Who is the Proteus Family Network UK?
We have been supporting families for 21 years. The group was originally set up by two Mums who had children living with Proteus Syndrome and Klippel Trenaunay. They set it up because at that time there was no support available for people living with these conditions. Slowly but surely the group grew, as more families heard about us and sought us out. The name of Proteus Family Network UK was adopted because the KT side of the group operated independently, with the two groups coming together at family get together days. In 2001 we became a registered charity and adopted our constitution.
Eventually the KT group could no longer carry on and we were increasingly getting contact from KT families looking for support. So we amended our Constitution to formally include KT support, although we were still called the Proteus Family Network, we are actually the Proteus and Klippel Trenaunay Family Network!
Note you will often see the abbreviation PFNUK used, this saves a lot of repetitive typing!
Today, due to huge advances in research and findings in genetic research into overgrowth conditions, it is realised that even within KT there are different genes affected,which will change diagnosis and future treatment. So, to ensure all conditions are included, a new term has evolved “Segmental Overgrowth Conditions”.
Although we will not be changing our name at the moment please be assured that we do welcome enquiries from and offer support and membership to, anyone who is living with a segmental overgrowth condition, whether that be diagnosed as Proteus Syndrome, Klippel Trenauanay Syndrome, Hemi-hypertrophy, or an undiagnosed overgrowth condition.
Why are we called the Proteus Family Network UK?
When the group was first set up it was recognised that one of the best forms of support was to be able to talk to someone else who was going through the same thing as yourself. So, it was decided to put families in touch with one another and establish a Family Network.
This idea has continued throughout and new members receive a Family Directory, a small booklet containing the names and contact details of those members who are happy to be contacted by others with the aim of providing support between each other. The Directory currently holds the details of over sixty families in the UK and abroad who are happy to be contacted. There is a choice of whether to be included in the Directory or not, either way every member receives a copy of the Directory.
We presently have well over a hundred members, living both in the UK and abroad, the vast majority being diagnosed as KT. We have welcomed newly diagnosed as young as a few months, to adults who have lived with their condition for many years, some into their fifties and sixties without any support or treatment and who are so relieved to be put in contact with others living the same experiences.
Who knows there may be someone living in your town who would love a chat!
What do we offer?
- We offer a telephone support line, available 9.00-9.00, 365 days a year. Being able to chat with someone else who understands is one of the most important services we can offer. I know from my own experience, the relief felt when our local paediatrician, who had seen the condition once in her thirty odd years of medical practice, put us in contact with another family, with whom we chatted and eventually met when our son was a few months old. Being able to chat with someone who understood, whose child was then a teenager, brought a mixture of relief, support, comfort and much needed hope. We have never forgotten that and probably the family does not realise what their willingness to chat and visit, meant to us and that is also what we regularly hear from those who pick up the phone and call the support line this support is one of the most important we can offer.
- We host family weekend get together’s every other year the next one will be in 2017. There are usually around 16-20 families who join us, some coming from as far afield as Sweden and, last time, Hungary! Click here for upcoming news of our next Family Weekend and memories of past get together’s.
- We welcome applications for grants for specialist equipment/ clothing.
- We provide short booklets briefly explaining the two main conditions of Proteus and KT, which can be helpful to give out to other professionals who may involved in your care and who may not be familiar with the conditions.
- We provide a Glossary of medical terminology click here to help guide you through some of the specialist and often confusing medical terminology you will come across.
- We issue Newsletters with details of research, events and PFNUK news Click here for recent Newsletters.
- We can put you in touch with other families in similar circumstances.
- We support ongoing research into the causes of overgrowth conditions.
Our Medical Board has been established for many years and had grown and evolved over the years in response to changing needs. It has been supported from the outset by Consultants from Gt Ormond St Hospital for Children in London. We were delighted to have been party to the bringing about of the specialist overgrowth clinics at GOSH which replaced the vascular malformation clinics for those living with an overgrowth condition and enabled families to see all specialities needed in one multi-disciplinary appointment.
Our Medical board is now supported by Medical Professionals from GOSH, the Royal Free Hospital in Hampstead, The Institute of Child Health in London (Research) and Addenbrooke’s Hospital in Cambridge(Research).
We have a small committee-chair, treasurer, secretary, fundraising coordinator and a general member. Our Medical Advisory Board is supported by consultants from Great Ormond Street Hospital, the Royal free hospital at Hempstead and Addenbrooke’s Hospital in Cambridge.
We have been registered with the Charity Commission since 1997, No. 1098608, are affiliated with Contact a Family, NHS Direct and are a member of Rare Disease UK.
We also work in cooperation with support groups of associated conditions and are in contact with families across Europe. We host a members only Facebook page and open public Facebook page.
Our family weekends are held every other year and offer a time to chat with other families, hear about the latest research and meet medical professionals and the members of the medical board often on a one-to-one basis. Families joining us for the first time often say it is a positive and welcome opportunity to meet others and help us all realise that we are not alone in living with such rare and complex conditions.
Join us at our next weekend get together-we would love to meet you!
And this is your committee…
Hi, my name is Jean Harrison and I am the Chair and a trustee of PFNUK. I have been a member of the support group since my son, who lives with Proteus Syndrome, was born in 1993 and am Chair of our committee. I also host the telephone support line “01786 661263” which is available 9.00 – 9.00 365 days a year.
Hi, my name is Sarah Gardiner and I am a Trustee and Treasurer of PDNUK. I have been a member of the support group since my daughter was born in 1997.
Hi my name is Sarah Rogers and I am a Trustee and committee member of PFNUK. I have a son, born in 2011, who lives with KT.
Kathy Corcoran specialises is a committee member and focuses on fundraising for the group.
Our Medical Board
Our Medical Board is supported by Consultants and specialised nurses from Great Ormond St Hospital for children in London, the Royal Free Hospital in Hampstead, Research specialists from the ICH – Institute of Child Health – in London and Addenbrookes Hospital in Cambridge. Click here for more details.