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March 2013, Issue 1

Registered Charity Number: 1145382

To the first ejournal Editorial Submissions Contributions to the journal are welcome. If you have a story, article or letter please email Mitrofanoff Support at

Advertising Enquiries Please email

Content CEO Article – Kyla Rogers Product advertisement - Hollister

Charity sponsors Key Sponsors

Fundraiser Article – Sarah Kitchener Fundraising – Have fun, get involved First Anniversary Celebration / Fundraiser Changes within the charity Patient Education Day – 23rd March 2013 Other news Product advertisement – Teleflex Travel Insurance – Free Sprit 2

Silver Sponsors

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Chief Executive/Founder – Mrs Kyla Rogers I founded Mitrofanoff Support in early 2010 with the intention of trying to help a couple of friends who were going through similar issues with the Mitrofanoff procedure. It became apparent very quickly how much need there was for a support network of this nature for people with this condition and their families.

develop the charity, provide a service and help to create awareness of the Mitrofanoff procedure and the charity.

The Board of Trustees have quarterly meetings to discuss all matters within the charity, to ensure all board members are helping the charity’s aims, adhering to their posts, discussing matters arising, I worked as a Dental Care financial details, arrange Professional in Dorset for 10 events and rectify any issues if Four coffee mornings will also years. However, as Mitrofanoff start to take place this year in Support started to grow, I found any have arisen. different parts of the country to the demands on my time Mitrofanoff Support provides enable people to meet in a became ever greater. While emotional support, more relaxed atmosphere. starting to work with urological reassurance, information and medical professionals and Quote from member networking to those affected urology manufacturers, I made directly or indirectly by the the decision to leave work in “Through the charity I have met procedure. October 2011,and to run the lots of others with Mitrofanoff’s organisation on a full time basis. The membership is free of and realise I am not alone and charge and we currently have have gained a lot more confidence”. in excess of 470 registered members who have the Home life procedure themselves, are a family member or carer. I live in Bournemouth, Dorset with my husband who I The charity holds two Patient married in September 2011. I Education Days a year for it’s enjoy socializing, cooking, members, and anybody who going to the cinema and long may require a Mitrofanoff, walks with our lively three along with medical year old, boxer dog. professionals. The day allows On the 11th January 2012 people to gain information Mitrofanoff Support became a directly from medical registered charity. I appointed professionals, meet the three trustees to The Board and manufacturing companies and was delighted when Dan Wood, see what products are Urologist at UCLH, agreed to be available to them. Most the Charity’s Patron. importantly they share experiences and find they are The Board of Trustees help to not alone. 3


Fundraiser – Mrs Sarah Kitchener

Originally from Lancashire, I now live in Hertfordshire, with my husband, who I married in May 2012. I have worked in the NHS, as an administrator, for 4 years. I was born with congenital urological issues including a neobladder. I had my first operation in Leeds when I was 3 months old. My care was then transferred to Great Ormond Street Hospital in London. After many subsequent operations it was decided, at the age of 13, that my right kidney would be removed. During the surgery there were a few problems causing doctors to diagnose me with Arterial Fibrillation.

Without the support of my family I would not have got through my problems and be the strong person I am today. I am very proud to be a part of the Mitrofanoff Support team and be able to give people the support and advice they need. It is also nice to share my experiences with others, as it makes you realize that you are not alone in the world.

In 2002 the consultant and my mother made the decision to enlarge my bladder using a section of my bowel, meaning I had to have the Mitrofanoff procedure too. At 17 this was very difficult to accept but I knew it needed to be done. It was also made much better by Trevor McDonald coming to visit me after the operation! I was then transferred to the care of a Consultant at St James Hospital, Leeds where I suffered a totally blocked ureter in 2007. After much reconstructive surgery my ureter is now working efficiently and well. I am currently under the care of Addenbrookes Hospital in Cambribge and after a recent procedure I have been told my Mitrofanoff and bladder are looking fantastic, which was amazing news to hear. 5


Fundraising – Have fun, get involved There are many different ways to get involved with the fundraising aspect of Mitrofanoff Support…….. Here are just a few ideas: Hosting Wine and Cheese Evenings

Themed Nights – to include fancy dress, disco, raffle and lots of fun

Sponsored Events e.g. Runs, Walks, Cycle Rides etc

Car Boot Sales/Market Stalls

Seasonal Events – e.g. Easter Egg Hunts, Christmas Present Wrapping

Cake Sales

Coffee and Cake Mornings

Asking/Working with local groups e.g. Scouts, Air Cadets, Schools

Bag Packing at local shops/super markets

Car Wash

If there are any local fetes within your area please let us know, we can set up a stall to raise awareness and funds. If you have any other ideas on how to fundraise or would like to get involved, please contact Sarah Kitchener. or 07772 867942 6


First Anniversary Celebration / Fundraiser The Old Thorns Manor Hotel, Liphook, Hampshire. Saturday 2 February 2013 Mitrofanoff Support hosted a First Anniversary / Fundraiser dinner, dance and charity auction at a stunning venue. The evening was attended by 120 people who helped us enjoy the evening. Our guests ranged from charity members, their families and friends, medical professionals and urology manufacturing companies. Everyone looked fabulous and had a fantastic evening. Thank you to everyone who came and made the evening so much fun. This was the charity’s first major fundraising event, so we were thrilled with the final result raising over £7000. Thank you to all those who supported the evening, whether it was by joining us on the evening, generously donating raffle and auction prizes or giving up your time and services for this worthy cause. We could not have done it without your support. Special thanks go to Hollister who sponsored the event and to all the other companies who attended.

2014 Charity Ball Due to the success and feedback from people who attended the evening, we shall be holding an annual ball. Plans are already underway for next year so please check the website for further details. Picture above: Members of Mitrofanoff Support Lisa Morrell and Jamie Shannon who have formed true friendship. Right: Heads & Tails game finalists. 7


Changes within the charity UPDATE: Natalie Sloan has now also taken on the post as Chair as well as Secretary to Mitrofanoff Support Kenneth Edwards – Vice Chair / Trustee Mitrofanoff Support is delighted to welcome Ken to The Board of Trustees as Vice Chair. Ken has been involved with civic and voluntary affairs for a number of years, serving on and chairing many committees. He is also vice president of the local MS branch having purchased an ambulance/bus during his many years as Mayor of Salisbury. Ken is also chairman of the Wessex Stoma Support Group. Ken is passionate about the Mitrofanoff procedure, although knowing the complications as well as the advantages. Email –

Sarah Kitchener – Fundraiser / Trustee Sarah joined The Board of Trustees at Mitrofanoff Support earlier this month and the committee are very excited. Sarah is an administrator for the NHS in Hertfordshire. She also volunteers as a Civilian Instructor with the 2065 (Biggleswade) Air Cadet Squadron. Sarah is very keen to listen to other ideas with regards to fundraising so please feel free to contact her. Email –

Katie Dutton – Patient Ambassador Katie is a trusted member of Mitrofanoff Support and has been involved with the charity from the very beginning. Katie had the Mitrofanoff procedure in 2011, after living with acute urinary tract infections and urinary retention in recent years. Katie now spends her spare time trying to do as much for the charity as possible. She is extremely passionate about Mitrofanoff Support and feels it is her role to support new members that come to the group. Email –



Other news Paul Mitrofanoff In mid February 2013 The Board of Mitrofanoff Support was delighted and honoured to have been contacted by Paul Mitrofanoff after he was surfing the internet and was pleasantly surprised to find the organisation. Paul Mitrofanoff invented the Mitrofanoff procedure in 1976 in Paris, France. Paul ceased practicing surgery in 2000 and has since been enjoying retirement with his family at his home just outside of Paris.

“Allow me to congratulate you for launching this worthwhile initiative to represent the interests of people living with a Mitrofanoff and to raise greater awareness on the subject. I encourage you to pursue your valuable efforts and wish you continued success.”

Joining us in September….. Although Paul is happily retired, he has agreed to come to England in September to our Patient Education Day. He is also happy to answer some questions but primarily this will be an informal session. We are very much looking forward to having him attend one of our events and hope you can join us. Unfortunately we are postponing our northern event until March 2014. We are sorry for any inconvenience but hope you understand.

Upcoming events, this year (check the website for details) Patient Education Day, Oxford - Saturday 23rd March Coffee morning – Saturday 6th April Coffee morning – Saturday 7th September

Mitrofanoff Support relies on donations to continue. Please give generously through the website or . Your donations help to change peoples lives. 10

Patient Education Day, London– Saturday 28th September Coffee morning – Saturday 2nd November


Planning on going on holiday?

Specialist travel insurance for people with medical conditions Mitrofanoff Support  have  teamed  up  with  Free  Spirit  to  provide  Members  with  a  specialist  travel  insurance  policy  which  covers   medical  conditions  which  lead  to  the  Mitrofanoff  procedure. Key features of Free Spirit For  people  of  ALL  ages ü

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Choice of  cover  options  


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Free  Spirit  has  a  dedicated  UK  based  customer   service  team  to  answer  any  questions  and  deal  with   your  enquiries.  Opening  hours  are  8am  -­‐  6pm   Monday  to  Friday  (closed  Bank  Holidays)  and  your   call  will  be  treated  with  the  utmost  confidentiality.       Please  note,  when  you  telephone  or  visit  the   website  you  will  be  dealing  with  Free  Spirit.  

Travel insurance  is  provided  through  Free  Spirit.    Terms  and  conditions  apply.       Free  Spirit  is  a  trading  name  of  travel  insurance  specialists  P  J  Hayman  &  Company  Limited  who  are  authorised  and  regulated  by   the  Financial  Services  A uthority  (FSA  register  number  497103).  Registered  office:  Stansted  House,  Rowlands   Castle,  Hampshire  PO9  6DX.  Registered  in  England  No.  2534965.  


Mitrofanoff Support Issue 1  

Welcome to the first Mitrofanoff Support journal! This has the latest news and updates from Mitrofanoff Support.

Mitrofanoff Support Issue 1  

Welcome to the first Mitrofanoff Support journal! This has the latest news and updates from Mitrofanoff Support.