FDSSUK BREAKING NEWS
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FDSS History
FDSS History
During her early years Ann had two greenstick fractures, the first treated by hospitalisation for six months without surgery. Following discharge from hospital in full leg calipers, her leg fractured again six weeks later whilst wearing it! Another six months in hospital! Ann was determined not to allow her FD diagnosis to define her personality and life journey. It didn’t stop her playing squash, going on walking and scrambling holidays.
When Ann’s femur completely gave way in 2001, she now had zero mobility and her FD was preventing her from participating in the activities she so enjoyed. She felt very concerned about the outcome of the surgery and was absolutely petrified her leg would break before she could have the surgery. This type of surgery was very new and experimental, so there was no certainty as to the outcome.
The UK medical professionals knew very little about FD, so Ann made it her mission to learn more about the condition and arranged to meet Charles Harles, the then president of the Fibrous Dysplasia Foundation (FDF), in Washington DC. Charles asked for volunteers from countries outside the USA and Ann volunteered as UK Liaison for the FDF. FDF shared with Ann the contact details for all FD/MAS sufferers in the UK and she made contact with all 114 on the list. There were 100 individuals with FD and 14 people with MAS.
The feedback from patients was sufficiently encouraging, so Ann decided to organise the very first UK patients meeting in Birmingham in March 2006. With energy to make a difference, Ann contacted the Department of Health and was put in contact with Dr Jessop through whom she met Professor Wass, an Endocrinologist. (Dr Kassim Javaid, who is now an active trustee of the FDSSUK, actually worked with him). There were 19 people at the first meeting.
Through her own journey with FD Ann knew the most important thing for sufferers was to establish a support network. This would allow those affected to help each other through sharing their own experiences.
Ann was very passionate about helping others with the condition and she created the UK Fibrous Dysplasia Support Group in October 2006. With the support of some others, some names you may recognise, namely Jamie Watson, Sue Szablewski, Francesca Watson, Kevin Brittlestone and Stephen McMurray, Ann arranged annual society meetings. They continued to hold yearly meetings and a website was established to enable people to find us.
The Fibrous Dysplasia Support Society was supported in the early days and continues to be supported by Dr Nick Shaw and Dr Kassim Javaid, from Birmingham and Oxford Hospitals. We are all extremely appreciative of the time they have afforded us over the years.
Quietly watching things evolve, Jamie had a ‘light bulb’ moment.....
Let’s raise enough funds to bring leading medical specialist Dr Mike Collins over from the USA. That’s when things really took off. In 2015, the Committee Members had raised sufficient funds to invite 2 leading specialist over from the USA, namely Dr Mike Collins and Dr Alison Boyce, to our patient meeting in Oxford. Also in 2015 with Dr Kassim Javaid’s help, we were able to raise sponsorship for the very first joint UK & USA Medical Professional Master Class in Oxford. Dr Kassim Javaid came on board to support the group and through his medical connections has continued to help with fostering international relationships.
Relationships have continued to be developed with the international fibrous dysplasia patient groups and medical community. Developments in social media, such as Facebook, has permitted the learning and sharing of information across both the UK and international patient communities.
By 2017, Fibrous Dysplasia Support Society’s social media presence was expanding and many members were regularly using this as a platform to share experiences and access support. We continued to hold patient meetings annually and have been privileged by Dr Mike Collins, Dr Alison Boyce and Dr Robert Stanton from USA supporting our meetings bi-annually, where they have updated on medical research work and also offered 1:1 consultations to patients. This was all made possible through members and their families generating donations through participating in bike rides, marathons, coffee mornings etc.
During 2017, with the help of trustee Mike Cantwell, the FDSSUK Committee applied for and obtained official charitable status, which opens funding avenues that were not previously available. Trustees Heather Wall & Jamie Watson are actively following up on potential opportunities for regular educational grants and also sponsorship for specific initiatives. As we continue to develop and grow as a charity, we aim to build upon the support currently offered to our members and strive towards having more regular national and regional events. We are also keen to proactively support research into FD/MAS.
Trustee Steve Bullock is leading on the upgrade of our website, so that it continues to be relevant and meets our members expectations and the requirements of a modern charity website.
Trustee Heather Delaney is the charity secretariat, she also coordinates the members list and manages the Facebook and website queries from our members. Trustee Sarah Russell is managing the twitter feeds.
Trustees Heather Delaney and Jamie Watson have continued Ann’s work with the international consortium, which also has representation from patient groups in France, Italy, Holland, Brazil, Spain and of course the USA. There is work ongoing with the international groups to create an international awareness week for FD/MAS and design a logo that every country can use.
The trustees attend rare disease events to build relationships with other charities, patient groups, research companies, medical professionals, pharma companies and most importantly to raise awareness for FDSSUK.
Trustee Dr Kassim Javaid is leading on the formation of a medical advisory board.
The trustees work together to organise annual events which we do hope you find useful. Trustee Glen Erskine has been linking with the doctors to arrange patient 1:1’s consultations.
All the FDSSUK trustees (pictured below) are volunteers who are affected by FD/MAS, either as a patient, carer or medical professional. Each volunteer brings expertise that will assist with growing the charities work, in the hope this will facilitate a better future for FD/ MAS sufferers.
