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Post by Bronte » 20 Nov 2010 20:26

Following the London Patient Day, I approached David Bayliss regarding his MINI 2 THE ARCTIC project and asked if he could also help to raise awareness and funds for MDS. He had no hesitation, except the proviso that I would need to deal with the fundraising for MDS.

I am a total novice, so that's why I would welcome all suggestions. There is bound to be a wealth of experience out there, expecially to create an effective viral campaign. That makes me sound I.T. literate, quite the contrary, but I certainly recognise the power of the internet, FACEBOOK, TWITTER and U TUBE.

This amazing arctic challenge, starts a week today (27th Nov 2010 ) from the Arden Mini Dealership Aylesford Maidstone at approximately 10am. The press releases are in hand and hopefully on Monday, I can encourage the local TV stations to cover the event. Members of the Kent and Sussex Mini Club have agreed to provide a convoy down to the channel Tunnel, which should provide quite a spectacle.

The MDS Committee kindly invited me to their meeting yesterday, when I had the opportunity to discuss how we could get greater value out of this incredible trip. Firstly, they have agreed to change the logo for my promotion boards, so that they will include "Supporting patients with bone marrow failure" This will help with the words MDS, which mean little to the public at large. I had hoped that we could mail shot all the MDS patients, but this would break all the rules of confidentiality, which I can fully appreciate.

What I want to achieve is that all MDS patients are aware of the UK Patient Support Group, so that they are not in the dark and riding that awful rollercoaster of emotions and feeling of isolation.Then they also will have a choice whether to participate in the online discussion groups, Patient days etc . With an estimated 7,000 patients even a proportion would create the voice that is required, especially when it comes to lobbying for drugs and treatment comparable with other European countries. Hopefully, this will also boost the effectiveness of the discussion forums.

I would like to take this campaign to the next level. So I would be very grateful for help with any of the following as my batteries are running down, probably because I am awake in the early hours thinking of other ideas.

- Publicity is key - press, TV, Radio, any ideas.

- Please could you use all your contacts to spread the word. I have given Sophie an embedded link, where by clicking on the car you can link to the donation page. Excellent for sending via emails, with a message perhaps that this Year you are donating to MDS rather than sending Xmas Cards. Also, my I.T. friend has cleverly designed a the same link for Companies to place on their websites, where they can add a message perhaps "Supporting patients with bone marrow failure" The actual Mini Countryman has now been delivered with fantastic graphics, advertising the charity, so hopefully, I will be able to use an embedded link of the actual vehicle, soon. Let me know if you need these.

- Could everyone on FACEBOOK /Twitter spread the word
- I produced some flyers which were used recently at the Cambridge Patient Day, which are available if your hospital clinic will display / or wherever. (Let me now if reqd)

- Please could you check that the Hospitals have the UK Patient Support Group Newletters, which will in turn advertise the website and will then link to the project.

- Help to find celebrities for the future to raise awareness. I contacted a number of the 71 degrees North - but no luck. Another JK Rowling would be great.

- Free marketing expertise to drive this forward.

- More Companies to host the embedded link, especially in the City
- Advice from veteran fundraisers

- Presence on the day - let me know if you can come along

- A spare £ million !

Now for my THANK YOU's
David and Vikki for being brave enough to take on this challenge and devote a month of their time to help others (The Bayliss family are simply the best and baby Phoebe born last week is gorgeous. David is an Uncle for the first time.

Everyone that has already donated

MINI UK for supplying the MINI COUNTRYMAN

GO GIRL for the fantastic Graphics for the car

Pen and Ink for my leaflets and boards
Friends that understand I.T.
Companies and individuals that have sponsored the trip

Companies for hosting the embedded link
Sophie for her patience

Finally thanks for taking the time to read this, I hope we can pool our skills to make this fundraising event truly successful.

Posts: 614
Joined: 01 Dec 2009 21:52
Location: Essex


Post by chris » 22 Nov 2010 16:49

Dear Bronte

Thanks to you too for doing all this work to help MDS Patients. :D

I sent out an e-mail about Mini 2 to friends and relatives who have been only too happy to help out as they know how important this support group has been to me. I guess between them that they have donated over £400 which is very, very touching for me and an extra and very practical way they can show they care.

I hope that all of you reading this will feel able to spread the word and offer any helpful suggestions to Bronte to support what she is doing and also dip into your pockets a little bit!! Every little helps.

Good Luck with it all

Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex


Post by Bronte » 22 Nov 2010 18:35

Thank you Chris,
I am very grateful your help. Today has been a day for contacting the Press and local TV stations. The Kent Messenger Newspaper Group Maidstone, would be very interested to hear from MDS patients in the local area. I have been in touch with BBC South East and ITV Meridien, so hopefully I will know soon, if they are prepared to cover this event or indeed the wider issue of NICE and Azacitidine.

The Donation Page will be open until the end of the Year, so plenty of time to circulate and for Companies to assist with links

Posts: 249
Joined: 20 Nov 2008 14:05


Post by sophie » 25 Nov 2010 20:51

Fantastic work Jan - a big THANK YOU to you !!!
Would not have been possible without the enormous amount of talking and walking you have done!! And still doing.
And THANK YOU David, Vicky and Jayne.

Please tell David and Vicky we are thinking about them - and hope all goes fantastically well. Wish I could be there to wave good-bye to them.
Can't wait to read about the updates and see some photos.

The funds raised will help loads towards offering support and information to lots more patients and their families.

Thank you all!!
Sophie - Patient Liaison
For any queries:
Call 0207 733 7558

Please do not send me PM messages on this forum - I do not check it often.
This forum is purely for patient to patient communications. Thanks for your help.


Post by Bronte » 27 Nov 2010 17:36

David and Vikki are on there way, you can keep up with their journey on David's live tracker on
BBC Radio South East interviewed Vikki before they set off and we should have some press pix shortly.
They have certainly helped to raise the profile for MDS patients.
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