Early Recollections of the Formation of the Organisation
by Mavis Gallienne, Wendy Abrams, Rodney Harris and Peter Cardy, December 2012
The instigation of an international network to support organisations providing a range of services and promoting research into ALS/MND came about in 1987-88, when Peter Cardy commenced as the Chief Executive Officer of the MND Association of England, Wales and Northern Ireland.
The MNDA initiated an annual Research Meeting, which would later become the International Symposium on ALS/MND (the first was called ‘Who Is Out There Researching Into MND?’).
As a result of those early meetings, delegates from ALS/MND associations around the world came to England, and discussions began about forming an international organisation whose aim would be to support associations providing care and services to people living with ALS/MND and also to promote and stimulate research. From these discussions, the Alliance was eventually born.
The Early Formation of the Alliance
Peter Cardy recollects that ALS/MND organisations felt that feeling less isolated and belonging to a network would assist them to provide better services to those diagnosed with the disease and to the health professionals caring for them, as well as to the researchers working to provide the answers into cause and cure.
Discussions took place as to the structure of the Alliance, where it should be registered, which organisations should become members and how, etc. This was not an easy task; however, it was clear that such an organisation was sorely needed.
Eithne Frost, who was the Chief Executive Officer of the Irish MND Association, became the first Chairperson of the Alliance. Peter Cardy became the first Secretary General after the International Alliance was formally incorporated in England. Under Peter’s and Eithne’s guidance, a constitution was created, and protocols on membership were drawn up.
The International Alliance of ALS/MND Associations was formally launched in November of 1992 with very similar objectives to those the Alliance has today.
The Alliance Logo and Tagline
The logo was produced by a Public Relations Company who worked for the MNDA. The brief to the company was to produce a logo that would reflect the international nature of the organisation as well as the disease ALS/MND. The logo chosen answered the brief given:
- The world (globe) is represented by the stylized meridian lines.
- ALS/MND is represented by a stylised motor neurone over the globe.
- The colour aqua was deliberately chosen, as aqua could not be found in the flag of any country—hence it was seen as a truly neutral colour for an international organisation.
The tagline for the logo was coined: United in the Worldwide Fight Against ALS/MND.
Administration of the Alliance and the Development of a Professional Structure
The Alliance was most fortunate to have the MNDA host staff within their office in Northampton, England. Ruth Carlyle was the first employee of the Alliance. Ruth produced the first Alliance Newsletter and Directory, which was a great step forward in linking organisations and the dissemination of information.
Dr. Frank Clifford Rose and Dr. Michael Swash supported and encouraged MNDA in those early days to continue to expand networks throughout the world and bring people together, thus forming mass and momentum and reducing the loneliness felt by members of associations and by researchers. Dr. David Oliver played a significant role over many years in providing palliative care aspects internationally.
While the MNDA owned and produced the International Symposium, an Alliance Member hosted the event and provided on-ground support to the MNDA. This did a great deal to provide international connections that allowed members to better provide information and services to people living with ALS/MND.
When George Levvy took over as Chief Executive Officer of the MNDA, the Alliance continued to grow, both in numbers and with the provision of support. The Alliance Meetings being held at the same time as the International Symposium gave Alliance Members the opportunity to have delegates at both events.
In those early years, the Alliance was limited by the same constraints it faces today. Individuals and organisations are busy endeavouring to provide the best possible service at their local level, while at the same time stretching themselves to have input into the work at the international level.
At the Oakland meeting in 2001, MNDA Trustee Alan Graham joined the Alliance, provided MNDA stewardship and helped develop a more mature and professional organisational infrastructure, while giving rise to many new programs and increasing the stature of the organization. Alan retired from the Board in 2010.
Over the years, the Annual Meetings have provided a formal forum to hear of work and ideas from around the globe. The Meetings also provide a wonderful opportunity for individuals to meet and share ideas in the corridors, which is most important.
Some of the early work undertaken by the Alliance includes the creation of the following programmes.
The Humanitarian and Forbes Norris Awards
The Forbes Norris Award was first presented in 1994. It was inaugurated by the International Alliance in memory of the late Dr. Forbes (Ted) Norris, a neurologist dedicated to helping people with ALS/MND. The Award is to encourage a combination of two major qualities, management of ALS/MND and research into the disease to the benefit of people living with ALS/MND worldwide.
The Humanitarian Award was inaugurated in 2000 by the International Alliance of ALS/MND Associations to recognise non-scientific contribution to the fight against ALS/MND. The Award is to recognise and encourage individuals and/or groups from a non-scientific background whose work makes, or has made a contribution of international significance for people affected by ALS/MND.
People working in the field of ALS/MND and organisations are encouraged to identify exceptional contributions in the field of ALS/MND and nominate them as potential recipients of these awards.
The Resource Library and Website
Some of the Alliance’s earliest programmes were aimed at making information accessible online. We have now updated our resources, developing a useful links page and position documents that offer our members and visitors information.
The Allied Health Professionals Forum (APF)
The APF was developed by the Alliance to serve as an adjunct to the International Symposium. This work was spearheaded by Tricia Holmes of the MNDA and Diane Heron of the MND Association South Africa and has done an enormous amount to educate health professionals working with people with ALS/MND on a practical, experience-based level. The first APF was held in 2003.
The Baseline of Services Paper
Alliance leaders developed a “Baseline of Services” document to help member organisations to promote services in their countries and to advocate for the basic rights of people with ALS/MND and their carers. We have now grown this initiative into our Patients’ Rights Policy and the International Patients’ Rights Charter.
Ask The Experts
The Ask The Experts session is held in conjunction with the Annual Alliance Meeting, APF and Symposium and provides free information and community for the local ALS/MND population in each year’s location. Ask The Experts gives local people living with ALS/MND the opportunity to hear speakers of world renown in their particular field in their own country.
The Partnership and Support Grant Programmes
The Partnership Programme and the Support Grant Programme have increased the educational opportunities for one organisation to help another, and for those from less financed organisations to travel to the international meetings. We continue to award grants every year and to encourage partnership among our members, and these programmes continue to grow in scope and reach every year.
Chairpersons of the Alliance since its inception in 1992 have been:
Eithne Frost of the Irish MNDA; Mavis Gallienne of MND Australia; Wendy Abrams of the Les Turner Foundation, USA; Diane Heron of MNDA South Africa; Rod Harris of MND Victoria, Australia; Gudjon Sigurdsson of the MND Association of Iceland; Jeffrey Deitch of the ALS Hope Foundation, USA; and, beginning in December of 2013, Carol Birks of MND Australia.
Sadly, on 5 April 2013, Dr. Jeffrey Deitch lost his battle with cancer during his term as Chairperson. Read his obituary to learn more about Jeff and his accomplishments as an educator and scientist in the field of ALS research. In honour of his many achievements, Jeff was selected as the recipient of the 2013 Humanitarian Award.