Co-ordinating the International Alliance of ALS/MND Associations

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Rachel Patterson is the Co-ordinator for the International Alliance of ALS/MND Associations. Tomorrow is Global Awareness day and they are promoting ‘One Global Team… One goal for a world free from ALS/MND’. Here she writes about the role of the Alliance in creating a world free from MND.

My name is Rachel Patterson, and I am the Coordinator of the International Alliance of ALS/MND Associations.

As the only employee of our small not-for-profit organisation, I do a bit of everything, from administration to PR to marketing to communications to accounting. I am deeply committed to my position in part because I have personal experience with this disease; my mother is a neurologist who has dedicated her career to the care of people with MND, so I grew up understanding its devastating impact on individuals, families and communities.

About the Alliance

The Alliance is a membership organisation for MND patient care, advocacy and support associations from all over the world. Today, we have more than 40 member associations from more than 30 countries, and we continue to grow! The MND Association is one of our most active and integral members. In fact, in 1992, when the Alliance was established, the MND Association was one of our founding members. (Learn more about our history here.)

The purpose of the Alliance is to provide a forum for the exchange of information and resources among our members. Basically, the idea is this: If associations from around the world have the opportunity to network, form partnerships and communicate, we will improve quality of life for people with MND everywhere. Working together, sharing our knowledge and experiences, we have the opportunity to achieve more than we ever could alone. The Alliance provides an international community, so that no association is working in isolation, without resources and support.

We see the fight against MND as a global struggle. Our mission is to work toward a world free from ALS/MND. We hope to accomplish our mission through our objectives and programmes.

The Alliance meeting and the Allied Professionals Forum

Importantly, we hold two annual meetings, the Annual Alliance Meeting and the Allied Professionals Forum, in collaboration with the MND Association and the International Symposium on ALS/MND. Our meetings coincide with the Symposium each year.

During the Alliance Meeting, we invite representatives from all of our member associations to share knowledge and ideas about fundraising, patient programmes, care initiatives and research. These representatives ask one another questions, provide one another with support and use networking to develop international partnerships. We will mark the 22nd annual Alliance Meeting in December of 2014.

The purpose of our second meeting, the Allied Professionals Forum (APF), is to provide practical education and training to health professionals who care for people with MND in all parts of the world. During the Forum, hundreds of health professionals from every field—from social work to physiotherapy to palliative care—gather to hear presentations from distinguished, experienced speakers. (These speakers are chosen through a blind abstract process similar to the one used to select Symposium presentations.) The purpose of the APF is to provide practice-based solutions that can be applied immediately to improve the care of people with MND everywhere. In 2014, we will hold the 12th annual APF.

Other activities

Aside from the organisation of these annual meetings, the Alliance has other programmes intended to help us meet our goals. Namely, we recognise outstanding members of the international MND community through the Forbes Norris and Humanitarian Awards; we provide critical funding to members in need through the Alliance Support Grant Programme; we encourage collaboration among our members through the Partnership Programme; and we celebrate Global MND Day each year with campaigns and initiatives that increase awareness of people with MND and their needs worldwide. (In 2013, we partnered with the MND Association to create an international Patients’ Rights Charter and encouraged members from all over the world to adopt and support it.)

All of this is to say, the Alliance is an organisation with many goals and programmes, but our fundamental idea is simple: Our members are united in the worldwide fight against MND. The Alliance provides an international community of support and information for member associations from all over the globe. And if we work together, we will achieve our vision—a world free from MND!

The MND Association’s vision is a world free from MND. Realising this vision means investing more in research, further developing partnerships with the research community, funding bodies and industry, while ensuring that advances in understanding and treating MND are communicated as quickly and effectively as possible. Our Research Development team, composed of 11 members, work hard to achieve this. Principally, the Research Information team within this are involved in communication activities including this MND Research blog.