Author Archives: admin

Joanna Cardwell-Fox

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Yellow CMV

Today, we learnt the sad news that our team member and dear friend Joanna had lost her fight with bowel cancer after battling Crohn’s for 30 years. Joanna was a true hero to the end, always positive, always looking for the best in every situation. She had an immense talent for graphical design and made a huge contribution to this website and the Crohn’s MAP Vaccine cause. A few weeks ago when we knew she was gravely ill, the team wrote tributes to Jo letting her know how special she was. Through those words, it was clear that she was a caring, kind, creative and fun person who prioritised the right things in life. Jo coined the phrase that defines the CMV campaign “I want to be cured, not managed” and produced countless brilliant graphics for CMV.

Jo, Cured not Managed

Jo recently married Steve, her long term partner of 25 years, who survives her along with her dog Tilly. She will be missed by all of us, but never forgotten. Before she died, we promised her that we would continue the fight to cure Crohn’s until it was won and that one day we would toast her name when patients finally will say, I will be cured, not managed.

Love from all at CMV

Joanna requested that people who would like to remember her, make a donation, rather than send flowers

How YOU can help in 2016!

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  • Like, share and tweet CMV posts so your friends get to know about it too. If you don’t already follow us on Twitter, please do. We are @CrohnsVaccine.
  • If you are a member of IBD related Facebook groups and forums let them know about the vaccine.
  • Tell your friends and relatives about CMV
  • Raise the issue of MAP and the connection with Crohn’s with your Gastroenterologist. Give them the latest literature if they are sceptical, many will be as they won’t be up to date.
  • Ask your local GP’s surgery if you can leave CMV literature there. You can download it here: http://cmv.com/media1/ There are versions in other languages too!
  • Ask if you can leave a collecting tin at your local shop (s). We can help you with this – it’s easy!
  • Check out local up-coming fayres and events in your local paper and contact the organiser to ask if you can put a collecting tin there or have a raffle at the venue for CMV.
  • Display a car sticker or circular ‘tax disc replacement’ with the CMV logo – contact us for details .
  • Write to your MP and ask for support from the government for MAP research
  • Write to local newspapers or magazines. Even a simple letter published on the Letters page is helpful.
  • Have a clear out of the attic or garage and sell off old stuff you no longer need and donate the money for CMV.
  • Set up a Just Giving or Crowdrise account, tell your story and set a personal target. Promote it on the Heroes page.
  • Organise a fundraising event to raise money for CMV.

And don’t hesitate to ask us for help. We are ready to help in whatever you decide to do!

Happy fundraising and vaccine awareness raising!

Testing Begins on the Volunteer Team

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Today marks a significant milestone for the Crohn’s MAP Vaccine project. First though, we would like to say a huge thank-you to all of the supporters who have given their time and donated money and to all of the Heroes who have become an integral part of the fund raising team. Without your help and dedication there would be no MAP Test and no progress towards trialling the Crohn’s MAP Vaccine. Every one of you has played a part in getting the project to this stage. Now, we have the chance to show you what goes on behind the scenes, where some of that money has been spent and how this is making a real difference.

Getting Tested

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Today I was lucky to be at the front of the queue when testing began on the core team of supporters and CMV Heroes. I am fortunate that my wife is a doctor, so she was able to take a sample of my blood at home this morning. After the usual morning routine of dropping the kids at school I headed up to Waterloo to King’s College London to hand over my fresh samples to Prof John Hermon-Taylor. It’s over a year since I last visited the lab, so it was great to see progress and meet the lab technician who would be running the tests. Looking round the lab made me late for work, but it was worth it.

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Earlier in the year, the flow cytometer, an essential part of the MAP blood test, broke down and could not be repaired. A replacement was needed and after digging deep, the funds were raised, potential new machines were evaluated and a new machine from Beckman Coulter was purchased. Technology moves forward quickly and in the ten years since the previous flow cytometer was purchased, many things have improved. This is great news for the MAP blood test as results are now being seen with greater detail and accuracy than ever before. The new machine also can be simply upgraded to add, for example, new laser “colours”, so there is potential for further enhancements.

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Now, I await my results. In the coming weeks more members of the team will be tested, so stay posted for further updates.

Testing the MAP Test

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Starting in the next few weeks, we enter an exciting new phase of the development of the MAP Test. Now it’s time to put the MAP Test to the test and we will be doing so with the help of The GP Surgery in Wimbledon.

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‘We would like to say a huge THANK YOU to The GP Surgery in Wimbledon who have offered us the free use of their wonderful facilities for MAP blood testing as we move into the clinical phase of research. 2 slots will be available for MAP blood testing each Tuesday, initially by invitation only -we will be offering the test first of all to our fundraising Heroes as without their hard work and support, none of this would be possible. However, we hope to be able to extend the invitation to anyone who would like to be tested by early next year.

Dr Amy Hermon-Taylor, who works at The GP surgery, had this to say about the practice:
I’m very grateful to The GP Surgery for supporting this important research project. I joined the TGPS team in May 2015 and have found it a fantastic place to work. All of my colleagues are excellent and caring GPs who I would have no hesitation in recommending to a friend or family member. We all believe in (and work within) the NHS but we recognise that it’s going through a tough time at the moment. The concept of high quality, low-cost private healthcare is a novel one and much needed to alleviate the burden on the NHS.’

Donate And Help Put An End To More Appointments

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Had an appointment? DONATE!

MAP Associated Disease

With the number of hospital and GP appointments we all have to attend, whether for routine consultations or procedures such as colonoscopy, endoscopy or surgery, imagine how much we could make for the Crohn’s MAP Vaccine if we had to pay a £2 forfeit for every appointment. Well, that is exactly what we started to do at the end of September – and we have already raised more than £200 from this one initiative!

Multiple Sclerosis, Parkinson’s, Type 1 Diabetes, Ankylosing Spondylitis, Systemic Lupus Erythematosus, Hashimoto’s Thyroiditis, Rheumatoid Arthritis, Psoriasis, Irritable Bowel Syndrome and Sarcoidosis. The list goes on. Mycobacterium Avium subspecies Paratuberculosis (MAP) has been implicated in all these diseases and the evidence for this association is increasing. So, there are a plethora of good reasons for donating to this new Just Giving page. Why not take a look and join in next time you have an appointment?

Crohn's: how we fight the disease with Amy Hermon-Taylor and Jennifer Klobassa

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Today Dr Amy Hermon-Taylor along with Crohn’s MAP Vaccine supporter Jenny Klobassa featured on “Strategies of Success” with Brian Cohen. You can hear the full interview online here: Crohn’s how we fight the disease with Amy Hermon-Taylor and Jennifer Klobassa.

Dr. Amy Hermon-Taylor grew up not with Crohn’s but with a father that has been working on a cure for Crohn’s, She began to undertand he father’s research properly in light of her medical training, taking the decision to get personally involved with fundraising/awareness campaigning… and building a team of people from the Crohn’s community (across 3 continents)who are working together to support the research that could lead to a Crohn’s cure.

One person that is accutely aware of this research is Jennifer Klobassa. Jenny has Crohn’s and is member of this team, a Crohn’s patient from Minneapolis,will talk about her experience with anti-MAP antibiotic therapy (AMAT). She contacted Amy’s father in 2008 having read several of his scientific papers and he gave her some advice about AMAT. As a result of this treatment, she has been in profound remission from her Crohn’s for the last 6 years. She is now helping to fundraise for us by organising a benefit in April 2015.

With Dr. Hermon Taylor in England, Jenny in Minneapolis and I am in New York we are thousands of miles apart but with one goal, to further the idea that a cure can be found.