FSH Summer Get Together 2014

Click Here for the Booking Form

Permanent link to this article: http://fsh-group.org/?p=1041

Chris Finister’s Marathon Run

As you may or not be aware, Christopher Finister (partner to Liz Williams, Chair FSH-MD Support Group UK) is running the London Marathon this year on 13 April 2014 to raise funds for the Action on FSH Campaign for the Muscular Dystrophy Campaign.

This money is key to keeping the FSH Registry and fund ongoing research for FSH-MD.

Please click the link below if only to see Chris’ face when he found out he was running the marathon.

Any donation no matter how small will make him run faster.

http://www.justgiving.com/Christopher-Finister

Permanent link to this article: http://fsh-group.org/?p=1017

Facebook 300

Welcome to our new look website and I hope you find the information useful.  I thought I would write a few lines regarding our Facebook Group Page, where we now have reached the milestone of 300 members.  This is a fantastic take up on a really simple way of either getting in contact with other members with FSH or asking questions about the condition or living with it day to day.  I do feel the Support Group title may put some people off joining our community, that perhaps it gives an image of us all sat crying into our coffees, but this couldn’t be farther from the truth. 

I was guilty of this preconception, until I went along to my first Support Group meet up back in 2009.  I think curiosity lead me to the group, a chance of meeting other FSH’ers and how they cope with day to day living, whether I was the only one who had issues with various day to day tasks.  Look where it brought me.  It brought me right out of my comfort zone doing things I would never have done without the support and encouragement of others who really understand what it means to have FSH.  I suppose it found me at the right time, when I was mentally prepared to face my future, but it has only been positive for me.  The Facebook online network has really been a great source of information and support, our Group is FSH-MD Support Group UK, you search it in the box on Facebook and you ask to join, we just need to confirm that you have a specific interest in FSH whether it be a carer or have FSH yourself.  Alternatively log in to Facebook in another window and click our find us on Facebook icon top left on our homepage.   It is a closed group so none of your non FSH Facebook friends can see what you have written, it is a safe place to vent, or share information or ask a question where no one else can see, only FSH’ers in the group.  I know a lot goes on behind the scenes in the group, whether it be other members making lifelong friends, even with people they have never met or are ever likely to, but we provide a platform for this to happen in a safe environment.  So if you are at all curious about who is out there, whether someone is in the same situation as you, please do not hesitate to get involved.  You can always switch us off, what have you got to lose? 

We also have an Action on FSH page on Facebook, please search and like the page.  This will keep you updated on any fundraising events and how we are getting on with our target of £10,000 to help fund research into the condition.

 

Liz Williams

Chair FSH-MD Support Group UK

Permanent link to this article: http://fsh-group.org/?p=1012

The National MDC Conference 2013

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 campaigns@muscular-dystrophy.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.

Liz Williams

Chair, FSH-MD Support Group UK

Permanent link to this article: http://fsh-group.org/?p=1001

Action FSH Appeal

The FSH-MD Support Group UK has joined forces with the Muscular Dystrophy Campaign to help raise funds for the Action FSH Appeal. The Target is £45,000; we as a group are hoping to raise £10,000 in the next twelve months.

We’re asking our members to help us by perhaps organizing a fundraising event or donating direct. There are lots of ways to fundraise, everything from coffee mornings, car boots, to swimming with sharks and sky diving, and lots in between. So put on your thinking caps and come and join in the fun……. You can donate directly to our FSH my donate page

Or via this website see the My Donate Button

For more information go to Action on FSH

Thank you for your support

Permanent link to this article: http://fsh-group.org/?p=937

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