We would like to make a statement underlining the position of the two charities with regards to the current work being done in Ehlers-Danlos syndrome via global professionals and the negative and hurtful responses that many of those involved have recently been subjected to. We are extremely grateful to all our medical advisors for taking a lead in reviewing the latest evidence regarding all aspects of EDS and highlighting the gaps to be further investigated.
It is our belief that this important work will lead to valuable new information which will only be respected by all medical, health and social care professionals (and our service providers) if they can be confident in the validity of the evidence used to base this information on. Therefore, only strong research-based evidence should be considered in any new guidance. Where there is no evidence to support anecdotal reports or claims of potential associated symptoms this can only be addressed by conducting new research.
This is an exciting time for our community. We understand that change can feel threatening and not everyone will agree with the changes which may emerge. It is normal for different opinions to surface through discussion. This is how knowledge is advanced. We understand that many people feel very passionate about the subject and everyone’s opinions are equally valid.
However, we would like to stress that neither charity will allow personal attacks on any of our medical advisors, or others involved with the work, on our social media platforms. We will not tolerate any abusive behaviour towards medical advisors or other professionals and we are greatly saddened by recent occurrences which only serve to impede the good work that is being done for all our benefit.
Our shared medical advisors, Donna Wicks (HMSA, CEO), Kay Julier (EDS UK, Managing Director) and staff/volunteers of both organisations work tirelessly to ensure that our members’ concerns are well represented. Both the HMSA and EDS UK welcome any constructive comments to be sent to the charities by email firstname.lastname@example.org and email@example.com
The Hypermobility Syndromes Association is currently looking to recruit several ‘Fundraising Support Volunteers’ to create a close-knit and dedicated team, specifically to support the fundraising efforts of the charity, whilst also being part of a larger volunteer pool and to feel part of the wider organisation.
Any individual must be self-motivated, dedicated and organised – being able to work as a team or on their own projects.
The HMSA is grateful for any volunteers who show the right attitude and qualities that the charity looks for generally, however we appreciate finding spare time isn’t always easy, so it is anticipated these roles would take between 2 and 5 hours a week.
The roles will include a general fundraising overview (to be able to offer cover and continuity in absenteeism of colleagues) but will largely consist of one of the below specific areas:
1) Co-ordinating Fundraising Volunteers
Dealing with fundraisers in the build-up to and after their events.
Arranging of fundraising packs.
Making sure information reaches social media channels.
Ensuring fundraisers are properly supported and thanked.
2) Fundraising Media (including social media and website changes)
Working in conjunction with the social media volunteers to ensure fundraisers, events and ‘Business Friends’ / associates of the charity are properly advertised.
Highlight specific fundraisers for special / specific media exposure in conjunction with other volunteers.
Ensuring website sections are kept up-to-date.
3) Business Friends
Sourcing new ‘Business Friends’ for the charity.
Writing bespoke agreements for the same.
Maximising the income potential.
Keeping track of on-going donation totals and ensuring Business Friends and suitably thanked.
4) Managing Ways to Donate
Finding and managing different services in which the charity and charity’s membership and can donate and /or raise funds for the organisation on and on-going basis
Managing and maximising existing services such as ‘Give as you Live’.
Working with the accountancy teams to ensure sums received reconcile across the various platforms against bank statements.
For an informal chat about these roles please email firstname.lastname@example.org giving your telephone number so that he can call you back. If you would like an application form please email email@example.com
The Bristol Symposium planned for the 20th August will need to be postponed by a few weeks because our hydro-therapist is unwell and other local professionals had to drop out due to summer holidays.
We are very sorry about this but we want to ensure we give all of you a high quality event to attend; and sadly this would not have been the case if we proceeded.
We are just waiting for new dates from our professionals and will re-launch as soon as we know.
All people who have paid can be refunded or the ticket held over until the new date.
We will also work hard to make sure we have the dates and geographical areas of the other 5 events available at the same time.
Please know that our hands are tied on this occasion.
The IFOMPT conference is a prestigious musculo skeletal physical therapy international conference which is held every four years. This year Rosemary Keer, Verity Pacey and Jane Simmonds were invited to host a focused symposium on advancing practice in hypermobility. The symposium attracted more than 200 IFOMPT attendees. Rosemary, Verity and Jane presented the current diagnostic criteria for Ehlers-Danlos syndrome – hypermobile type, and the approaches to assessment and management across all ages.
The key take home messages to attendees included early recognition and the provision of holistic care.
Congratulations are sent from the HMSA to all three of them for being invited to speak. Our thanks go to them not least for their tireless work in supporting patients with hypermobility disorders, and their support of the HMSA, but also for the extensive work they do to support and teach other health care professionals. The HMSA Office. July 2016.
Update: Event postponed 27:07:2016, please note shop link will no longer work.
The HMSA is running a day at the fantastic Freeways Centre in Bristol on the 20th August 2016.
This is the first of 6 planned days throughout the UK, and is part of a wider model based on assisting people to understand and live well with their hypermobility syndromes, or heritable disorders of connective tissue (HDCT) and to ensure professionals have the education they need to assist their patients. To learn more about the model the HMSA is promoting please contact firstname.lastname@example.org
Hypermobility syndrome (or HDCT) is an umbrella term for conditions related to hypermobility.
joint hypermobility syndrome,
Ehlers-Danlos syndrome (all subtypes),
Often being given a diagnosis is just a starting point to the more difficult need to develop the skills on how to live well with these complex multi-systemic conditions. Pain, fatigue, cardiac dysfunction, gastrointestinal issues are just ‘some’ of the aspects that need management. The HMSA has provided this day based on its Information Standard accredited work.
The day has been designed predominantly for adults but will be equally appropriate for 15 years and above.
There will be sessions led by Dr Alan Hakim, Chief Medical Advisor to the HMSA, as well as the medical team.
Local professionals have been invited to attend the day so as share how the services can be best accessed and used, and to hear your views on the services in the local area.
There is an opportunity to try or use the hydrotherapy pool with qualified hydrotherapy professionals and poolside assistance.
The HMSA will also be launching a new benefit for all HMSA members (over 16’s) on this day, which reflects our ethos on the need for positive self-management and the aim to live well!.
Lunch will be provided, but please bring snacks if on a complicated diet.
You can purchase your tickets here in our webshop