On Saturday 19th November we hosted our annual Support Contact Training Day in Euston London, 11 Support Contacts joined in person, 8 Support Contacts joined us online, 3 staff members and our chair of Trustees also attended.

We heard recent Charity Updates from Val, our Chair of Trustees and Finance Updates from Lisa, our Finance and Administration Officer. Lisa reminded everyone to be vigilant,  what to look out for and who to report any emails to. The charity continues to report is has not been subject to any financial fraud.

Our focus this year from a support perspective was to equip each volunteer with information as part of the wider ‘team.’ Our Support Contacts shared stories and reflections from the past year of Regional Gatherings, and we discussed how these events can be used to signpost onto further support initiatives within our Support Pathway. For example, our Online Communities, Databank access, 1-2-1 mentoring with teens, our Young Ambassador’s Programme, support consultations with our Support Pathway Practitioner. Having reflected on what has gone well this year, attendance levels and location of our members who haven’t attended our Regional Gatherings in recent years, we spent time planning Support Events for 2023.

We heard from our South West Regional Contact, Colin Mackenzie who recently took part in research alongside the Centre for Appearance Research focusing on Mental Health and CMN. Colin advocated for the importance of this research into mental wellbeing as a vital component of care for our members living with a visible difference. Colin encouraged the team to take part in research where given the opportunity.

Our Neurological Complications Parent Contact shared the success and impact that starting a MEK inhibitor drug trial at GOSH has had on her son’s CMN. The team were greatly encouraged to see the research we have been hearing about for years impacting a family in this way.

Each year our Support Contact team have a skills-based session, this year the team took part in a memory pegging workshop, a skill which is taught within the Dale Carnegie Course in Level Two of our Young Ambassador Programme. This activity was introduced as useful tool which can be used whilst hosting busy Regional Gatherings or events and wanting to invest in meaningful conversation at the same time.

The day concluded in discussing fundraising as an alternative form of support for some of our members who don’t want to access ‘typical’ support but want to give back. Rachel, our Fundraising and Communications Officer, shared recent fundraising developments with the team and we considered how we might invite members to partake in regional fundraising events.

As always, we had a fantastic and informative day together as a team, momentum is building as we look forward to the support we will provide our members together in 2023!