Sally’s message – October 2017
Last year, I was fortunate enough to be able to attend the Amsterdam City Swim. This year saw the very first London City Swim, at the Royal Victoria Docks, in aid of the MND Association and the Stephen Hawking Foundation. Over 300 swimmers took part, including 2 people with MND. The event raised over £120k for genetic research through Project MinE. A special thank you to all the volunteers who helped out on the day, and the very brave volunteer from the South London Group who swam!
I know many branches and groups like to donate to specific areas of our work, and the Chief Executive’s appeal is designed to help you do just that. Last year, you very generously donated £223,500 to the CEO appeal and we’ve already received £62,000 this year from 14 branches and groups. As always, a massive thank you, your donations and support are very much appreciated and are critical to our ongoing ability to support people affected by MND.
As mentioned in previous editions of The News, we’re currently in the process of moving over to a new database. Work is well underway and as part of this we need to ensure that all of our records are kept up to date. The volunteering team will be keeping you updated with the progress of this and will be in touch in the near future.
This new system will also help us to comply with the new General Data Protection Regulations which come into place next May. Like all charities, we have to review our policies and practices to ensure we comply. We also need to start to ask people affected by MND to opt into receiving information about the Association and our services. To comply with this, we’ve had to make a few changes to our introductory process. We are mindful that this means asking volunteers and staff to capture more detail from the people we support. Thank you in advance for your help with this.
Our annual parliamentary reception took place on 17 October. Over 50 MPs attended to learn more about the financial impact of MND as featured in our MND Costs campaign. The All-Party Parliamentary Group on MND also launched a report into access to Personal Independence Payment. Each year, this is a great opportunity for branch and group volunteers to meet with their local MPs to raise awareness of MND in their local communities. Over 130 volunteers attended this year, thanks to all those that could make it.
Finally, as we are nearing the end of October I have to mention Silence Speaks. As many of you know, Silence Speaks is one of our mass participation events, in support of the 80% of people with MND who experience speech difficulties. A massive thank you to all of you who have got involved this month, whether as individuals, families, or as your branch or group – your support, as always, is incredibly valuable.