At the start of 2021 we were all living in lockdown, with very little knowledge of what the next 12 months would hold. For the first half of the year, we continued to be impacted by the pandemic with the ongoing cancellation of all our face-to-face support events and fundraising events. During this time, we continued to provide support by hosting online events, introducing a new helpline and implementing new support initiatives and resources. Furthermore, our wonderful members and supporters stepped up and raised crucial funds to help sustain the charity’s work throughout this strange, unprecedented time.
So, sitting here now and reflecting on the past 12 months, it is quite extraordinary what has been achieved, and it brings me great joy to share with you some highlights from 2021…
This year we have welcomed two new members of staff. Hannah Cree joined the team in June 2021 as our Support Pathway Coordinator. After graduating from university with two degrees in Psychology and Social Work, Hannah worked for the NSPCC as a ChildLine advisor and then in a supervisory role. In recent years Hannah, whose son was born with CMN, has been working with our members in Northern Ireland as part of the volunteer Support Contact Team, so she understands first-hand the importance of helping children and adults living with CMN, as well as their wider families. Since joining the staff team, Hannah has developed our support pathway to ensure all our members receive age-appropriate support. She has also introduced new initiatives to help grow communities of members in which friendships develop organically, so mutual support is provided. Hannah has provided training to our wonderful team of volunteer support contacts and in recent months, the Support Contact Team has grown to 25 volunteers, with each volunteer having a specific responsibility to ensure dedicated and specialised support is provided for all those affected by CMN.
In August 2021, Rachel Swanson joined the staff team as Fundraising & Communications Coordinator. Since graduating from university in 2012, Rachel has worked in the fundraising sector for health-related charities, most recently for a baby hospice in Liverpool. We are thrilled to have Rachel on board, just in time for our 25th birthday fundraising activities! Since joining the staff team, Rachel has developed our fundraising initiatives to increase our support base, helped to develop the charity’s profile with a particular focus on our social media engagement and assisted all our fundraisers in their own fundraising activities.
In September 2021 we welcomed two new members onto the Board of Trustees. Emma Robins and Tracy Traverse-Burley both have children affected by CMN and bring a wealth of knowledge and skills to further strengthen the Board. Emma is a head teacher of two secondary schools and Tracy is a self- employed consultant, negotiating multi-million pound contracts for public, private and third sector clients.
I am truly grateful to work with such an amazing team of staff members and trustees. Together we work to ensure excellent support is provided to those living with CMN, that we continue to raise awareness of CMN throughout the medical profession and among the public, and to fund pioneering research to find the cure for CMN.
This year, we have also welcomed our first ever Charity Patron, Corrine Sinclair. Since 2018, Corrine and her husband have supported the advancement of the CMN research, as well as helping the charity to raise its profile within the corporate sector and celebrity world. Corrine became an ambassador of Caring Matters Now, and in September 2021 the Board of Trustees invited her to become our charity patron. In this role, Corrine will continue to raise the charity’s profile and network on the charity’s behalf.
Alongside our staff and volunteer teams growing, so has the work we do! As lockdown restrictions started to ease, we were able to host our first face-to-face support events in over 18 months. Throughout the summer and autumn months we hosted 10 face-to-face support events across the UK and Ireland, welcoming over 200 members. It has been wonderful to reconnect with old members and welcome new members to all our events. We have also introduced new monthly online events which have proven very popular: an online baby & toddler group and an online gaming event. It’s fantastic to see friendships between members organically developing through these events.
Following the huge success of our HOW DO YOU C ME NOW? photographic exhibition in 2019, and the launch of our HOW DO YOU C ME NOW? photographic book in 2020, the Caring Matters Now Board of Trustees wanted to build on that momentum and continue to raise global awareness of CMN. So, this year we produced a 3-minute HOW DO YOU C ME NOW? professional documentary featuring the life story of an adult member living with CMN, Cheryl Shaw. Our aim is for this thought-provoking and emotive short documentary, to engage global audiences, and so continue to raise awareness and educate the world about CMN. In the first 24 hours of releasing the documentary, we received an incredible 450 views on YouTube and 654 views on Instagram. You can help us to continue to raise global awareness by sharing the personal story documentaries we release over the coming months.
Now’s the time to look forward! Next year Caring Matters Now celebrates 25 years, and to mark this special milestone, we have lots of exciting events and campaigns taking place which we would love you to support. I would like to take this opportunity to thank all our members and supporters for your friendship over the past 25 years. It is because of YOU that we have been able to provide support, raise global awareness and fund research which has found the cause of CMN. It has been an incredible journey which has been a privilege and a blessing to be a part of. I can’t wait to see what happens over the next 25 years!
Caring Matters Now Founder & CEO