Joined: 30th July 2015
Departed: 10th March 2021
No other APPG Memberships
Cheryl Gillan Portrait
Cheryl Gillan
Vice Chair
Conservative - Former Member for Chesham and Amersham
Joined: 30th July 2015
Departed: 20th December 2017
No other APPG Memberships
Paul Maynard Portrait
Paul Maynard
Vice Chair
Conservative - Blackpool North and Cleveleys
Joined: 30th July 2015
Departed: 2nd May 2017
Paul Monaghan Portrait
Paul Monaghan
Vice Chair
Scottish National Party - Former Member for Caithness, Sutherland and Easter Ross
Joined: 30th July 2015
Departed: 2nd May 2017
No other APPG Memberships
David Anderson Portrait
David Anderson
Chair & Registered Contact
Labour - Former Member for Blaydon
Joined: 30th July 2015
Departed: 12th October 2016
No other APPG Memberships
Lord Walton of Detchant Portrait
Lord Walton of Detchant
Secretary
- Former Member for
Joined: 30th July 2015
Departed: 16th March 2016
No other APPG Memberships