On Saturday 19th October we hosted our annual Support Contact Training Day online, inviting all Caring Matters Now volunteers to the morning session and having a focused afternoon for our Support Contacts to think about their next events. Each volunteer received a travel mug to keep themselves topped up with hot drinks throughout the day, alongside some biscuits! (With thanks to our newly appointed Mailout Volunteer who diligently packaged and posted the parcels!)
We began the session with this photo, a photograph of one of our longstanding Support Contacts alongside a Young Adult member. Our Head of Support suggested that this photo ‘could speak a thousand words…’ and reminded the team of the power behind volunteering. This photo shows a relationship which has been formed across many years of sharing time, space, and a shared drive to support other people affected by CMN.
We began the day with Jodi, our charity Founder and CEO, presenting on our newly expanded volunteer structure, sharing our plans for 2025 and delivering a financial update. As a team, we shared the progress of some new and exciting projects including our Schools Project, conference developments, our MEK focus group, Self-Advocacy Pack and much more!
It was a privilege to be able to report on all the initiatives our volunteers are involved in, knowing what a difference they will make to our community both now and in the future. An example of this is the newly developed Self Advocacy Pack which was developed in response to the work one of our Young Ambassador, Maddie, undertook as part of her work experience.
Through the training day it was clear to see how each volunteer’s contribution is invaluable to the work of Caring Matters Now, with each role interconnecting with one another.
Several of our volunteers reflected on the noticeable the growth of the team this year and that they now felt part of something much bigger!
“It is so lovely to feel so valued and I feel honoured to be involved. Really enjoyed this morning and great to learn more about what goes in at your
end.”
“You are all doing such amazing work. I am in awe of what you achieve!”
“Thank you for a lovely morning on Saturday- it was great to see all the hard work the community is doing and nice to meet everyone virtually!”
In 2023, we invested in Equality, Diversity, and Inclusion (EDI) training for our volunteer team. This year we were able to report to the team of the strides we have continued to make in improving the accessibility of our events and our support initiatives for all our members; we discussed our Regional Gathering accessibility forms and feedback from members on the accessibility of this years’ venues; and we introduced the role of our Medical Advocate volunteer who works alongside the team to improve accessibility for all members.
We finished the morning session by watching Anna Grace’s Personal Story Film, setting the tone for a discussion after lunch around the impact of our recent research announcement.
During the afternoon session we gave space for our volunteers to discuss the recent research breakthrough, as most are all personally connected with Caring Matters Now by either having CMN themselves or having a loved one with CMN. The team understood that to be able to provide the best possible support to our members, it’s crucial that we are all operating from a place of understanding- both our own feelings and the feelings of the members we support. The team discussed the many expressions of CMN and how individual experiences will impact emotions and responses to the research breakthrough of a possible effective treatment being developed for CMN.
As a team, we then reflected on the number of young adults who have reached out to us for support since the research announcement and shared thoughts around communications and the development of our Adult Support Guide. Our Teen Contact and Young Ambassador Volunteer also reported on the progress of our 16 active Young Ambassadors, the success of the Teen Ninja Warrior event earlier in the year and shared some ideas in making communication with teens more effective.
The day concluded with reflections and storytelling from our Regional Contacts following our 2024 ‘In-Person’ events and discussing 2025 support event plans and fundraising opportunities – all of which will be included in our upcoming INSPIRE magazine!
Our volunteer team demonstrated dedication and a shared excitement – one volunteer joined us online whilst being driven cross country on the way home from holiday, another volunteer joined on a rare day off work and another volunteer joined at 4.26am from New York having been awake due to jet lag!
We are so grateful to all our volunteers – we couldn’t do what we do without their support! A big shoutout to you all…
Dahlia – London Regional Contact
Diane – Southeast Regional Contact
Rachelle – East Anglia Regional Contact
Fiona – West of England & South Wales Regional Contact
Colin – South West Regional Contact
Caroline – Ireland Contact
Sinead – Northern Ireland Contact
Jen – Highland Contact
Lorna – Scotland Contact
Helen – North East Contact
Luke & Helen – Yorkshire Contact
Stacey – Adult Contact
Katy – Young Adult Contact
Sophie – Teens Contact
Louise – Surgical Support Contact
Frankie – BRAF Support Contact
Hayleigh – Neurological Parent Contact
Simone – International Contact
Rebecca – Medical Advocate
Karen – Merchandise Distributor
Dahlia – Social Media Support
Andy – Digital Marketing Support
Michelle – Northwest Contact
Emma – North Wales & West Midland Contact
Helen – Schools Project Coordinator Jackie – Baby & Toddler Host
Jo – Mailout Volunteer
Charlotte – Research Connector
Sophie – Young Ambassador Coordinator Sarah – Plain Language Support.
