Welcoming our new Chairperson!


We are delighted to introduce our new Chair: Dr Kirsten Johnson.

"I am married to Jonathan and we have three wonderful daughters, two of which are affected by Fragile X. We joined the Society in 2008 and have appreciated over the years the many ways it supports families. Now it is time to give something back! I am particularly concerned about how Fragile X affects girls and premutation (carrier) issues."- Kirsten Johnson.

Kirsten has a doctorate in music and is a concert pianist who has recorded fourteen discs of music for various record labels, which is played on stations around the world. She brings to the organisation media and public speaking experience; project development and management expertise; and experience of running a business. In addition, Kirsten has political experience, with a passion for developing good government policy which supports and enables each person in society. She is currently the Liberal Democrat Candidate for North Devon.

We are extremely grateful to Kirsten for volunteering her time and expertise to the Charity. In addition, we are grateful to our out-going Chair Craig McDonald, who has led the charity for the past 3 years.

"It is with an element of both sadness and pride that I pass on the responsibility of leading this fantastic charity. It is safe to say I have really enjoyed my experience, hopefully added value and made a number of friends in my time here - Trustees, families and the team at Great Dunmow.

I reflect on many successes and lots of fantastic feedback that we receive as an organisation on a very regular basis. As a parent in a family impacted by Fragile X, I personally know how valuable our service and support can be, particularly in difficult times such as transition, dealing with challenging behaviour or as a newly diagnosed family wondering how Fragile X might change our lives forever."- Craig McDonald.

We are also pleased to welcome Mark Smith as our new Vice Chair and grateful to Jenni Keene, Jo Woosnam-Savage and Rachel Instone who are taking on their voluntary roles for a further year: Treasurer, Secretary and Research Officer, respectively. All of our amazing Directors (the majority of whom are parents of people with Fragile X Syndrome, or have a personal or family link to Fragile X) volunteer their time and expertise to lead our charity.

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