The Thalidomide Society was formed in 1962 by parents of children with congenital disabilities caused by the drug commonly known as thalidomide.
The Thalidomide Society has a Board of Trustees which consists of six members, two of whom are Chair and Vice Chair. The current Chair of the Board is Edward Freeman and the Vice Chair is Marie Pearse. The secretary is Ruth Blue and the Honorary Treasurer is Anthony McGarel-Groves. Together with the rest of the Board, the team are working to maintain the goals and objectives of the Society as well as pushing forwards into new areas of research and promotion.
Our members have a wide range of impairments and come from a broad cross-section of the public. Some members were brought up in special schools and hospitals whilst others enjoyed the comfort and support of a warm family home. Some have gone on to forge good careers whilst others have led a quieter, more secluded existence. Some have married and had families whilst others have mostly lived their lives alone. Some have been heavily involved in campaigning whilst others have preferred to watch and support from the side lines. There is no standard thalidomide-affected person because there was no standard mother who took the drug, it was made available to all. At the Society, all different aspects of the social spectrum and all levels of impairment are accommodated and welcome. We also welcome the families and carers of thalidomide-affected people as well as those from other dysmelic groups.
Over the last two years we have had two major celebratory events. In 2012 we held a conference at the Park Plaza Hotel in London which was attended by over 300 people and included speakers such as Alf Morris and Harold Evans. This event marked 50 years since the withdrawal of the drug from the market. In 2013, another 50 year anniversary took place to mark the official beginning of the Thalidomide Society and included an oral history presentation as well as members’ memories from the various decades of Society history. In general, the Annual General Meeting of the Thalidomide Society takes place each year and provides an opportunity for people to meet up, share memories and be part of the on-going thalidomide community. Current activities include fundraising, oral history, research and archiving as well as our usual support network.
Funding Our Achievements
To fund its activities, the Society depends mainly upon individual donations, legacies, corporate donations and investment income. It has also received funds from time to time from government or other grant-making bodies, some of which are described below.
Department of Health
A major grant in 1995 gave us three-year funding to carry out a wide range of activities including:
- Providing information to statutory and voluntary bodies, and the general public
- Setting up workshop sessions, seminars and self-help groups
- Giving support and advice to families with similarly disabled children
- Expanding the Society’s international links
We used a grant from the Community Fund in 1997 to produce a video on the lives of thalidomide-impaired people.
A further grant from the Fund enabled the Society to undertake research into the health quality of life of thalidomide-impaired people. The project was carried out in partnership with the College of Health and was completed in 2002. The results have been disseminated widely and copies of the summary have been distributed to all thalidomide-impaired people. Click here to read the summary online.
The Society depends in part upon individual donations and legacies to fund its work. If you would like to help us in this way and would like more information, please contact us.
The Thalidomide Society is a registered national charity, number 231708. It is also a company limited by guarantee, registration number 770036.
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