Trustees Of Lynch Syndrome UK
Hi, I’m Jennifer Martin, I am in my sixties; I have LS but am so far cancer free.
It sounds a little pretentious to say that I am the founder; I think I'm more of a catalyst that brought like minded people together at the right time.
Feeling frustrated at the lack of information and understanding for LS individuals and families, I asked who would help, and six amazing people stepped forward.
We are a handful of dedicated, determined people working hard to reach everyone who has LS, our aim is to dispel fear, give hope and support for generations to come.
Hello, I am Pauline Skarrott, a retired GP. I don't have Lynch syndrome but come from an LS family.
My role in LSUK is to help make information about Lynch syndrome easier to understand.
If everyone with LS knows enough to manage their condition and can access that knowledge easily from websites, leaflets and Facebook then we will be satisfied. At the moment there is still much work to do."
Hi, I’m Tracy and found out about LS after a diagnosis of Bowel Cancer 11 years ago.
I got involved with LSUK because of the lack of information and so many of my family members being diagnosed and passing from LS-related cancers.
I speak to and liaise with medical professionals from all departments to spread awareness and gain contacts for information for all our followers and group members.
I also assist in the design of our leaflets for clinics and patients because as all our other trustees, information and knowledge is essential to staying healthy and being proactive about your healthcare key to leading a long and cancer-free life
I'm Mark. I also decided to get involved with LSUK also due to lack of information available and erratic treatment and screening process of patients with LS throughout the UK.
I was diagnosed with LS (MSH2) and am a long term survivor of two LS cancers.
My main role is designing and maintaining our website and our presence on social media.
I also help out with the day to day running of the charity and happily get involved with writing media for the benefit of LS patients
After my family’s diagnosis of LS and my brother, mother and myself going through cancer treatment, I searched online for support and information.
I was stalked by Mark from a bowel cancer site and have not looked back. I am so passionate about awareness that when asked if I would like to join the LS committee I did not hesitate and was overjoyed to become a Trustee.
Between us, we can prevent other families going through what mine and many others have and save lives.
I am extremely proud to be a part of LSUK and am very grateful for all the support and advice I have gained since joining, not to mention the lifelong Lynchie family I have now gained.
Before diagnosis and on getting my LS diagnosis I was unable to find any up to date or what I felt was relevant information for me to understand what LS would mean for me and my son and Grandson.
I was amazed that there was so little to be found about LS on the big world wide web. There was a link on the LSI website that lead me to the tiny LS Facebook group that seemed to have some nuggets of information.
Then along came Jennifer calling us to help her to get more info, more awareness and hopefully become a charity.
Along with Helen I do merchandise and whatever I can. I became a trustee because our families need us to get GPs, surgeons and all healthcare providers to realize LS is more than an early Bowel Cancer and with knowledge we can be aware and ahead of cancers with screening.
Hi, I'm an MSH2 Lynchie. I was diagnosed with endometrial cancer after a routine hysterectomy, I've now been cancer free for 11 years.
I started putting all the jigsaw pieces of family history together and was diagnosed with HNPCC in 2005 (now known as lynch syndrome)
I am 1 of 8 children, Lynch Syndrome is 50/50 in my family, 4 of us have it, 4dont !!!! Out of the 4 of us who are Lynchies 1 sister hasn't had cancer. 1 sister has had multiple cancers. Me and then, sadly my youngest sister passed away aged 43.
Out of all of my siblings, I am the only one to pass the gene onto my daughter.
I searched for many years for information and help on the Internet and didn't find anything really relevant. So, I am very pleased to be part of Lynch Syndrome here in the UK, to help other people, to get 'the word' out there, to raise awareness and to help others in any way I can.