Why everyone affected by MS is talking about the Alliance

11 December, 2017

There is a saying “If you want to go fast, go alone. If you want to go further travel together.” But how do we go faster together?

That very essence is the key ethos of the International Progressive MS Alliance. How do we collaborate seamlessly with multiple countries and stakeholders and make rapid progress at the same time?

Convening the global stakeholders to help unravel the complexities of the most frustratingly complex part of MS was never going to be easy. Bringing the greatest scientific minds from all over the world to concisely agree on the research direction wasn’t either. Research leaders from the member organisations had to be in lockstep with each other. Industry and regulators had to begin a new era of sharing knowledge and working together. However, in a relatively short period of time, all of these things have been achieved.

Why is it important for people affected by MS?

People with primary or secondary progressive MS have not had many of the incredible benefits that successful MS research has brought to those with relapsing disease. Many have felt that all of this success was great but when would similar attention be turned to progressive MS? When was “my MS going to be addressed?” These were fair and valid questions. So, to help answer that, the global “Alliance” was formed. Now 14 countries strong with 6 managing member organisations (including Australia), this collaborative is now positioned to make some real impact.

It is also often said to us by people with relapsing disease, even if their MS is currently well controlled, that the Alliance provides a great deal of comfort should their MS take a turn for the worst or progress with time.

The Alliance’s 4 priority research areas?

  • Better understand progression in MS
  • Design shorter, faster clinical trials
  • Conduct trials to test agents
  • Develop and evaluate new therapies to manage symptoms

How are people affected by progressive MS involved in the priority setting and grant-making?

The Alliance has three integral members of the scientific steering committee who have been or are affected by progressive MS. They are Jonathan Strum (USA) who was a carer for his wife who sadly passed away from progressive MS, Alexis Donnelly (Ireland) who has primary progressive MS and Caroline Sincock (England) who has secondary progressive MS. The three were chosen by a selection panel from over 500 international applicants for the roles and all play an important part in guiding the Alliance.

What has it achieved so far?

  • Focussed the minds of the best MS researchers on progressive disease – over 550 MS researchers already involved
  • Built a strongly governed initiative with aligned “shared values” and solid processes around grant applications and grant making
  • Leveraged an impressive €23 million in total research funding globally for progressive disease
  • In collaboration with MSIF and member countries’ own advocacy, assisted the approval of the world’s first licenced therapy for progressive MS in the US, Australia and Europe
  • Provided a vehicle for many countries to fundraise for research, some of whom had not done so before
  • Expertly identified the barriers to success as well as prioritising what needs to be done next
  • Built a strong culture of “kinship” and “working better together” amongst the countries that significantly fund MS research as well as giving smaller countries the opportunity to be involved

How is it governed?

It is governed by an Executive Committee made up of the CEO’s of the six managing organisations: Cynthia Zagieboylo (Chair) (USA), Matthew Miles (Vice-Chair) (Australia), Peer Baneke (CEO MSIF), Mario Battaglia (Italy), Michelle Mitchell (UK) and Sylvia Leonard (Canada).

Who runs and guides the scientific direction and research activities?

The Scientific Steering Committee consists of 20 scientific staff, volunteers and people affected by MS. It is chaired by Professor Alan Thompson (UK). Australian members are Professor Bill Carroll, Neurologist and Chair of MS Research Australia’s International Research Review Board and Dr Lisa Melton, MS Research Australia’s Head of Research. Other experts are brought in to scientific review committees as needed. The scientific steering committee set the strategic priorities and review the proposals that are submitted to the Alliance for their scientific merit and alignment with priorities.

The National MS Society (USA) is providing great leadership and substantive financial investment for the operations of the Alliance. But the true success of this collaborative lies in the way it has been able to inspire, galvanize and engage many, many countries in our effort to help the 1 million+ people worldwide living with progressive MS.

Visit www.progressivemsalliance.org for more information.

Matthew Miles

@matthewwmiles

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