Myositis UK Conference Sunday 23rd July 2023

[Jo-Goode]

We are pleased to announce that we are holding our Annual General Meeting and Conference at the Woodland Grange, Leamington Spa on Sunday 23rd July 2023 - please see website for full details

The conference is free to members & their partner/carer, lunch will also be provided. Parents or guardians along with a child living with Myositis are also free to attend.

There will also be an informal meet up & chat on the Saturday afternoon (2-4pm) of the weekend with tea coffee and biscuits provided for those staying at the hotel, living or staying nearby.

To attend, please download and return the completed registration form via the Myositis UK website (see link below)

We have secured accommodation at the hotel, with either walk in showers or fully accessible rooms including breakfast. If you would like to book this accommodation, please download the accommodation form via the Myositis UK website & return with your booking form to Myositis UK.

myositis.org.uk/events/agm/

[Institches]

Jane, Is the conference going to be shared via Zoom or some such equivalent. Leamington Spa it too far for me to travel and as myositis is a disabling condition I would have though sharing over the internet to be an ideal way for more people to join in.

Institches

[Jo-Goode Administrator in reply to Institches]

The charity had a trial of the conference being professionally recorded several years ago (after requests from members) this was when the conference was held in one large room. Take up was unfortunately limited for the copies of DVD's & left with a large stock to give away for several years after. Since this time, acting on feedback from members, the conference has grown & divided into 3 separate rooms, the largest room for IBM to accommodate the biggest sub group of Myositis + adequate room for wheelchair/scooters, a room for Dermatomyositis, NAM & Polymyositis (a room before covid we was outgrowing) & family friendly room for Juvenile Dermatomyositis. The Trustee's looked at the USA TMA patient conference recordings on YouTube, noted the low views on most videos & an ongoing issue of complaints about sound & picture quality, so to avoid this issue it was felt it should be professionally recorded; added to this would avoid the complication of finding 3 willing volunteers each year to spend the day recording the conference in each seperate room + finding a suitable tech savvy person to stream online or place video's online at a later date. With this in mind the charity obtained quotes & quite frankly shocked at the cost, so felt on balance the high cost sadly couldn't be justified. The majority of those attending the Myositis UK conferences have Myositis + partner's/carers (I've had Dermatomyositis for almost 30 years & attended all but one). The charity spends a lot of time travelling to find a suitable disabled friendly venue & accommodation, even down to the chairs having arm rests, so easier for a person with Myositis to get up from the chair. With covid sadly still an ongoing issue, the venue has been taken into consideration to mitigate risk. Despite our physical difficulties having Myositis, if you are able to travel it's great opportunity to meet others in our situation (some regually travelling from Scotland), also a unique opportunity to hear directly from specialists & researchers in our rare condition. I hope I have explained the reason why at the present time the charity is unable to have the conference online. Regards, Jo