A review of the year for Max Appeal

For many of us, 2022 has been a challenging year.

We have all emerged from COVID lockdowns and tried to resume our lives. Members of our community will have experienced additional challenges with so many changes over the last few years. However, some of the practices Max Appeal has put in place, enabled us to connect with many more of our members. Our online sessions, for coffee and evening meet ups, and our monthly quiz are still very popular and help to bring our community together even when we cannot always meet up in person. The new online gaming group has seen some of our members connect and enjoy each other’s company whilst practicing their gaming skills. 

Getting back to social face to face meet ups is welcomed by many members. Regional outings and events to mark 22q at the Zoo were enjoyed and our first weekend activity camp for several years was held at Cranham,  Gloucestershire. Our thanks go to everyone who enabled these events to take place.

We have continued to raise awareness of 22q11 syndromes and the challenges it brings for many of our families. This was achieved by being members of wider groups and working in collaboration with them on subjects affecting all of us, such as the New-born Screening Collaboration, highlighting the issues  from the Downs Syndrome Act for those with other genetic conditions and rare diseases through Genetic Alliance and Genes People and congenital heart disease through the James Lind Alliance. Several projects aimed to increase awareness of 22q11 Syndromes, and we worked with other professionals to deliver these. They included a webinar with Natera, an international genetic testing company, aimed at professionals and a project with Bath University students producing a series of podcasts to increase awareness of 22q11 syndromes. We were also able to meet again with Members of Parliament through the 22q11 Syndromes All Party Parliamentary Group and include professional speakers to help them understand the issues.

Throughout the year, we have represented Max Appeal and worked with other European Associations through the European network, 22q11 Europe. We were able to meet with others in Copenhagen in June and formulate plans to take our work forward. Max Appeal was represented at other international meetings, in Split Croatia, Oslo Norway and New York USA. Having access to expert professionals in 22q11 Syndromes and delivering opportunities for members to access their expertise through on-line sessions is most valuable. We were pleased to see the release of online learning videos (MOOCS) for 22q11 Syndromes released in November, a project which Max Appeal has helped to fund and an online question and answer session with the professionals.

We will be continuing to attend specialist clinics for 22q11 Syndromes and we hope to do more of this in 2023.

The return of fundraising events, such as the Great North Run, London Marathon and all the local events which so many of our supporters attended to support Max Appeal and raise valuable funds is so important for us to continue our work supporting those affected by 22q11 Syndromes and their families. A tremendous thank-you to everyone who has helped over the last year. We know 2023 will continue to bring many challenges for many of us, but together as a strong community we will make a difference by working together.

There are some exciting opportunities being planned for 2023. These include.

·         A review of the UK Consensus Document for 22q11 Deletion Syndrome, led by Dr Andrew Gennery. 

·         Some regional social face to face meet ups led by our Trustees, dates and venues to follow.

·         Continued on-line sessions for ease of access.

·         Outdoor activity camp at Cranham, Gloucestershire at the end of May.

·         Proposals for a mid-week break for those 18 years and over at Oakhampton, Devon.  (Expressions of interest and proposed dates to follow in the New Year).

·         22q11 Europe international conference in Dublin 18-19th November.

Christmas wishes to all our members and supporters and best wishes for the coming New Year.

From Max Appeal staff & Trustees.