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How Being A Charity Trustee Allows Me To #FightEB

I first became aware of the charity DEBRA shortly after the birth of our first son Finn, 15 years ago. He was born with the genetic condition Epidermolysis Bullosa (EB) - a potentially fatal skin condition that causes constant pain due to unstoppable internal and external blistering. EB sufferers have skin so fragile that it blisters and tears at the slightest touch, causing lifelong disability and pain. EB is currently incurable.

The condition has been genetically passed down on my side of the family, and being a sufferer of the condition myself, I found out during my pregnancy that I had a one in two chance of passing the gene on. My second son, born a year later, was also diagnosed with the condition. It was throughout both pregnancies, and during those first very daunting months as a new parent, that I really became aware of DEBRA and the support they deliver to EB patients. Looking after a small baby with EB is labour-intensive and filled with many questions; I needed assurance that I was doing the right thing in providing the most optimal wound care. I was guided and supported by a team of specialist EB nurses and paediatric consultants who are part-funded by DEBRA. These were emotionally conflicting and often frightening times for my partner and I. Joyous at being new parents and faced with the ongoing challenges that EB presents— this would affect all of our lives forever.

DEBRA’s support to my family continued as the boys turned into toddlers and onwards. They were frequently confronted with questions and had to deal with prying looks by others who were ignorant of the underlying condition. As teenagers, physical limitations bother them more and the regular appearance of new blisters, wounds, and scars comes to the forefront. DEBRA has been a key player throughout in helping them gain their independence and autonomy.

The next step was a logical one, and I was delighted when the opportunity arose for election onto the Board.

Becoming a trustee for DEBRA was not a decision I took lightly and my confidence did waiver a little once I accepted the position. Entering the boardroom for the very first time was a daunting prospect— I worried about my lack of previous experience of board membership and I questioned how I could add presence and value to an established, functioning board. I was also concerned about managing the generational differences which I believed would be a factor and I wondered if I had set myself too high a challenge which would ultimately be my nemesis.

Empowerment can manifest itself from fear, and I soon realised that DEBRA’s boardroom gave me the opportunity to really use this powerful position to make decisions that would make a real difference to the lives of people suffering from EB. Confidence has allowed me to grow in the role so much so that last year I was appointed as Chair for the Fundraising and Communications Committee. A recent opportunity has also arisen that would allow me to get involved with the International Committee, which supports the EB Community in over 50 countries.

Charities really thrive when they are governed by individuals from all different walks of life, with transferable skills. At DEBRA I was genuinely made to feel that my first-hand experience added real value to the organisation and I now realise that my contribution is making a real difference.

As a woman with two boys and a career, I understand the reservations that may come to those thinking they have nothing more to offer at board level, especially after maternity leave or career breaks. I also understand what it is like to think that you can’t possibly balance more in your day-to-day life. But in a world where women are invariably underrepresented at board level, being a trustee for DEBRA has allowed me to harness first-hand experience of living with EB alongside my professional experience as drivers to make change. The opportunity to continually grow and develop my own personal skills, and the fulfilment of knowing that I am making progress in an area I am passionate about, is critical to my life now.

I would like my personal journey to offer encouragement and possibility for women, especially those who are passionate about a particular cause, to consider trusteeship and use their strengths, ambitions, and interests to make significant progress within a charity. My role has allowed me to champion female leadership whilst working in an area that I am extremely passionate about, and I am driven by a desire to raise funds for pioneering research for symptom alleviation and, ultimately, a cure for EB.

The Charity Commission has an online register of over 160,000 charities where you can look for registered charities that may work in an area you want to make a difference in or that fight for a cause you are passionate about. If you want to know more about what it means to be a charity trustee, you can find more information on www.Trusteesweek.org.

 

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