Progressive MS Alliance

Scientific Steering Committee lay member ______

Background

The Progressive MS Alliance was initially established in 2011 as the International Progressive MS Collaborative. The mission of the PMSA is to expedite the development of therapies for effective disease modification and symptom management in progressive MS. The PMSA will accomplish its mission by employing research strategies that connect partners across multiple scientific disciplines and that fund innovative and collaborative research around the world.

Current Progressive MS Alliance members are:

·  Associazione Italiana Sclerosi Multipla (Italy)

·  Deutsche Multiple Sklerose Gesellschaft (Germany)

·  Esclerosis Múltiple España (Spain)

·  MS Research Australia

·  MS Society (UK)

·  Multiple Sclerosis International Federation

·  Multiple Sclerosis Society of Canada

·  Nationale Belgische Multiple Sclerosa Liga (Belgium)

·  National Multiple Sclerosis Society (USA)

·  Sclerose foreningen (Denmark)

·  Stichting MS Research (Netherlands)

Between them, these organisations have many years’ experience of MS research and have funded significant developments in research, disease-modifying therapies and symptom management treatments.

www.progressivemsalliance.org

The PMSA intends to include all partners that have a stake in this mission, including the voice of people affected by MS.

The Scientific Steering Committee guides the direction and research activities of the Alliance, and oversees the work of the Scientific Review Committees and the Scientific Operations Work Group. It consists of scientific experts and people with MS, appointed by Alliance members.

Purpose of the role

To monitor and contribute to the Progressive MS Alliance mission as an active member of the Scientific Steering Committee, providing a perspective based on personal experience of MS.

Responsibilities

·  Where possible, attend two formal meetings each year. Please note that this is likely to require international travel.

·  Participation in monthly teleconferences will likely be required.

·  Provide a perspective based on personal experience of MS.

·  Read and critically appraise relevant documents and contribute to discussion on the direction of the work of the Alliance.

Skills and qualities

·  Fluent in English (meetings and documents are all in English)

·  Good understanding of the science behind MS and the confidence to ask for clarification if necessary. Priority will be given to applicants with a sound understanding of the principles of quality research and ethics

·  Willingness to think broadly about MS and consider the questions and priorities that are most important to the diverse range of people affected by MS

·  Understanding of the impact of progressive MS on people’s everyday lives

·  Confidence to voice opinions and to actively participate in discussions with health professionals and scientists

·  Ability to listen, understand and respect differing opinions

·  Experience of taking an active role in decision-making in panel or committee meetings (including teleconferences)

·  IT literate, including use of Word, PowerPoint, Dropbox

·  Supportive of the use of animals in research where necessary

This role is open to people with personal experience of all types of MS, but we particularly welcome applications from those affected by progressive MS.

Training and support

·  Scientific Steering Committee members will be provided with an induction on the aims and objectives of the Progressive MS Alliance

·  Support will be provided by email and telephone before and after meetings by the UK MS Society’s Public Involvement Officer, Becky Driscoll. She will discuss the format with you so that you know what to expect beforehand.

·  Any necessary supporting documentation will be provided to you in an accessible format in advance.

·  All meeting venues and accommodation (if required) will have disabled access.

·  Your expenses will be reimbursed for attending meetings. This can booked in advance for you, if you prefer. If you have MS, you may be accompanied by a carer or partner in a support capacity if necessary.

Time commitment

This role is for a two year term initially. This is renewable for a maximum of three terms (i.e. six years), as long as you are able to meet the requirements of the role.

You will be asked each year if you would like to continue on the Committee. Throughout the duration of this period you will need to:

·  Read background documents prior to attendance at meetings and teleconferences

·  Attend face to face meetings twice a year

·  Participate in monthly telephone conferences

·  Be willing to travel internationally

There may be occasions when you are unable to attend a meeting or teleconference due to ill health or other personal reasons; this is, of course, absolutely fine.

To apply

Please answer the questions on the application form overleaf, and return to Becky Driscoll, Public Involvement Officer at the MS Society (UK)

Email:

Phone: 020 8438 0718

Post: Public Involvement Officer (Research team), The MS National Centre, 372 Edgware Road, London NW2 6ND.

The deadline for applications is 16 March 2015.

Shortlisted applicants will be contacted for a telephone interview, and up to 3 people will be appointed. If you have any questions about this role, please contact Becky.

Applications will be administered by the MS Society in the UK, but will be assessed by members of the Progressive MS Alliance, who will make the final decisions.
Progressive MS Alliance Scientific Steering Committee lay member application

1 / Your name
2 / Your contact details
Please provide your address, email, and telephone number.
3 / What is your connection to MS?
Please note that this role is only open to people who have MS, or who care for someone with MS in a non-professional capacity.
2 / What interests you about this position?
3 / What skills and/or experience do you have that will help you in this role?
Please refer to the skills and qualities listed in the role description, and try to describe why you think you are a good fit for this role.
4 / What do you think the role of a lay member is on this Committee? What approach would you take to this role?

Thank you for your interest in the Progressive MS Alliance.