Rare Leader: Kerry Leeson-Beevers, National Development Manager, Alström Syndrome UK

The Basics
Name: Kerry Leeson-Beevers

Title: National Development Manager

Organization: Alström Syndrome UK

Disease focus:  Alström syndrome is an ultra-rare genetic condition that can affect every organ in the body. Alström Syndrome is characterized principally by progressive retinal degeneration, nystagmus (wobbly eyes), photophobia (sensitivity to light), hearing loss, obesity and insulin resistance, leading to type 2 diabetes. It can also include a weakened and enlarged heart, kidney and liver dysfunction, and bladder and bowel problems.

Headquarters: Devon, United Kingdom

How did you become involved in rare disease: My son was diagnosed with the condition at age 2. He’s 17 years old now. After his diagnosis, I joined the board of ASUK and then started working for them in a paid position in 2009.

Previous career: I managed a pub.

Education: Currently completing a bachelor’s degree in leadership and management with the Open University

The Organization
Organization’s mandate: Alström Syndrome UK (ASUK) was set up as a patient-led organization and 50 percent of our trustees are personally affected by the condition. The charity helps to bring individuals and families together and offers support. We were instrumental in the development of the first multidisciplinary clinic in the U.K. for patients diagnosed with Alström Syndrome and we work in partnership with a team of specialists in Birmingham, U.K., to deliver the highly specialized service which is funded by NHS England. We support families within the clinic setting, but also work with families at home and with the professionals working with them. We promote research and work with pharmaceutical companies to support clinical trials. Our aim is to support and improve the lives of people living with Alström syndrome where possible, and we do this in a variety of different ways.

Organization’s strategy: We are currently developing our five-year strategy. Our priorities will be to continuingly develop the family support service and maintain our National Health Service contract and the funding we already have in place. We are also developing new opportunities to expand our Breaking Down Barriers projects by working with other organizations to develop supportive and inclusive services for people from ethnic minority communities. The strategy is to maintain and develop what we’ve got now and look for new opportunities to work more widely around rare diseases in general.

Funding strategy: To fulfil the requirements within our NHS service specification to maintain funding over the coming years. We have a rolling two-year contract, and although we are reassured this is set to continue, we can’t be too reliant on this and need to ensure we have other funding streams. We’re always looking for unrestricted funds where we can maintain the level of staff we have now, but we also aim to have pots of money where we can provide equipment for our members, provide activity breaks and invest in research.

What’s changing at your organization in the next year: Hopefully nothing much. We have had quite a few changes over the past few years and ASUK is in a good place at present. We have a new CEO and a couple of new trustees and members of staff. We hope that we can continue being stable for a few years to provide consistency to our members. However, we will always look for new opportunities to enable us to improve the support we offer to individuals and families.

Management Style
Management philosophy: I am a fair manager and feel that I am supportive. I want staff to feel they have a voice within our organization and the freedom to try and experiment with new ideas, where appropriate. Everyone works from home, and it can be challenging to manage from a distance. Everyone has a clear job description, communicates regularly, and knows what’s expected of them.

Guiding principles for running an effective organization: We have a shared vision. We meet regularly and talk about what’s important to us as an organization and what’s important to individuals. I also encourage staff to challenge me and we operate in an open and transparent way. As a patient-led service, we regularly our work and carry out consultations with our families.

Best way to keep your organization relevant: Because we represent a very specific condition that is ultra-rare, it’s important that we work in collaboration with other rare diseases. I’m a patient representative on the U.K. Rare Disease Policy Board. The board is responsible for coordinating policy developments to ensure the 51 commitments within the rare disease strategy are met to provide and improve the support to rare disease patients in the U.K. This helps us to ensure that our work remains current and relevant. If any issues arise at a policy level, we are able to act very quickly as an organization.

Why people like working for you: I have worked for the charity for a long time and I’m personally affected by the condition. The fact that I have a child with the condition means that I have an understanding of what it’s like to live with Alström Syndrome. Staff like that I am extremely passionate about what I do. I will always make sure staff gets recognition for their achievements, and I never take credit for somebody else’s work.

Mentor: I’ve learned a great dealy from my CEO Ann Chivers in the short amount of time she’s been here. My other mentor is my mother. She’s taught me a lot about the type of person I want to be and encouraged and supported me every step of the way.

On the Job
What inspires you: The individuals and families I work with inspire me.

What makes you hopeful: The developments in research and that there is more interest in rare diseases than there was when I started. While I don’t believe there will be a cure for Alström syndrome in my lifetime, I am hopeful that new treatments coming along and developments in genetic research will help scientists and clinicians to improve their understanding of this condition.

Best organization decision: To remain a patient-led service and to involve patients in what we do.

Hardest lesson learned: Not everyone has the same values and beliefs as me and I will always fight for the rights of patients. Also, sometimes funders’ attitudes can differ, so it is important to carry out research prior to submitting grant applications.

Toughest organization decision: Reducing the amount of funding we could spend directly on families during the financial crisis in the U.K. While we managed to maintain the level of support, we weren’t able to provide them with some of the financial support they needed.

Biggest missed opportunity: For me, not finishing college and going to university straight from school.

Like best about the job: The direct work with families with the condition

Like least about the job: It’s my time away from my family.

Pet peeve: People being tokenistic. When people say they want to involve patients but then don’t listen or act on anything they say.

First choice for a new career: A doctor

Personal Taste
Most influential book: Discovering Leadership, edited by Jon Billsberry

Favorite movie: Chick flicks – Dirty Dancing, Pretty Woman, things like that

Favorite music: My son loves taking me to rock concerts.

Favorite food: Anything vegetarian, but no goat cheese

Guilty pleasure: Alcohol

Favorite way to spend free time: With my family

July 5, 2018