Dear CDCSG Members and the wider CdC community,

On 24th April 2025, we held an Extraordinary General Meeting (EGM) to discuss and vote on the dissolution of the Cri du Chat Support Group and on the proposal to transfer our services over to the charity Unique.

 

The proposal was passed by a unanimous decision, and so we are now in the process of transferring our services and winding up the organisation.

 

I never wanted to be the Chairman who presided over the closure of a 40+ year old institution that has helped tens of thousands of individuals and families during that time, but in truth, there was no other option as our financial situation meant we would be out of funds within three months.

 

We identified, back in 2022, that unless we energised our members to help our fundraising efforts, we would face this situation. Despite hosting four family fun days across the country, we found ourselves back to relying on just a small group of donors, which was never a sustainable model. However, this situation is not specific to ourselves, as we are seeing many micro-charities like us closing every year due to an increase in operational costs and a decrease in donations -both from corporates and individuals.

 

However, when one door closes, another opens, and what comes next will surely encourage our active members. As our treasurer and my fellow trustee, Damian Haywood, so eloquently described, this transfer of services to Unique marks the natural end of one legacy and the birth of a new one. We have achieved what the organisation was originally set up to achieve, and we have taken it as far as it could go. Moving to a much larger organisation with more resources and a wider selection of dedicated professionals means current families and newly diagnosed families will continue to have access to the much-needed support and expertise that has always been available.

 

Unique will maintain a website for the Cri du Chat community and will maintain the current Facebook group. Unique is a UK-based charity who helps families and professionals navigate the world of chromosome and gene disorders. Alongside this, Unique provides accurate and accessible information to empower those looking for answers. Unique have worked with CDSG and signposted families to us over many years and already have a number of CdC family members from around the world.

 

Sarah Wynn, Unique’s CEO extends the following welcome:

“While we are enormously sad to see the standalone CDCSG charity come to an end, we want to reassure any CdC family that there is a home for you here with us at Unique. We are delighted to welcome all of you into our worldwide community of people impacted by rare chromosome and gene disorders (of which CdC is one). We know that navigating life with a child with a rare condition can be a unique and sometimes isolating experience, so Unique is here to provide a sense of community and to help families connect with others. We can’t wait to get to know you all, hear your stories and to continue the amazing work of CDCSG in supporting all those affected by CdC. If there is anything we can do to help or if you have any questions please email me (sarah@rarechromo.org)”

 

Members will be able to join a transition committee and, once completed, can choose to continue to be part of an ongoing support committee for CdC in the same way that there are support committees for other rare genetic conditions that Unique provide support for. Damian will be heading up these committees and is the person to liaise with should you wish to volunteer your time to support and contribute to the transfer.

 

You will need to individually sign up to Unique as per GDPR and our policies as governed by our constitution. 

 

To sign up, please email help@rarechromo.org or sign up online: https://rarechromo.org/join-us/

 

It is at this time that I am announcing that once the legalities of the organisation’s dissolution have been completed, I will be stepping away from these committees. After being Chairman for the best part of seven years, it has been an absolute privilege to have worked so closely with the committee and to have met so many individuals with Cri du Chat Syndrome and their families. It has been a very emotional period for me personally, dealing with the guilt of feeling like I have let so many people down, but I also take immense pride in the faith that many people placed in me and my committee and in the things we achieved during some incredibly difficult years. Managing the lockdown through Covid, establishing stronger relationships with Unique and the Genetic Alliance, and being a voice on a coalition of charities set on altering, or maybe defeating, the Down Syndrome Bill (now Act) will remain high on my list of personal achievements.

 

There are so many people over the years who I would like to give recognition and thanks to but in particular we would like to recognise past committee members. There are so many, so I apologise if I have missed anyone off the list, and in no particular order:

• Our former patron Jo Whiley, whose sister has Cri du Chat Syndrome and has raised awareness of the condition publicly. 
• Our late patron John Miles, whose royalties from his song “Angels” – written for his daughter Tanya but dedicated to his Grandson Marcus – has supported us since its release in 2013. 
• Ann Wilson – the founder of the Cri du Chat [Syndrome] Support Group. 
• Ray Clarke (former Chair) 
• Darren Ayres (former Chair) 
• James Smith, 
• Caspar Hull, 
• Louise Hull, 
• Angie Stokes (former Chair), 
• Rich Bates, 
• Harry’s Fund, 
• James Black, 
• Tanya Walker, 
• Pippa McIntyre
• Elaine Precious.

 

The current and most recent committee members: 

• Damian Haywood (Trustee) 
• Ben Cardwell, 
• Vicki Roberts, 
• Heidi Wattam, 
• Jamie Sparkes, 
• Joanne Edge, 
• Matt Goldsmith 
• Emma Weaver.

 

And extra-special thanks to our long-standing administrator Lucy Santos, without whom our organisation could not function, as her dedication, professionalism, and passion are unmatched by anyone I have ever met. Even when her career as an award-winning and soon-to-be world-renowned Author flourished, she remained with us, voluntarily offered furlough during the Covid years, and has always kept me on my toes. She has become a lifelong friend to me, as she has to so many people in our Cri du Chat families.

 

So, on this day, 5th May 2025, the International Cri du Chat Syndrome Awareness Day, I thank you for the love, support, and involvement you have had with us for over 40 years, and I look forward to the exciting support opportunities with Unique.

 

Sincerely,

 

Martin Roberts, 

Chairman.