Firstly, LAM Action is a self-help group to provide support and encouragement for patients with LAM. We do this in a number of ways which are described below. Its second purpose is to raise money. This is discussed later on.
Patient-to-Patient & Family-to-Family Contact
Newly diagnosed patients can be put in contact with patients who will share experiences on a one to one basis either by phone, letter or email. This service has recently been expanded so that patients' family members can correspond with people in a similar situation. If you would like to use this support mechanism, please contact Jan Johnson (see Contact Us)
Email support groups - LAMLine and LAMFamLine
There are two email support groups. The LAMline is for patients and the LAMFamline is for family members and friends.
Using these groups means you can quickly contact a number of LAM patients or families and it provides a forum for you to share your LAM questions, queries and experiences. To join one of groups, please see Contact Us
LAM Meetings
A key event in the year is the annual LAM Action meeting. Held in June each year it provides a fantastic opportunity to meet other LAM patients and their families.
Everyone approaches their first meeting with some trepidation but once the ice is broken you soon forget your worries. The benefit of being able to talk with fellow patients face to face is immeasurable.
The day is split into two segments. The first segment is the "business" one where we elect the executive committee, hear reports of the year's activities etc. We try to keep this short (just long enough to do all the things we have to do as a Charity) as we know that most people are primarily here for the second segment.
This is when a combination of guest speakers and speakers from within LAM Action present sessions on a range of subjects.
Lunch is provided and there is normally a raffle or lucky dip of some kind. All members of LAM Action are sent details of the meeting in the Spring/early summer. If you haven't received any information, please contact Jan Johnson.
You may like to look at reports of previous meetings to give you an idea of what they are like.
LAMPost
LAMPost is LAM Action's newsletter. Published about 4 times a years, LAMPost is designed to keep patients in touch with each other and with national or international developments with LAM. The current and old editions can be found at "LAMPost"
History of LAM Action
LAM Action began life in 1997 as The LAM Trust. Thanks must go to Eva Rathbone, a patient with LAM, who a few years earlier had been concerned to find that there appeared to be very little research into LAM. The Nottingham group were stimulated to carry out an initial study to see whether LAM might be related to taking the oral contraceptive pill (it isn't). By coincidence a few patients around Nottingham were diagnosed as having LAM in fairly close succession so they decided to hold a meeting in Nottingham for local patients. None of the patients, of course, knew anyone else with LAM. By this time Simon Johnson was starting to do some further research into LAM and to do this he had obtained names and addresses of patients with LAM elsewhere in the country. It was a fairly short step, therefore, to invite all the patients with LAM to a meeting in Nottingham and the first meeting was held in the summer of 1997.
Over the years the activity of the group grew tremendously and in 2002 the decision was taken to change the name of the group to LAM Action and establish ourselves as an independent charity instead of being part of Nottingham City hospital's charitable trust.
Fundraising
The second purpose of LAM Action is to raise money for research as it is often difficult to obtain money for research into a rare disease. Over the years, LAM Action has raised a considerable amount of money, from a variety of sources. These have included sponsorship from marathons and other sporting events, pub quizzes, employee matching schemes, donations from women’s and church groups, Christmas card sales and generous gifts from friends and relatives.
To date our funds have allowed us to fund a post doctoral research scientist in Nottingham, part fund a treatment trial assessing the efficacy of the antibiotic doxycycline and to employ our part time coordinator, Jan Johnson. Jan is responsible for running the LAM office and is usually the first point of contact for newly diagnosed patients and general LAM based enquiries. She also helps organise the LAM Action annual patients’ meeting and maintains the UK register of LAM patients.
The money has come in very steadily over the years thanks to a lot of excellent work by patients with LAM but we still need more. More details about our fundraising and what we do with the money can be found on our fundraising section.
Juliet Stevenson