I'm Alopecia UK's Communications and Fundraising Manager, Amy Johnson. I started volunteering for Alopecia UK back in November 2012 and became Communications Manager in July 2014. My new role as Communications and Fundraising Manager commenced in February 2016.
How did I get involved with Alopecia UK?
I met fellow Alopecia UK manager, Jen Chambers in May 2012. She thought I could contribute a lot to the charity so I came along to a charity meeting in November 2012 and immediately came away with a list of jobs!
What is my 'alopecia story'?
I have had alopecia for the past few years. I first spotted two small patches in October 2007 (age 24). I went to my GP who diagnosed alopecia areata. I wasn't sure what to expect. However, the two small patches quickly re-grew and I forgot all about it. I thought that it was gone, never to return. Oh, how wrong I was!
In February 2010, my hair started falling out in large clumps. By July 2010, I had very little left so made the decision to shave off the remainder of my hair. My eyebrows and lashes disappeared a week or so later. I was somewhere between alopecia totalis and alopecia universalis for over 18 months (I never lost my underarm hair which is why I was never officially AU!). Over the past few years, my hair has started to grow back a bit. Any re-growth is patchy and prone to fall out again (the frustrations of alopecia areata!)
I'm comfortable with my alopecia these days but I would still love for my hair to make a full return.....although that would take some getting used to should it happen! Although I am at ease with my hair loss, I remember vividly how hard my first year with alopecia was. It's for this reason that I am passionate about helping others with alopecia.
What are my hopes for Alopecia UK ?
I would like to see Alopecia UK build on the strong foundations it has established since the charity began in 2004. I want the charity to be able to provide more services for those with alopecia through an extended support group network. I'd like Alopecia UK to continue its work in raising awareness of the condition. I believe awareness is key to having our voice heard. I hope that the charity can continue to grow and I will be assisting with the charity's fundraising. The more revenue the charity can bring in, the more we can do. Eventually, I'd like to see the charity have sufficient resource to fund research projects that may lead to better treatments, or perhaps even a cure.