Meet The ED Team
Diana Perry
As Founder and CEO of the Ectodermal Dysplasia Society, Diana has worked on a full-time voluntary basis since 1996. She is married to Ian and has 5 children, two of whom are affected by Ectodermal Dysplasia.
She has gained considerable experience of Ectodermal Dysplasia (ED) over the years, and having two affected children has provided her with first-hand experience, empathy, compassion and the personal touch.
Diana is driven by her passion to help the ED community cope with their daily struggles. She fights to ensure individuals and families have all the information they need to receive the benefits they are entitled to, and a duty of care in school and the workplace. She oversees everything the Society does including research, and any international collaboration.
Diana is the energetic force in the ED Community, leading with her heart in all that she does.
Outside of work……
“I enjoy spending time with family, doing crosswords and puzzles, and eating chocolate!”
Danielle Gue
Danielle joined the Society in 2015 as an Administrator. Having many job title changes over the years, she is now the Society’s Fundraising and Marketing Officer.
She previously worked in an accounts team at a hotel and had no previous knowledge of Ectodermal Dysplasia before she joined the charity.
Danielle lives with her husband, 2 young children and their dog Poppy.
Danielle is responsible for keeping all our social media platforms current; updating our website; producing mailings and marketing the charity to help bring Ectodermal Dyplasia and the Society to the forefront.
Outside of work……
“I like to keep fit by attending a boot camp class twice a week, as well as being part of a Netball fun league. On weekends you’ll find me enjoying family time, such as countryside walks, days out and being a football mum at my sons matches.”
Diana Perry
As Founder and CEO of the Ectodermal Dysplasia Society, Diana has worked on a full-time voluntary basis since 1996. She is married to Ian and has 5 children, two of whom are affected by Ectodermal Dysplasia.
She has gained considerable experience of Ectodermal Dysplasia (ED) over the years, and having two affected children has provided her with first-hand experience, empathy, compassion and the personal touch.
Diana is driven by her passion to help the ED community cope with their daily struggles. She fights to ensure individuals and families have all the information they need to receive the benefits they are entitled to, and a duty of care in school and the workplace. She oversees everything the Society does including research, and any international collaboration.
Diana is the energetic force in the ED Community, leading with her heart in all that she does.
Outside of work……
“I enjoy spending time with family, doing crosswords and puzzles, and eating chocolate!”
Danielle Gue
Danielle joined the Society in 2015 as an Administrator. Having many job title changes over the years, she is now the Society’s Fundraising and Marketing Officer.
She previously worked in an accounts team at a hotel and had no previous knowledge of Ectodermal Dysplasia before she joined the charity.
Danielle lives with her husband, 2 young children and their dog Poppy.
Danielle is responsible for keeping all our social media platforms current; updating our website; producing mailings and marketing the charity to help bring Ectodermal Dyplasia and the Society to the forefront.
Outside of work……
“I like to keep fit by attending a boot camp class twice a week, as well as being part of a Netball fun league. On weekends you’ll find me enjoying family time, such as countryside walks, days out and being a football mum at my sons matches.”
Jaye Dix
Jaye joined the Society in 2017 as family liaison/administrator, and is now the Family Liaison officer. She previously worked as a beauty therapist.
Jaye lives with her partner and 2 young children.
She is responsible for corresponding with our ED families; managing the Society’s database; monitoring our private Facebook support group; assisting families with letters of support and other general administration duties.
Outside of work……
“I love spending time with my family and having days out with my children. I enjoy relaxing at home, but also going out with friends! I eat A LOT of chocolate!”
Elly Lomas
Elly joined the ED Society in January 2022. She has previously worked for Whitbread and British Telecom in Customer Service & Training roles.
She has joined the team as Finance Administrator and is responsible for performing a variety of financial and administrative duties, including account reporting to the Trustees and helping our ED family members with advice . Although she did not have any previous knowledge of Ectodermal Dysplasia, she has known the team for a number of years.
Elly lives with her a teenage son and their Jack Russell ‘Peanut’.
Outside of work……
“I enjoy cooking and gardening. At weekends you’ll find me at my sons rugby training or traveling to his away games. I much prefer Autumnal months, and like to take country walks followed by a stop for coffee & cake along the way.”
Jaye Dix
Jaye joined the Society in 2017 as family liaison/administrator, and is now the Family Liaison officer. She previously worked as a beauty therapist.
Jaye lives with her partner and 2 young children.
She is responsible for corresponding with our ED families; managing the Society’s database; monitoring our private Facebook support group; assisting families with letters of support and other general administration duties.
Outside of work……
“I love spending time with my family and having days out with my children. I enjoy relaxing at home, but also going out with friends! I eat A LOT of chocolate!”
Elly Lomas
Elly joined the ED Society in January 2022. She has previously worked for Whitbread and British Telecom in Customer Service & Training roles.
She has joined the team as Finance Administrator and is responsible for performing a variety of financial and administrative duties, including account reporting to the Trustees and helping our ED family members with advice . Although she did not have any previous knowledge of Ectodermal Dysplasia, she has known the team for a number of years.
Elly lives with her a teenage son and their Jack Russell ‘Peanut’.
Outside of work……
“I enjoy cooking and gardening. At weekends you’ll find me at my sons rugby training or traveling to his away games. I much prefer Autumnal months, and like to take country walks followed by a stop for coffee & cake along the way.”
Kelly Phelan
Kelly joined the ED Society in Summer 2022. She had gained some experience earlier in the year by working on a volunteering basis within the office.
Previously Kelly has worked at The Co op and Chelsea Building Society.
Kelly’s current role is to assist with general administration tasks and to assist the ED team.
Kelly lives with her husband and has 2 young children.
Outside of work……
“I enjoy spending time with my 2 children and husband for days out, holidays or chilling on the sofa. I like to watch the rugby and darts and when given the opportunity to watch it live. Socialising with friends and family is important to me.”
Kelly Phelan
Kelly joined the ED Society in Summer 2022. She had gained some experience earlier in the year by working on a volunteering basis within the office.
Previously Kelly has worked at The Co op and Chelsea Building Society.
Kelly’s current role is to assist with general administration tasks and to assist the ED team.
Kelly lives with her husband and has 2 young children.
Outside of work……
“I enjoy spending time with my 2 children and husband for days out, holidays or chilling on the sofa. I like to watch the rugby and darts and when given the opportunity to watch it live. Socialising with friends and family is important to me.”
ED Society Ambassador
Hannah Harpin
The ED Society are excited to announce our new Ambassador, someone whose journey is nothing short of inspiring and whose dedication promises to be a game-changer for our mission.
Our new ambassador is none other than Hannah Harpin, a remarkable girl who has overcome numerous challenges in her life, and is currently making waves in the world of modeling. She boasts a significant presence on social media and in the fashion industry, and we are overjoyed that she has accepted our invitation to advocate for our cause. We have known Hannah since she was a baby, and we have had the privilege of being her first port of call for support. Over the years, we have built a strong and lasting relationship with her and her family.
Hannah has faced adversity with incredible tenacity and strength. She sadly experienced severe bullying during her school years, but refused to let it define her.
We stepped in to support her and provided funding for some of her wigs, and it warms our hearts to see how she has not only thrived, but also risen above the challenges posed by bullies.
Today, she is a powerful activist for ableism and disability rights, fearlessly championing her cause and empowering others to do the same. What is truly remarkable about Hannah is that she has turned her experiences into a force for change, and we are honored to have her on board as an ambassador for our charity.
With her passion and dedication, we believe she will play a crucial role in helping us bring Ectodermal Dysplasia into the spotlight, advance our mission, and promote our cause to a wider audience.
Hannah has expressed her enthusiasm for her new role – “Being an ambassador means the absolute world to me. I first met someone who had the same condition as me, and his name was Fergus. Fergus taught me everything on how to become an ED ambassador and I’m glad to be following in his footsteps.
I can now help children with ectodermal dysplasia, to help them reach their goals and give them something which I didn’t have as a child. I’m hoping to help women with ectodermal dysplasia too!”
Patron of the ED Society
Fran Jones
In 2020, we were very fortunate to have made contact with up-and-coming 20-year-old tennis player Francesca Jones, who was born with Ectrodactyly Ectodermal Dysplasia (EEC), which affects the fingers and toes.
Fran has three fingers and a thumb on each hand, three toes on her right foot, and four toes on her left. She also started life with webbed fingers. When playing tennis, she needs to use an extra lightweight racket with a thin handle to help accommodate her grip.
In 2020, Fran qualified for the first time at the Australian Open. She ranked 241 in the women’s singles having never featured in a grand slam. Fran was the only one of Britain’s five entrants to make it past the opening round of the qualifying events.
As of April 2021, her ranking with the Women’s Tennis Association (WTA) is world No. 190.
Francesca made her Wimbledon debut on 29th June 2021 against Coco Gauff.
We are thrilled Fran has agreed to come on board as a Patron of the ED Society and excited to have gained such celebrity endorsement.
Fran wants to help and inspire others to overcome adversity as she has done. “The greatest thing in life is to do what people say you can’t do”.
We are grateful and hopeful that with her story to share, her support, social following, and media coverage, we can continue to raise awareness of Ectodermal Dysplasias and the ED Society’s mission together.
You can follow Fran on Instagram here – @fran_jones_
Francesca sure has been making the headlines! You can read some of the latest articles here –
“Wimbledon was the place I began to believe in myself and to aspire to achieve my dreams,” – July 2023
How medical marvel Fran Jones won a spot with the big guns at Wimbledon – June 2021
Brit Fran Jones born with three fingers and a thumb on each hand defies rare condition to qualify for Australian Open – January 2021