Dear CGD Society member,

Welcome to the latest news updates from the CGD Society. We hope you have been keeping well and are managing to keep warm in this winter weather. 

We are always keen to hear from you, so please do get in touch if you have any news you would like to be featured in future newsletters, or if you would like to be involved in the work we do, by emailing Claire and Niamh at hello@cgdsociety.org or calling free on 0800 987 8988.
 

We have been delighted to read about the Newborn Genomes Programme, which "should spare hundreds of families in England months, or years, of anguish waiting to find out why their children are ill". This really is great news, making the journey that bit easier for families in England who are affected by CGD and other rare diseases. You can read more about it in the BBC news article through the button below.

Aditi Kantipuly, a student doctor, was so inspired by the rare families she met she created "The Zebra Alphabet" .

The book is an excellent read for children with rare health conditions as well as those without. “The Zebra Alphabet” shares the message that we have far more in common than we know.  You can find out more through the button below.

Eurordis, Rare Disease Europe, have produced a new series of podcasts featuring people who live with a rare disease, those who advocate for them and experts on rare disease policies. You can listen to their latest podcast through the button below.

In the next week we will be sending our annual online membership survey to individuals and families affected by CGD from the UK and for those outside of the UK. The survey is designed to help us understand the needs of the CGD community and how we as a charity are addressing those needs. The survey should take no longer than 15 minutes to complete. Your feedback will also help us apply for funding to continue and diversify our support services so please do look out for our survey and complete it if you can. 

If you have any questions on the survey or need support to complete it, please contact Claire at Hello@cgdsociety.org.

Our long-standing trustee, Andrew Orchard, is stepping down from his role as trustee after 32 years. Here is a message from our secretary, Geoff Creamer: 

"Our charity was founded in 1991 and one of our founders is Andrew Orchard. Since then, Andrew has volunteered his time as a trustee. In fact, the time he has dedicated to the CGD Society over the last 32 years amounts to more than 3000 hours of his time, enough to learn a musical instrument or get a private pilot’s licence!
 
In 1992, I met Andrew for the first time along with the late Paul Numan, another founder, as well as Steve Mills, Peter Brown and Rosemarie Rymer. This was a time without emails or internet so our challenge to engage with other affected families required numerous phone calls (landline, of course) and photocopied newsletters in the post. How quaint!
 
When we reflect on the charity's achievements over the last 32 years and how we have supported the CGD community, I hope our members agree that we have delivered an enormous amount. Jeans for Genes has provided crucial funding for the CGD Society and other charities supporting those with rare genetic diseases. The key to these successes is committed and energetic staff and trustees. It is our people who really make the difference and Andrew exemplifies that motivation. Having a family affected by CGD is no doubt his key incentive but his professional ethics and drive are as important. As an IT specialist and a successful businessman, he has found a natural home in many of our projects. During my recent Chairmanship, he was my facto deputy, and I valued his wise council and support.
 
We wish him and his family well as he steps back, and we will keep in touch.  He has stepped down from our Board but will still help us as a volunteer, so he hasn’t quite left us yet. Watch this space for his next project."
 

There have been a few changes to our trustee board recently. After many years, Geoff Creamer has stepped down as Chair and is now volunteering his time and expertise as Secretary, and we welcome Annabel Griffiths as our new Chair.

All of our trustees are volunteers and are passionate about the work we do in supporting the CGD community. You can find out more about our current trustees through the button below.

Are you looking for a way to make a difference this year?

Fundraising or volunteering for our charity will make a real difference to the services we provide to individuals and families affected by CGD across the world.

There are many ways to support our charity's work. Sponsored hike? Quiz night? Barbeque? All of these ideas were used by our supporters last year to raise important money for our charity. If active or thrill-seeking challenges excite you, check out our two pages with countless fundraising opportunities across the UK through the buttons below.

If you or your workplace want to make a difference in 2023, don't hesitate to email us at hello@cgdsociety.org to explore ways you can support the CGD Society. 

We want to say a big thank you to Stuart, who used his creative flare to fundraise for the CGD Society in December by selling mistletoe. We are so grateful for the difference the money he has raised will make to the CGD community. We hope the sweet mistletoe he sold brought lots of smiles to his local community too. He shows that you can make a difference to our charity in whatever way you want, using whichever skills or interests drive you to fundraise.

We are excited for friends Rebecca and Helen as they take on the Worthing Half Marathon in April to fundraise for our charity.

"The CGD society support families affected by CGD and have been helping us since the diagnosis back in October. Any donation will make an impact on support for families affected by CGD all over the world."

You can support their fundraising page as they takes on this impressive challenge through the button below.

There are many ways that you can get involved in supporting the work we do for the CGD community. From volunteering your time to shopping online, every little bit of support from you will help our small charity in continuing the support and information we provide to so many.
 

Support our charity as you shop online

Did you know that whenever you buy anything online – from your weekly shop to your annual holiday – you could be raising free donations for the CGD Society?

Thanks to Easy Fundraising, purchases you make online for over 7,000 brands lead to a proportion of the price being donated to our charity. This is at no extra cost to you, but to the benefit of those affected by CGD. You can sign up and get started through the button below.

Facebook Birthday Fundraisers

Is your birthday coming up? Are you looking for a straightforward way to give back and feel good for your birthday?

You can use your birthday to support the CGD community by creating a Facebook Birthday Fundraiser! It is simple, free and our charity receives 100% of the donations. Just go on Facebook to 'Community Settings', 'Fundraisers' and search for CGD Society as your chosen charity.

Our charity lottery

Join our charity lottery through One Lottery for the chance to win up to £25,000 each week! If you sign up before Saturday 25th February, you also join the chance of winning a whole year of HelloFresh delivered straight to your door.

You can find out more and sign up through the button below.

Support that keeps on giving

Would you like to give continued support to the CGD community? We really value any donation we receive, but regular monthly donations go the extra mile for continuing to help those with CGD. Find out how to make singular or monthly donations for our CGD community through the button below.

Thank you for taking the time to read our news updates. If you have any questions, please do contact Niamh and Claire at hello@cgdsociety.org.

Best wishes,
Claire, Niamh, Helen and Trustees