Myeloproliferative Disorders Support
The forum will be held on Monday 21st May, 6 – 9 pm, in the Governors’ Hall, St Thomas’ Hospital, Westminster Bridge Road, London, SE1 7EH.
If you would like to attend please email info@mpdvoice.org.uk, you are welcome to bring your family and friends. Further information, including travel directions, are available here ….
The forum will be held on Thursday 17th May in The Postgraduate Lecture Theatre, Belfast City Hospital, Lisburn Road, Belfast, BT9 7AB. Registration and coffee is from 6 pm, the forum starts at 6.30 pm and will end at approximately 9 pm. If you would like to attend the forum please email info@mpdvoice.org.uk, or telephone 02890263733. You are welcome to bring your family and friends with you.
More information, including map and directions are available here…..
The London Nightrider
This charity bike ride has one big difference… it’s at night!
Taking place on Saturday 9th June 2012 this is an exciting 100 km (approx 62 miles) moonlit cycle ride past London’s most famous landmarks: Tower Bridge, London Zoo, the British Museum, the London Eye, the Houses of Parliament, the Royal Albert Hall, and more… We’re recruiting 75 riders to take on this unique charity event in the 2012 Olympic year. Register now to grab your opportunity to cycle in the capital as the city sleeps.
The route will be on roads for ease of access and quality of lighting. It will be clearly signposted so you can cycle at your own pace. Full support and back up will be provided.
Location: Central London
Website: nightrider.org.uk
Registration: Register online now!
Our places cost just £39, and we ask you to raise at least £175 sponsorship. We can support you with your fundraising. For more information, please contact fundraising@mpdvoice.org.uk. Once we know you have a place, we’ll send your fundraising guide and sponsorship forms.
Join us on Saturday 16th June for the ultimate challenge. In partnership with Skyline Events, we have 100 places for supporters to make a 10,000 ft tandem sky-dive to raise funds for MPD Voice. No experience required and if you raise the minimum amount of sponsorship off-line you can jump for free.
Date: Saturday 16th June 2012
Location: Maidstone Airfield, Kent
Website: skylineparachuting.co.uk
What’s it like?
You’re standing at the edge of an open doorway in an aircraft flying at 10,000 feet – the noise of the engines rings in your ears and the wind stings your face. You lean out of the doorway and let go. You fall into the clouds at 120 mph. As the canopy opens you begin a tranquil descent from a mile up in the air, steering yourself back down to the centre of the drop zone below. The tandem sky-dive involves falling through the air for several thousand feet before the parachute is deployed. You will be harnessed to a professional parachute instructor at all times throughout the descent. The jump and training are completed in one day and your instructor will control your landing.
Points to Remember:
Sound like fun? Then join us on 16th June 2012, or if that date/location does not suit you don’t worry, there are many locations around the UK to suit all sky-divers. Contact fundraising@mpdvoice.org.uk to find a suitable date or airfield.
Abseiling 100 feet down the front of the Golden Jubilee Wing will provide you with an unbelievable experience, which you will never forget…and all for a great cause. We are offering you the opportunity to do something amazing to raise much needed funds for MPD Voice.
Date: Sunday 1st July 2012
Location: King’s College Hospital, Golden Jubilee Wing
Reserve your place: Contact us now for a registration form
Deposit: £25 per person, or £50 for a group of three
Minimum Fundraising Target: £100 per person
This promises to be an adrenaline filled experience, as you learn how to abseil outdoors. No previous experience is required as our fully trained instructors will take you through everything you need to know. Friends and family are very welcome to come along on the day and watch you from the ground, and you will have the chance to purchase an official photograph after your descent.
Love cycling? Then join us as we ride from South London to Brighton in order to raise money for MPD Voice! We will be riding through Mitcham, Carshalton, Chipstead, Banstead, Haywards Heath and finally Brighton, having completed 54 miles.
We’re looking for people to take part – no previous experience is required. The spirit of the event is taking part not winning, so pedal at your own pace. It’s not a race, it’s for charity.
Date: Sunday 16th September 2012
Location: Central London to Brighton
Distance: 54 miles
Terrain: Road
Website: www.doitforcharity.com
Deposit: £25
Minimum Sponsorship Level: £100
Register: If you want take part in this great cycling challenge please contact us at fundraising@mpdvoice.org.uk and we’ll send you an application form and a fundraising pack. Alternatively you can register on-line through DoItForCharity who will let us know you’ve signed up.
Two patients with myelofibrosis tell how they fought back against the odds. These amazing stories were published in the Mediaplanet supplement distributed with the Independent newspaper.
Read how Tim and Penny both fought back against MF, in Tim’s case, a bone marrow transplant and Penny who trialled a new drug, Ruxolitinib, and how the support of their families helped them through it all.
JAK Inhibition with Ruxolitinib versus Best Available Therapy for Myelofibrosis
Abstract from the journal regarding the study undertaken by leading MPD physicians into the treatment options for myelofibrosis, evaluating the efficacy and safety of Ruxolitinib compared with the best available therapy, in patients with myelofibrosis.
Please join us for a Holistic Fair on Sunday 15 April 2012,
12 noon to 5 pm, raising funds for MPD Voice, entry fee £3 per person. This event has been organized by D & D Psychic Events www.ddpsychicevents.co.uk and will be held at:
The Traveller’s Rest
Kenton Road
Harrow HA3 8AT
The event will offer:
MPD Voice recently held a Living with MPDs Day where patients, their families and friends were able to listen to and benefit from a concentrated wealth of knowledge from the leading experts in the field of MPDs. Alisia O’Sullivan, an ET patient, shares her experience of the day here.
All the healthcare professionals who attended and spoke on the day also held a ‘Myeloproliferative Neoplasms Advances Day’ on Friday 18th November 2011, where they presented and discussed the current trial findings and advances in the diagnosis and management of MPDs. All the healthcare professionals have all very kindly given MPD Voice permission to publish their presentations from this day and the Living with MPDs Day on our website, to view the presentations follow the links in Alisia’s write up.