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Fall 1999 Volume 3, Issue 6:
IMF (UK) Update
New Amyloid Information

IMF (UK) has produced two new information booklets about AL Amyloidosis, a bone marrow disorder related to myeloma. About 10-15% of myeloma patients have co-existing AL Amyloidosis. "AL Amyloidosis: an Introduction" and "AL Amyloidosis: the Basics" are available free of charge. Please call 0800 980 3332 if you would like a copy of these booklets.

Dublin Seminar Postponed

The IMF (UK) Patient & Family Seminar planned for Dublin must be postponed. We are trying to secure alternative funding sources and are confident the seminar will take place before the end of the year. IMF (UK) would like to apologize for any inconvenience and hopes it will be visiting the Republic of Ireland very soon.

UK Myeloma Today

After much discussion with readers, patients, doctors, and the IMF Boards, it has been decided that a UK supplement will be enclosed with each issue of Myeloma Today. The IMF (UK) felt that a supplement dedicated to UK news and updates would be useful. It will include profiles of patients and healthcare professionals, local fundraising news, readers’ letters, NHS news, practical help and details of upcoming events. The IMF (UK) hopes to have its first supplement ready for the winter issue. If you have any interesting news or stories which could be included in one of the editions, please contact Christy Browne, 0800 980 3332.

Eric Low accepting Website sponsorship from Andrew Walton

IMF (UK) Website Sponsorship

For the second year, the IMF (UK) received sponsorship for their Website. Andrew Waiton of Boehringer Ingleheim presented a cheque for £7,000 to Executive Director Eric Low at the recent Manchester Clinical Conference. The Website, which has become a vital form of communication, receives an average of 54 visits a day. An increasing amount of new members are reaching the IMF and gaining access to vital information through this medium.

First Annual National Myeloma Awareness Day Report

by Susan Hamilton

June 21, 1999 saw the first annual IMF (UK) National Myeloma Awareness Day. Planned to coincide with the "European Week Against Leukaemia, Lymphoma and Myeloma", this event was designed to improve awareness of myeloma in the UK and raise vital research funds. The event was a huge success: total funds raised to date amount to over £25,000 with donations still coming.

Prior to the event, IMF (UK) distributed over 200 Awareness Day Action Packs, from Aberdeen to Cornwall, encouraging IMFers to display posters, contact local press and organize fund-raising events. As June 21st is the longest day of the year, more sunlit hours meant more fund-raising hours, and our members put the extra daylight to good use!

Josie Dobrin organized an evening of laughter at The Comedy Store in London. Josie and her team once again achieved a momentous fund-raising feat and proved that laughter really is the best medicine. Some of Britain’s top television personalities and acts kept the 400-strong audience enthralled. A grand total of £15,000 was raised.

Shirley Burchell of Maple Cross in Hertfordshire and her husband took on the challenge of a sponsored walk. Their inspiration for the walk came from thoughts of a time when things were not so good. After Shirley’s stem cell transplant, she could only manage a few steps at a time with the support of her husband. A year on Shirley’s five mile walk raised £1,600. Her husband raised an additional £200 at his work, for a grand total of £1,800.

The Myeloma Golf Classic, organized by Kevin Gleeson, a dynamic young patient, raised £2000 with the help of Aer Lingus. This event is to become a yearly fixture on the IMF (UK) fundraising calendar. Jan Cuff sponsored a “stay awake”. Jean Surplice sponsored aerobics. Musical events, raffles, coffee mornings, evenings out and a golf tournament were also held.

Proving that the pen is indeed mightier than the sword, many IMFers, including Eddie Cooper of the Finchley Area Support Group in London, began donation chain letters or wrote to large companies asking for their support. A new donation has arrived at the IMF (UK) office nearly every day as a result of this simple fund-raising method.

Splashes of the maroon IMF (UK) Awareness Day poster have appeared on the walls of Doctors surgeries, community centres, and supermarkets. Local newspapers carried articles on fundraising events and editorial reports on personal battles with myeloma of Tony Hampson and Bertram Nelson. Many supporters simply stood on busy streets and sold stickers. This increase in publicity has begun a ripple effect that will wash over the whole country.

The IMF (UK) would like to extend a warm thank you to everybody who involved themselves in this day. Without such support, the Awareness Day could not have been a success. Raising the profile of myeloma requires team work – throughout the country and, indeed, the world. Such team work was seen in abundance on June 21, 1999. Myeloma awareness is moving from the confines of the medical profession and the myeloma community into the public domain. We hope you will join us next year to build on this success.

Manchester Seminar And Clinical Conference

The IMF (UK) held their first Clinical Conference on June 25, 1999, as the “European Week Against Leukaemia, Lymphoma and Myeloma” came to a close. The Christie Hospital in Manchester joined forces with IMF (UK) to welcome experts from the US, Europe and Britain. Doctors, nurses and healthcare professionals from around the UK were invited to attend this one day clinical symposium focusing on the disease biology, accomplishments of recent years and global trends to combat myeloma.

This meeting was made possible by sponsorship from 11 pharmaceutical companies and the receipt of an educational grant from the British Society of Haematology.

Manchester was also the site of another IMF (UK) Patient & Family Seminar of 1999. More than 200 attendees had the opportunity to learn from experts from around the globe about myeloma, treatment strategies and research developments. The meeting began with an introduction from Eric Low of the IMF (UK) and Prof. Howie Scarffe of The Christie Hospital. Prof. Brian G.M. Durie from the US played a pivotal role, discussing current approaches in treatment and bisphosphonates. Transplan-tation and the UK Myeloma Forum were covered by Dr. Steve Schey from Guy’s Hospital, London. Dr. Raymond Comenzo from the US discussed Amyloidosis. Nurse Tracy King from Hammersmith Hospital, London covered the subject of patient empowerment. Dr. Joan Blade from Barcelona, Spain presented an informative talk on common complications and renal disease.

After each talk, attendees posed questions pertaining to their individual treatments and quality of life issues. Doctors and patients alike gained from the opportunity to share their experiences.

The IMF (UK) would like to thank Novartis Pharmaceuticals for the unrestricted educational grant which funded this meeting. The foundation would also like to thank all those who attended and made this a successful meeting.

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