This was my first time at the Muscular Dystrophy Campaign National Conference and I have to say I thoroughly enjoyed my day. We had a stand for the FSH-MD Support Group UK, and we met many people, old friends and new and the support was really encouraging so thank you for taking the time to find us, tucked away down a corridor, it was much appreciated.
There were various talks from people living with MD whether that be, being a parent of a child with MD or Research representatives outlining the latest advances in potential therapies.
Nick Bungay gave a talk about the Bridging the Gap Campaign which will ultimately create a website where patients will be able to access a regional map of services to find out about clinics and local support services such as hydrotherapy pools, and enable all areas of the NHS to be better informed of services available to Neuromuscular patients and identify gaps in services. At the heart of this MD patients need to share information with the MDC and with that in mind, if you feel you are being forgotten by the NHS and feel you have no access to services then this is the ideal opportunity to voice your concerns, opinion and you never know, possibly change something. If you wish to contact the Muscular Dystrophy Campaign to help with this valuable step forward, please email firstname.lastname@example.org. There is a comprehensive amount of information on Bridging the Gap on their website at muscular-dystrophy.org
In the afternoon there were workshops for various MD conditions and I attended as a panel member the FSH-MD workshop together with Dr Hilton-Jones, Consultant Neurologist (specialising in Neuromuscular disorders), Katie Mitchell, Senior Manager, Volunteer Fundraising and Edwina Perkins, The Regional Care Advisor in Newcastle. This was a chance to ask the Panel anything and to reiterate the importance of being under a Neurological Consultant and the access this gives to various areas and especially the paper chasing as an MD patient for various routine renewals including, Driving License applications, verifying the ability to drive, the new PIP (Personal Independence Payments) . Not to clobber GP’s but in reality as discussed at the panel, only 1 in 10 GP’s will ever see a Neuromuscular patient in their lifetime so it may not be top of their agenda for bed time reading. So it is worth thinking about, that although at the time of your diagnosis, you needed little input from NHS services but as the condition progresses there may be a point that getting back under a Neurologist would be of huge benefit in terms of the realities of trying adaptions and aids and finding out what is available to you. A Neurologist could give you direct access to an Occupational Therapist and Regional Care Advisor at your annual or biannual appointment.
Louise Moyle from Kings College London joined us, if you have read the latest Newsletter, Louise Moyle, whose PhD research project is part-funded by the MDC, and is currently trying to see if the DUX4 gene’s satellite cells can be the target for possible drug therapies, so this is very encouraging. Louise has kindly offered to update us periodically via our website, fsh-group.org
Lastly, we spoke about the Action on FSH Campaign. The FSH-MD Support Group are fully supporting the effort to raise £45,000 for Research in FSH, we have a my donate button at fsh-group.org where all funds go straight to the MDC’s Action on FSH Campaign, that’s every single penny for Action on FSH. We as a Group are trying to raise £10,000 towards the £45,000. If there are 1300 FSH patients in the UK to raise £45,000 would mean a donation of 34.62 per person. This really inspired me and I kindly volunteered my long suffering better half Christopher Finister to run the London Marathon in April 2014. So I will shortly be bombarding everyone with pleas for sponsorship and there will be nowhere to hide.
With a huge thank you to Liz Orme, Gill Penny (Secretary to the FSH-MD Support Group) and Roger Penny for all their help throughout the day, their perseverance through horrible weather and all at their own expense to help raise awareness of the Group and to try and reach more FSH patients who wish to access support and information via a peer to peer network. To our other Committee members, Karen Bayliss, Traceyanne, Dan, Michelle, Emma,Neil, Juliet, Stacey, Adam and our newest member Charlotte for their continued support despite personal challenges and commitments and their generosity in terms of time in updating our website, facebook page and creating our newsletters.
Chair, FSH-MD Support Group UK