AUTOIMMUNE ALOPECIA RESEARCH UK / MY PERSONAL STORIES

Autoimmune Alopecia Research UK


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To All My Amazing Loyal Followers!

I firstly apologise for having not written on here for such a long time but for the past 6 to 8 months my mind has been on a very important project so please forgive me.

As you all know Autoimmune Alopecia has been in my life since I was 18 years old. I have been Universalis since I was 21.  Any of you who know me and have read my blogs frequently will have heard my quest repeatedly……. The lack of research into this Autoimmune Disease bewilders me, frustrates me, shocks me, angers me and disgusts me all at the same time. To have suffered with an autoimmune disease for over a decade of my life, one which has impacted my life so much, I still find it incomprehensible that the medical profession should view it so lightly and treat it with such disregard.

Those who know me personally know that I can be slightly outspoken, however I say things how I see them and speak honestly and from the heart. I cannot sit back and accept a condition which has inpacted my life so massively, one which has no reasoning and no answers when there is MINIMAL RESEARCH BEHIND IT. If I had scratched the surface of research into Autoimmune Alopecia and found many projects being funded and medics working hard to find answers I would have found contentment in that and walked on my merry way with my Alopecia and waited patiently for someone to come up with an answer, a cure, hopefully in my lifetime. But what I found was something very very different.

The reality is this……. There is very little research out there and this disease has been left out in the cold when it comes to both the medical profession when dealing with new sufferers and the reserch profession in trying to find a cure.

WHY WHY WHY?  WHO KNOWS. But it is time for a CHANGE and that change will hopefully be in the form of Autoimmune Alopecia Research UK.

banner AARUK

I ask all my amazing followers to please log onto the new website

http://www.aar-uk.org

and PLEASE SIGN UP so we can keep you up to date of our progress.

And don’t forget to follow us on twitter and like our facebook page, both links are on the website !

Article in Womens Own Magazine initially trying to spread the word…. but we can achieve so much more as a united voice!

womens own article

It has taken many many months to get this charity to this stage of just getting the site launched and there is much much work still to be done but we will get there step by step and hopefully build some momentum and build something great for the future.

Things like this however do not happen on their own and WE NEED YOUR HELP!!! Prove how important this is. Tell people how much this condition impacts a person’s life. Get involved and show your support!

We have a list of volunteers throughout the UK which we would like to thank because as we all know without volunteers there would be no charity!

Sheelagh Richardson and Emma Coughlan as Board members and volunteers,

Christina Forsyth
Carol Anne McKenzie
Hilary Rhymer
Mel Foster
Chrissie Armstrong
Kayleigh Winter
Emma Hirst
Adiel Shafiq
Sara Poulson
Emma Victoria Nelson
Alice Frost
Melanie Doig
Duncan Hamilton
Ally Cutler
Aidel Hanovitch
Drew Beckett
Louise Holtam
Karen Green
Nick Hawkes
Aoife Ni Riain

A huge thanks also to Paul Keenan our web developer who worked tirelessly to build that website, under pressure during the past 3 manic weeks! (you can follow Paul Keenan on twitter @MoonShine781)And to the 45 people who kindly gave us images of themselves for the homepage of the website! Very proud!

So one last time I ask of my lovely, fantastic, beautiful, amazing and strong followers,

PLEASE SIGN UP

PLEASE SPREAD THE WORD OF AARUK

PLEASE GET INVOLVED IN ANYWAY YOU CAN AND HELP US TO RAISE FUNDS FOR MUCH NEEDED RESEARCH INTO AUTOIMMUNE ALOPECIA.

So lets all please raise our glasses to the launch of the website Autoimmune Alopecia Research UK and to it’s success in the future!

“Switch on Research.  Switch off Autoimmunity”

Jayne Waddell xxx

4 thoughts on “Autoimmune Alopecia Research UK

  1. Hello Jayne, Thank you for your posts and keeping us up to date with recent thinking regarding alopecia. I have been AU for 6 years now but summoned the courage last year to be photographed by Daniel Regan for his project on raising awareness of alopecia. He had an exhibition in London last year and is having another in Edinburgh soon and is also thinking of putting his photos into a book. He has photographed 38 people now of all ages. He has a blog called http://www.funnytimeofyear I apologise if you know all this but just incase you don’t… Lyn Gray

    Date: Wed, 27 Feb 2013 08:39:13 +0000 To: lyn_gray@hotmail.com

    • Hi Lyn!
      Thank you so much for the info on Daniel’s work! I have seen his work and met Daniel, and yes his images are very powerful and he and AlopeciaUK are doing amazing things for Alopecia and raising the profile. It is brill to see everyone getting involved. I did not make the London exhibition but most certainly will make the Edinburgh one so I shall look out for your pics! You are very good getting involved, I did think about it when I was in London but didnt have the mindset!

      Thanks again for posting and please have a look at the new research site and sign up for latest news

      http://www.aar-uk.org

      All the best

      Jayne x

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