Paul Whitehouse Chairman Expand Prior to the birth of my second daughter on the 5th of November 2004, I had never heard of the skin condition known as ichthyosis. Having already been blessed with a beautiful daughter Lydia Mae some 3 years earlier I never imagined her baby sister would be afflicted with an extremely rare congenital condition with a name I could not pronounce. Annabelle was born a collodion baby, another medical term I had never heard of. There were so many questions and not many people knew the answers. The family were faced with an array of emotions and worries and we needed answers. We were extremely fortunate to be referred to Professor Celia Moss at Birmingham Children’s Hospital who took us under her wing and provided us with a diagnosis of Annabelle’s condition, she has CIE. Professor Moss also recommended that we contact the Ichthyosis Support Group (she is an active member of the ISG’s Medical Advisory Board). We made contact with the ISG and ultimately became members. It was a comfort to us as a family that there was an organisation out there that we could turn to for support. We attended the 10 year anniversary of the ISG in 2007 and it was at that event that it was suggested to me that I might wish to become more involved with the group. My first reaction was that I have more than enough in my life to contend with without taking on more – but it got me thinking. After a little more cajoling I accepted an invitation to attend a meeting of the group and eventually made the decision to become actively involved. I accepted the offer to become Chairman of the group on the 25th January 2008. If you were to ask me why I decided to become a trustee my answer would be that quite simply I want to help to make a difference. I am reminded everyday when I look at my beautiful daughter Annabelle that I want to do all I can to make things better for her and in so doing all the families affected by ichthyosis and of course all those families who have yet to face this distressing condition. I am privileged to be part of a special group of people who sit on the ISG committee and who give of themselves their time and commitment (for no financial reward) to running the ISG. Without their resolve and determination the ISG would not exist and that would be an enormous loss. As you may be aware the ISG has no income other than that it generates for itself through members fundraising activities, donations and by applying for grants. We need to constantly generate funds to pay for the ‘infrastructure’ that constitutes the ISG. We often refer to fundraising opportunities and as an example if every one of our 1400 member families were to raise just £100 each we would generate £140,000! Between us all we can make a difference, we can support research initiatives into the condition, we can raise awareness of the condition within the medical profession, support our members in all sorts of activities, and ultimately make life better for families and individuals who live with ichthyosis on a daily basis. Thank you for reading this, please do get involved, do as much or as little as you can – every little helps. Remember we also have our Fundraising Guide which will give you ideas on how to go about raising funds, once you get started there will be no stopping you!
Maggie Aldwin MBE Co-Founder and Trustee Expand My daughter Mandy (please refer to her profile) was born in 1976 in the Royal Berkshire Hospital. She was 5 and half weeks early and very poorly, and they whisked her off to intensive care without me even having a cuddle. My husband was unable to be with me at her birth, and I remember being asked if I was related to him – apparently she had a rare genetic skin condition, which they later advised me was ichthyosis. Everyone’s heard of eczema and psoriasis – but ichthyosis…? There was no internet, or access to much information back then, and there was still very little when 20 years later Prof John Harper invited ichthyosis families to a meeting at Great Ormond Street Hospital (GOSH) to discuss the possibility of setting up a support group. He had been asked by Pamelia Catlyn, a parent of a young boy with ichthyosis about being able to exchange information with other families. Mandy and I attended that first meeting, and in 1997 together with Pamelia we helped to found the Ichthyosis Support Group (ISG). We were just 6 families. Duly elected Treasurer, I opened the ISG’s first bank account with a £50 cheque donated by Contact A Family www.cafamily.org.uk who had also provided us with invaluable advice and guidance on how to get the group started. I continued in the role until 2009, when my close friend Rex Codling (an experienced charity treasurer) took over the role for 4 years. Rex guided us through incorporation, and employing our first member of staff, however I was re-elected as the ISG’s Treasurer when Rex stood down early in 2013. In addition to ‘keeping the books’, I initiated the first ISG conference, which was held at GOSH in 1999. These annual events have developed and grown over the years and our Medical Advisory Board has always supported us by providing talks and chairing workshops for our families. The event continues to be an eagerly awaited fixture on the ISG calendar attracting up to 70 families (300 individuals) each year. The ISG has always been keen to develop relationships with other like-minded associations, and in 2010 we joined with other European counties to form the European Network for Ichthyosis (eni) and I was delighted to accept the position of President. This network has resulted in an invaluable exchange of information across the 12 European countries and in 2013 a first survey of Lamellar patients in Europe (and the US) was conducted. In 2015 Mandy Aldwin succeeded me as President of eni. As Treasurer of the ISG I should emphasise that the charity is not government funded – it is reliant on fundraising and donations. Apart from the money raised, any fundraising demonstrates to would-be grant makers that we are not a charity that expects to be funded by grants, but that we and our supporters make every effort to raise funds on our own account. Please consider pledging a regular donation through our website or request a donation form by simply ringing our helpline 0845 6029202, and help us to improve the lives of all individuals and families affected by ichthyosis. In the 2015 New Year's Honours Maggie's work for those affected by ichthyosis and genetic skin diseases was recognised when she was awarded with an MBE by her Majesty the Queen.
Sue Corbett Secretary Expand Sue stepped down as a Trustee in December 2022 after 13 years of commitment to the Ichthyosis Support Group (ISG) and its members. We would like to sincerely thank Sue for her support dedication and enthusiasm during her time with the ISG and wish her all best wishes for the future. I joined the ISG in 2009. My husband (Andy) and I were out lunching with Maggie and her husband (Mike) in late spring that year. How do I know Maggie? We became firm friends while attending Langley Grammar School and remained so after she married Mike and moved away (I was lucky enough to be a bridesmaid to them). During the meal I asked Maggie about their daughter Mandy and also Maggie’s passion - the ISG. Maggie mentioned that the small charity was ticking along, always struggling with money and now also struggling with the lack of ‘somebody to take the minutes during Trustee meetings’. We parted after lunch, but Maggie’s frustration at needing more support stayed with me. The previous year I had been rather poorly for a few months and Maggie was such a good friend at that time – visiting me in hospital at a time when many in my family couldn’t, and lending me her precious DVDs to watch while I tried to avoid boredom in isolation. So, now fully recovered and finding my way back into life, I decided that it was ‘time to give something back’. I was quite used to taking minutes of meetings as I had previously acted as secretary to our local Scout Group. I offered my help to Maggie and, after she had asked the other Trustees for their approval, I attended my first Trustee meeting in August. At that meeting I discovered a small team of people who were absolutely committed to helping sufferers of ichthyosis and their families. I was hooked! How could I not be? All the people in that meeting either suffered the condition themselves, or were the parent of a child born with the condition. In time I heard their stories – all different - but all stories carrying the same message, that there is not enough awareness of ichthyosis. Every story told me that, at the birth of their child, nobody present recognized the condition and a very scary period in their lives began. All the stories are very moving. So, years on, I still take the minutes – and Andy joins me attending all the Fun Days and Family Conferences where we welcome everyone as we man the reception process. We both love meeting up with, what have become, familiar faces from previous functions and greeting new attendees who quickly find themselves feeling welcome amongst other members of the ichthy family. Andy and I still believe that there is not enough awareness of the condition and will talk about it with friends and family at every given opportunity and help to promote the mission of the ISG whenever possible.
Mandy Aldwin-Easton Co-Founder and Trustee Expand Mandy has Netherton syndrome, and is a member of the Medical Advisory Board and liaises with the pharmaceutical companies. She also cordinates the ISG's marketing material, having input on design and content. In addition Mandy also keeps the website and social media up to date.
Sarah Griffiths-Little Trustee Expand I was born a Collodian baby and was later diagnosed with Lamellar ichthyosis. I became a member of the Ichthyosis Support Group (ISG) in 2011 and did not really give it much thought after that, I received my monthly news letter and Christmas cards but did not think I had much to give the group so I did not get in touch with anyone. Then in October 2012 something changed in me, I can’t explain what, I just thought to myself I would really like to help others with my condition and make new friends so I completed a VOLUNTEER form. I was contacted shortly after that by Chairman Paul Whitehouse. After a lovely chat on the phone Paul invited me to attend the next Trustee meeting. To say I was a little nervous attending the meeting is an understatement! However, when I entered the room and started chatting to everyone I felt like I was sitting down with family. I was asked to go and have a think about whether or not I wanted to still volunteer for the ISG and come back to the next meeting. During the time in between meetings I helped out with a few tasks and loved every minute of it. At the next meeting I became a Trustee and it was one of the most proudest moments of my life. I then attended my first family day at Blenheim Palace in 2013 and was overwhelmed by the whole day. I gained so much information, met so many new friends and did not feel alone any more. This gave me more of a passion to work hard for the ISG and help members get the most out of the group. I work full time but give most of my spare time up helping support the ISG. I love my role within the group and I have high hopes of arranging quite a few new projects in the coming months. Watch this space!
Lee Lancashire Trustee | Treasurer Expand I joined the ISG in October 2017 as a Trustee, taking over the treasurer role from our founder Maggie. My wife and I had attended two of the ISG family days following the birth of our baby boy Alfie in May 2013. Alfie was born with a rare skin condition known as Bullous Ichthyosiform Erythroderma, a form of Ichthyosis. This condition causes the skin to be excessively fragile, and can easily blister and peel. To compensate, the body regenerates skin faster than normal, which then causes a thick build up of skin which can crack. This can be very sore at times and Alfie's care involves a lot of baths, even more greasy creams and sometimes bandages. Despite all of this, Alfie is a VERY happy and intelligent boy, with an extremely cheeky and lovable personality. The family day was so helpful to us, especially in those early days when parents of new babies with Ichthyosis can feel quite alone. We realised that there was support out there, and that our ‘Ichthy-family’ is a wonderful community to turn to.
Ray Rowley Trustee Expand When our oldest daughter was born everything was wonderful, apart from a few rough patches on her skin. However, the following day her skin begin to blister and suddenly starting shedding all over and would not stop – nearly all of her skin from the neck down came off and she was left red all over and looked extremely sore. It was an extremely frightening and very difficult time for my wife and I as we were rushed down to Special Baby Care. We were transferred to Great Ormond Street Hospital whereby it was confirmed that our baby girl had Bullous Ichthyosis (BIE) The Ichthyosis Support Group (ISG) contact, Pamelia was on hand to assist and was invaluable with information and practical advice – my wife and I really appreciated this support in what was a crazy first few months of our little girls life. We soon got into the daily routines of bathing, creaming, special shampoo’s, lotions and also kept a close eye on hydration as my daughter grew fast A couple of years later I managed to run the London Marathon for the ISG as a gesture of my appreciation for their invaluable support. This led to me meeting the trustees and being invited to become a trustee myself. As a voluntary trustee I have met some really wonderful people and enjoyed getting to know them all, we now have an Ichthyosis community where families have made lifelong friends with other Ichthyosis sufferers. Our conferences continue to bring families and individuals together and it is a humbling experience to see how much this means to our members and for them to see how much support and knowledge is available. One of my highlights is always when someone meets another sufferer for the first time ever and realise they are not alone. My daughter is a teenager now and still has a daily skin care routine, lives with her ichthyosis and is healthy, active and very resilient. She has made life-long friends within our ISG community.
Mudassar Ulhaq Trustee / Director Expand I joined the ISG in September 2014 as a Trustee following the Annual ISG family day in Newcastle 2014. My wife and I attended our first ISG conference following the birth of our baby boy, Ibrahim, born in June 2012. After attending the family conference it made us realise that there was greater support out there both from within the ISG but also other members affected with the same condition. It was completely a new experience for us living with Ichthyosis and having attended, by the end of two days I was totally delighted and inspired. Being a part of the ISG is a extremely feel good factor as I desired the opportunity to make a real difference by helping the people who need it most.