News
Our latest news and updates
MVA’s first research conference
On 17th September we held our first ever Research Conference at GOSH, London. It was a huge success and a real milestone event for the Charity with around 65 attendees,...
MVA Society does the London-Brighton bike ride
13th Sep, the small but mighty MVA Society took on the London-Brighton bike ride in conjunction with Tanner Pharma Group. And for several of us it was anything but a walk in the park....
Meeting a family in Virginia
Last week we were blessed to be connected with Virginia and Andrea di Lallo, in Bologna, and their amazing children, Lavinia (7) and Valerio (5). Both children have MVA, but...
Reverend Kate Bottley is now a patron of MVA Society
The MVA Society is delighted to announce that Rev’d Kate Bottley has agreed to be the Patron of our charity. Kate, on her Radio 2 program – Good Morning Sunday...
MVA Society on the Chris Evans Breakfast Show
https://youtu.be/XHtcQI_N1t0?si=PKwYnrcBOPvTOC65 The MVA Society had an amazing visit to the Chris Evans Breakfast Show on Virgin Radio on 2nd June. What a great guy and what a great opportunity to...
MVA Society meets the Prime Minister
In January 2026, George was invited to meet the Prime Minister. Sir Keir being our ‘local MP’, George, along with some other children in his constituency, was invited for tea...
The MVA’s “Famous Five” take on the 2026 London Marathon
For some, its a first marathon. For others, its more of wanting to experience 26.2 miles of awesomeness again. The MVA Society is the first and only organisation in the...
