MEET THE TRUSTEES

About Us

We are a group of people who are passionate about supporting those affected by Hereditary Multiple Exostoses (HME). As Trustees of the UK registered charity HME – The New Generation, we are responsible for the day-to-day running of the group but also the important role of meeting the charity’s objectives. We are friendly, outgoing and between us have a wealth of experience with HME. You can contact us by email at [email protected]

Dawn Searle

I am Dawn Searle and I am a trustee focusing on events and ongoing support. My son Rob, who is now 32 years old, has a spontaneous case of HME. He has had quite a lot of surgery over the years and we havehad experience with school, surgery, bullying, and living with a rare bone condition. My passion is for HME-The New Generation to support those affected or their families with HME not to feel isolated. We are like a family that gets what you’re going through in life.

Leigh Edwards

My name is Leigh Edwards and I am a trustee for the charity. My role mainly within the charity is to take a lead with safeguarding and support with the day to day running of our successful charity. My connection to HME is that I have the condition and I am second generation. My mother was spontaneous, and I have passed HME onto my daughter who is 25. As a family we have combined experience of over 160 year and are well versed in how the condition can affect you at various stages in your life. I try to adopt a positive approach and can-do attitude to being a sufferer with HME. I live in Chester and my day job is as a manager for children’s services for a local authority. Whilst I find the role very rewarding it can be stressful at times. My daughter is a primary teacher for a local school and teaches a year 6 class. As with any sufferer with HME I have had numerous surgical procedures over the years and managing the condition daily can be a challenge. By adopting a positive mental attitude and use of exercise this has helped to maintain the condition for me although it is hard work and having to motivate yourself for those regular gym visits. I have found that Pilates has been a revelation. My daughter too has had surgery. However, I take pride in that she has not allowed the condition to inhibit her in any way. She is now a successful teacher and whilst HME is still a challenge she has not allowed this to affect her career or social life. As I get older, I find HME presents new challenges and I am continually looking at new ways to support myself on my journey with the condition. I would be happy to share my experiences with members both as someone with the condition but also as a parent of a daughter with HME.

Helen Small

Hi, I am Helen Small and I am a previous Chair of the Board of Trustees (1997-2024), and now an honorary member of the group. My connection with HME is through my 33-year-old son who was diagnosed when he was eight months old and is a spontaneous case.

He had a lot of surgery throughout his childhood, with ulnar lengthening procedures at both five and 11 years. These were tough times and he missed a lot of schooling. He is now married and lives and works in America.

I have three other grown-up children and live in the Oxfordshire area. I have been involved in the HME community on and off for a few years now and remain passionate about offering support to those who need it and getting people together both online and in person.

Kate McEvoy

My name is Kate McEvoy and I amone of the trustees of HME New Generation who has joined just over a year ago. I have HME in the family, together with my Husband, Son, Father in law and brother in law. My son is now five and we have found out he had it when he was just a baby. I have found the conferences and social aspects, along with the Facebook group to be a great support and information very useful.

Lynda Tams

My name is Lynda Tams, I currently live in Warrington, Cheshire, but I am due to move to Bourne in Lincolnshire later in the year. This will allow my husband and myself to give support to our son and his lovely twin daughters who are soon to be one year old. My connection with HME is through my son, Adam, who is now 31 years of age. Adam was first diagnosed at the age of nine months old and has had a number of operations. Adam is a spontaneous case, as I am not aware of any of our family members having the condition. When we first got the diagnoses like a lot of you, we were devastated as we were not aware of the condition, its implications on Adam’s life and back then there was not much information out there relating to HME. That is one of the reasons I got involved with the group when it first set up along with Dawn and Helen as I did not want any member to feel alone.

Minna Korjonen

My name is Minna, and I was diagnosed with HME (genetic) since birth but found the HME community only in my adulthood and joined our board in 2023.

I am a professional providing services in education and the consultation field, and volunteering in different charities nationwide, including the local foodbank.

My passion lies with those most vulnerable; disabled, children and elderly. I am currently representing their voice as NHS governor, and in various boards and committees in health and social care and housing sectors, both locally and nationally.

I carried the publics voice over the years across the health and care sector to make difference and improving the access to care – with deep understanding the issues disabled and vulnerable people are facing every day in terms of health and social care, access to and overall quality of services.

The center of my work has always been to ensure that the publics voice is heard directly around the tables where the decisions are made, and in times of financial pressure also faced by organisations and wider within the NHS I am involved as representative, in terms of maintaining high standard of care without forgetting the importance of improving the services when needed.

I joined the HMENG Trustees Board to widen the charity’s network and to raise awareness of HME including the challenges our members face in everyday life, through my leadership roles in a board and committee in health and social care sector and to ensure our voice is heard in terms of accessibility, services and quality of care.