Dear CGD Society member,

Welcome to the latest news updates from the CGD Society. We hope you have been keeping well. 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.

Please note that we are having some technical issues with our website which we are working on to resolve. If you are asked to refresh the page in any of our links connected to our website, please do press the refresh button which should then take you to the correct page.

As we approach Christmas our thoughts turn to the ones we love and those we may have lost. This year you can take part in our virtual giving Christmas tree where you can dedicate a Christmas tree decoration to someone you love, miss or want to say thank you to. At the same time, you will be supporting us in funding the vital support services we provide the CGD community here in the UK and around the world. 

It's easy to add a decoration to the tree and you can decide how much you would like to donate. You just need to hover over the Christmas tree, click to select what decoration you would like and where on the tree to place it and then make your chosen donation. You can even choose to add the star on the top of the tree.  Please take part through the button below. Thank you. 

A collaboration with UCL (Institute of Immunity and Transplantation) in the UK and medical teams in France matched adult patients with primary immunodeficiencies who had undergone a bone marrow transplant (BMT) to patients with the same disease/medical problems who had not undergone a transplant and looked at their outcomes. It included 20 CGD patients who were each matched to a CGD patient who was not transplanted.

The research paper and a summary of the key findings can be found through the button below.

We know things are difficult at the moment for many families. The rising cost of food and energy bills may be another worry on top of any ill health you may be experiencing. Through the button below, you will find a list resources and information for anyone in the UK who might be struggling with increasing household costs. These resources also include disability energy support. 

Anca L. Szilágyi from the US who has CGD, suffered from a mysterious infection that baffled doctors back in 2001 and lead her to change the course of her life.  Anca’s story can be found through the button below.

Anca L. Szilágyi is the author of the novel Daughters of the Air (Lanternfish Press, 2017), which Shelf Awareness called "a striking debut from a writer to watch." Her second novel, Dreams Under Glass, released from Lanternfish Press in September. Find her at ancawrites.com or on Twitter @ancawrites.

Thank you Anca for allowing us to share your article.

Contact, who are part of the Pears Foundation here in the UK, are holding a series of online workshops for rare conditions. The workshops are FREE for parents and carers. Upcoming workshops:

How to Handle Meetings: Tuesday 6th December at 10.00am-12pm via Zoom 

This online workshop will help you to handle meetings to discuss your child's specialist needs and get the right support for them. You'll learn about preparing for meetings, develop your skills for online and in-person meetings and learn how to feel more confident to help you reach the best outcomes for your child.

To secure your place, book through the button below.

Siblings workshop for parent carers: Monday 9th January 2023 at 10am-12pm via Zoom

This online workshop offers a non-judgemental, confidential space to explore common issues parent carers face with managing the different needs of their children and hear strategies that could help.

To secure your place, book through the button below.

Our charity relies heavily on donations, fundraising and income from Jeans for Genes Day to fund our support services, such as the CGD Clinical Nurse Specialist based at Great Ormond Street Hospital. As we see a decrease in those funding streams, we are collaborating with consultants to diversify our income and apply for funding from trusts and foundations.

Applying for funds is never easy. Many charities are struggling because of the cost-of-living crisis, meaning there are many charities applying at the same time. We have made several applications and are delighted to inform you that so far, we have been awarded the following:

£10,000 from the National Lottery Community Fund. This grant will help us in funding our information and support services for the next year. Those services include our email and telephone helpline and our booklets and guides on CGD. 

£2,000 from The Hospital Saturday Fund to part fund our CGD Clinical Nurse Specialist who is a lifeline to many families and individuals affected by CGD. Helen, our nurse, has also supported many people outside of the UK with medical advice and information.

£5,000 from The Childwick Trust which will also part fund our specialist nurse.


We would like to thank the above funders for their support to help us continue our vital support services to the CGD community.

Do you want to take on a fundraising challenge for the CGD Society but don't know where to start? We have got you covered.

Whether it's by getting active on your feet or a bike, or daring a skydive or wing walk, we would love to help you through your fundraising journey and put your dreams into action. We have put together a regularly updated list of upcoming fundraising events across the UK for you so that you can see all your opportunities in one place. Check out our two pages on our website through the buttons below, and don't hesitate to contact us at hello@cgdsociety.org to let us know about any fundraising plans so that we can support you through the fundraising process. 

We want to give a big well done to Kate on completing her Virtual London Marathon and raising over £450 for the CGD Society!

She completed the 26-mile challenge with the company of friends and family, even her dog Rufus joined her for part of it with their own special marathon badge. We are so proud of Kate for her hard work and grateful for the difference the money she has raised will make to the CGD community. There is still time to support her fundraising campaign 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 this Christmas

Do you want your Christmas presents to have an even bigger feel-good factor?

Thanks to Easy Fundraising and Amazon Smile, purchases you make online for Christmas (or any other occasion) 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 do this for any Amazon purchase simply by signing up to Amazon Smile, or for over 7,000 brands by signing up to Easy Fundraising - get started with both 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 10th December, you also join the chance of winning a Christmas mega prize bundle which includes:

• A huge food hamper containing all your favourite festive treats
• A luxury tree
• Stockings, a door wreath, decorations, lights, bubbly, chocolates

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