By Karen Walker, Chief Executive, MSA Trust

Published: 31 August 2023

AMRC’s Festival of Partnerships is shining a light on partnering – how best to do it, the challenges it brings, and showcasing great examples from the sector. A highlight of the Festival so far has been hearing from our member charities about the diversity of ways in which to partner: with each other, industry, government and more. We didn’t think it was fair to keep all these insights to ourselves. So, in this ‘Showcasing Partnerships’ blog series we’ll be hearing from some of our charities about these partnerships, their challenges and successes, as well as lessons learnt.

In this blog, we hear from Multiple System Atrophy (MSA) Trust’s Chief Executive, Karen Walker. MSA Trust is the only UK-based charity supporting people living with MSA. MSA is a progressive neurodegenerative disease that is often mistaken in early stages as Parkinsons. It is referred to as an atypical Parkinsons and causes problems with the autonomic functions, such as blinking, swallowing, balance, breathing and ultimately will end a person’s life in seven to nine years. The charity’s research looks into the cause and the cure. There are three strands to its research strategy, including a partnership with the Association of British Neurologists (ABN) supporting a Clinical Research Training Fellowship in MSA; a grant award programme; and a database for researchers, called Prospect-M, in collaboration with PSP Association and maintained at UCL institute of Neurology. 

Multiple System Atrophy TrustWhat is your role at your charity and what does a typical day look like for you?

Our charity has a small team and as Chief Executive, it is my role to ensure that each department and every member of staff is cared for and nurtured to develop their highest potential. I look after the research side with incredible support from one of our nurse specialists, also trained in research, Emma Saunders; and via our Trustee and voluntary Chair of the Scientific Advisory Panel, Dr Chris Kobylecki. I don’t think I can describe a typical day, but one of my favourite days is when the SAP come together to award funding to researchers who are helping us to reach that key goal of earlier diagnosis.

Tell us about a partnership your charity has been involved in.

A key partnership for us is with MSA Coalition, a USA based non-profit organisation that supports research and people with MSA. In 2014, with the help of significant funding from a well-known American TV chef (who has since died from MSA) a roadmap was developed by researchers who had worked with both organisations, here in the UK and around the world. The roadmap that was developed has helped us to define key objectives for our research strategy. It has given us a marker of what we wish to achieve in all areas of research in MSA and support for people with MSA.

What were the main benefits of this partnership as opposed to doing the same project alone?

The roadmap covered six key areas:

  1. To develop a road map for MSA-related research.
  2. To identify critical needs / barriers to advance MSA research
  3. To further acquaint funding agencies with MSA and unmet research/therapeutical needs
  4. To further global coalitions and collaborative efforts to advance research in MSA
  5. To engage pharmaceutical and biotechnology companies in discussions on MSA therapeutic development
  6. To elevate awareness of MSA through publicity, publication resultant from the meeting and engagement of stakeholders for MSA advocacy

Having these six priorities has given us a guideline on which to base a lot of research and some advocacy work on. In fact, by developing the advocacy side we have become a bit of a leading light in supporting people with MSA around the world and being able to share that to help other organisations has been great. We have worked closely with MSA Coalition to ensure that our priorities are aligned and to share best practice. Between us, we can support some smaller organisations who do not necessarily have the resources, to enable them to develop their offer to researchers and people with MSA from around the world.

Group photo of those in the MSA Coalition in Bologna

What makes charities such good partners?

Key to being a partner is the ability to share information and to work collaboratively. The governance of our organisations is very different due to tax law, regulatory restrictions and storing data. So, having a common goal in the roadmap gives us clarity when trying to identify how best to support the needs of the MSA community.

What are the main challenges you’ve faced in partnerships and how did you overcome them?

The main challenges are in the areas mentioned above, combining work on research or advocacy between different countries can be quite challenging and requires careful consideration, due to governing law of each country. It can, however, be overcome and having to do that can lead to other benefits in determining how to relate to international research groups.

If you could give one tip to another charity entering a similar partnership, what would it be?

Keep the communication channels open, be prepared to compromise, be willing to listen.

If your charity has a partnership you’d like to share via this blog series, we want to hear from you! Get in touch with Ellen at [email protected]. Read other blogs in the series on our Festival of Partnerships: blogs page.

MSA Trust logo
Group photo of members of the coalition in Bologna