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AGSD-UK says farewell to Allan Muir.

Allan Muir hands over the reins

Following the appointment of a Chief Executive, the post of Charity Director has been made redundant and Allan Muir has recently left our employment after many years service.

It is hard to capture in words what Allan has achieved for the UK and international GSD community over his 28 years of involvement with AGSD-UK.

Joined AGSD-UK in 1991

Allan and Barbara Muir joined AGSD-UK in 1991 when their son Jamie was diagnosed with Pompe disease (GSD2) at the age of 2. While Jamie was young they lost baby Toby in infancy, he was born prematurely and also had Pompe disease. Allan was soon helping Kevin O’Donnell who was then the GSD2 coordinator, pushing forward the boundaries of diagnosis, support, research and drug development.

Trips to The Netherlands

In 2004 Jamie was entered into a juvenile trial of what was to become today’s Myozyme, Enzyme Replacement Therapy (ERT). It was a major commitment, with the family travelling to Erasmus Medical Center in The Netherlands every two weeks for Jamie to have intravenous infusions. The treatment in that trial went on to become the first and still leading treatment for Pompe.

Allan addresses the team at the end of the Costa Rica bike ride.

In 2003 Tim Arthur planned a fundraising bike ride in Vietnam for AGSD-UK. Allan signed up for the ride and developed a taste for long-distance cycling. The group of riders raised more money than had ever before been dreamt of. Learning from that experience, in 2006 Allan organised another bike ride in Costa Rica, raising a similar amount of money.

International Pompe Association

Allan is currently Vice-Chair of the International Pompe Association (IPA), an organisation he joined in 2001, eventually taking the chair in 2005. Under Allan’s leadership, the IPA was instrumental in developing relationships with the pharmaceutical industry and working to protect the interests of the International Pompe community during the roll-out of Myozyme and during a tense period of drug shortage.

GSD2 coordinator

The role of our GSD2 coordinator passed from Kevin O’Donnell to Allan in 2005, a voluntary post which he held right up until this year. Among his many achievements was securing funding for the UK’s first ever professional support worker for any GSD. Joan Fletcher was appointed as the AGSD-UK’s Family Support Officer for Pompe, working from the Willink Unit at Manchester Children’s Hospital.

Allan worked with Luke Fraser to produce the Pompe Bulletin, a journal of high quality and high production values, which had been initiated by Kevin O’Donnell.

2000 km sponsored bike ride

The Pompey to Pompeii team meet the Mayor of Pompeii after finishing their 2000 km ride. Allan centre back.

Although he and Barbara have regularly raised very useful sums in village fundraising events, Allan has continued to be a driving force behind the larger national fund-raising events, especially bike rides which he always joins. In 2006 he worked with Luca Venditto to organise “Pompey to Pompeii for Pompe” a massive commitment of a sponsored 2,000 km ride from Portsmouth to Pompeii in Italy. He also organised an annual 100 mile “Sportive” in the South Downs for 3 years, the GSD Giant. He and Barbara could be seen placing route markers at 3 o’clock in the morning!

Allan became a trustee of AGSD-UK in 2005, as at that time all coordinators were also trustees. For several years Allan was keen to see the charity become better organised and more professional in its approach.  He could see the time coming when financial support from pharmaceutical companies could increase substantially, and he wanted us to be organised and ready.

Push for professionalism

Andrew Wakelin and Allan worked together to transform the unincorporated charity, where unlimited liability rested on every member, into an incorporated body with limited liability. This was an important protection for members, but also removed the impracticality of entering into contracts such as an office lease and employing staff. At the same time Allan was conducting discussions with Genzyme (now Sanofi-Genzyme) over significant financial support.

With the security of the money raised on the major bike ride events, and encouraged by Allan’s drive for a more business-like approach, the trustees decided to invest in a major step change for the charity. This involved the appointment of a Development Director to move the charity up to a more professional level and the provision of more services to members. The board prepared the job description and contract and then advertised the position. Although having a successful career in aerospace engineering, Allan decided, with the Barbara’s support, to apply for the role. The board selected four people for the shortlist and after all were interviewed and references taken up, Allan was appointed to the position. In compliance with Charity Commission guidelines, Allan at that time stood down as a trustee.

Paid and voluntary roles

As Development Director Allan was employed for 4 days per week, retaining his volunteer role as GSD2 coordinator – effectively dedicating 1 day per week to that. In practice Allan was frequently found to be answering emails, supporting patients online, travelling to conferences, etc, seven days a week and at all times of the day and night.

Allan found a suitable office in a serviced building, which we were able to secure on a flexible basis. Working with the Chairman he recruited a part-time administrator to handle the office procedures, membership database and financial records, functions which had previously been handled on a very ad-hoc and disjointed basis across a number of trustees.

With Dr Barry Byrne and his wife on the London to Paris bike ride.

As part of the development of the charity, Allan made a push for greater fundraising. He found Steve Saunders who was appointed as our first Fundraising Manager on a very flexible, part-time basis.

One of Allan’s major developments was securing funding from Sanofi-Genzyme for a Specialist Care Adviser for Pompe, directly employed and managed by AGSD-UK. The success of this model of support for patients made an increase in the number of such advisers, to support the other GSDs, one of Allan’s major objectives.

Development of Glisten and the conference

In wanting to develop our photocopied newsletter into a more professionally edited and produced, colour printed magazine “Glisten”, Allan became the de-facto editor and managed to produce a substantial edition every year.

Another of Allan’s responsibilities was the Annual conference which he organised. These events were the highlight of the year for the UK GSD community and have always received very positive feedback.

When the McArdle’s team committed to the awareness- and fund-raising “Walk over Wales” in 2010, Allan and his family were fully supportive. They several times visited the team en-route, made some short videos for our YouTube channel, and after 32 days were there at the finish in Cardiff Bay to welcome the team and celebrate the success of their 210 mile epic.

Presenting at the 2017 conference (with broken collar bone!).

Our first professional video

In 2012 Allan and Jamie, then a film production student, made AGSD-UK’s first professional quality video, “Hope in the Genes”, about the impact of infant onset Pompe disease. This set the trend and several other professional quality videos have since been produced.

Funding cuts led to the trustees withdrawing the admin support in the office. Allan struggled on with an overload of work and tasks which were not his core strengths, but slowly over years some finance and admin support was reintroduced.

In 2016 the board finally made Allan’s position permanent, though still part-time, as he became Charity Director in place of Development Director.

Hepatic guidelines

More recently, Allan managed to bring together teams of consultants, dietician’s and Clinical Nurse Specialists from specialist centres in England, Scotland and Wales, to develop clinical guidelines for all hepatic GSDs. The meetings were greeted with great enthusiasm and we hope that guidelines will begin to emerge in the next few years.

International representation

Allan has regularly represented AGSD-UK (and often the wider international GSD community) at overseas national and international GSD conferences, and medical, scientific, research and rare disease meetings. He has made AGSD-UK influential amongst international contacts, pharmaceutical companies, NHS commissioners, and clinicians.

The handover

AGSD-UK’s appointment of a Chief Executive in 2019 as a full-time post, with no coordinator responsibilities, has meant that the role of the Charity Director is now subsumed into the wider role of Chief Executive. Allan’s position has thus become redundant and after a short handover period he left our employment in mid September.

Relieved of the finance, management and governance issues of AGSD-UK, Allan will now be able to concentrate his efforts primarily on his first interest – Pompe disease. He will no doubt still have a keen interest in all the GSDs and will catch up with old friends at future conferences.

We especially thank Allan, but also Barbara and Jamie, for their dedicated service, wish them all the best for the future and hope to see them soon.

Main photo: Allan on the Pompe to Pompeii bike ride.

A personal note from Barbara Muir

When we are faced with rare disease we try to just get on, especially with children, doing all one can to keep them alive and hope they live on to lead fulfilling, happy lives. All this, despite the worry of possible life-limiting health issues.

Allan has worked so very hard for AGSD-UK. Plus… hours of unpaid overtime, hours of fundraising, evenings dedicated to AGSD-UK, holidays taken searching for WiFi to keep up with the bombardment of emails even on annual leave.

The AGSD-UK became family, especially the Pompe crew. Workshops at conferences meant we could all gather and get to know each other better. Allan did so much and I’m proud of what he did to develop the charity. Our founders Ann and Sue must also feel proud that the charity is looking so professional and doing so much good.