June 2018

 


Message from your Chair of Trustees

Hello,

We have undergone some changes here at the CGD Society. Caroline Harding has stepped down as CEO to focus on her work for Genetic Disorders UK(GDUK). She has worked tirelessly for the CGD Society over the last seven years,so we owe her a huge thank you for all that has been achieved. I know that Caroline has great affection for the membership, and she will continue to advise and support us while we find our feet.

Meanwhile, Claire Jeffries is firmly established as our charity coordinator and is doing an excellent job keeping in touch with you – our members – and hopefully growing our community. I hope you enjoy her first newsletter in the editor’s chair.

Geoff Creamer
Message from your Charity Coordinator

Welcome to our latest newsletter and my first edition since I became charity coordinator for the CGD Society in January.

I plan to raise awareness of CGD, increase the Society’s fundraising activities and build a relationship with you, our members. I have a strong association with the charity because my son had CGD. We sadly lost Kade seven years ago,and the support we received from the CGD Society was invaluable. 

A keen fundraiser myself, I took part in the London Run or Dye event in 2004.This was a 5k run with various paint stations along the route. I finished the race covered in a rainbow of colours, raising over £1,000 for the CGD Society.Here I am with my friend, Mel, who is rather enjoying covering me in blue paint!

In this edition of the newsletter, the big news is the date for our Family Conference, which will take place from Friday 19 to Sunday 21 October, at the Woodlands Park Hotel, Surrey, England.More details, including how to book, can be found below. The weekend is a fantastic opportunity to meet other families affected by CGD and to learn about the latest medical advances.   

You will also find in this newsletter some frequently asked questions from our members, and the latest news and research announcements about CGD. Plus, some members share their experiences of how CGD has impacted on their lives. Sharing experiences can sometimes help us feel more connected,through our ability to relate to what has happened to others. We also bring you some fundraising ideas and feature Beckkii, who ran in the Colchester Half Marathon, raising valuable funds for us. 

A reminder that Jeans for Genes Day is on Friday 
21 September. The CGD Society relies heavily on income from this event, so please get involved.

Finally, if you would like to share your story or tell us about your fundraising ideas, then please get in touch at hello@cgdsociety.org. 


I look forward to meeting you at the Family Conference.

Best wishes,
Claire


Family Conference Friday 19th to Sunday 21st October 2018 
We are delighted to announce that the CGD Society’s Family Conference will take place at the Woodlands Park Hotel, Cobham, Surrey, from Friday 19 to Sunday 21 October 2018. 

The conference provides the perfect opportunity to catch up on the fast-moving world of gene therapy and BMT; to meet the new CGD Society team and,most importantly, to meet other families and share your experiences. We have a packed programme of lectures by CGD specialist clinicians, and break-out sessions, where you can get feedback on specific issues. The conference is a three-yearly event, so don’t miss it!

The cost is £100 per adult, and children 17 and under go free. The hotel has a range of single, double and family rooms, which will be allocated on a first come, first served basis. For more information on the conference,please click here  


There is always high demand for this event, so don’t delay in booking your place. Please click here

In Memoriam   

We would like to extend our heart felt sympathy to the families and friends of Nia Thomas and Josh Rogers.  Nia, 25, and Josh, 26, sadly passed away in December 2017 and March 2018, respectively. 


They were firm friends who provided invaluable support and help to each other while going through BMT.  They were outstanding and brave in their drive to live full and independent lives;both having to face difficult decisions and situations.

We would like to thank the families and friends of Nia and Josh for their ongoing commitment to raising awareness of CGD. Their continued programme of fundraising has already raised over £15,000 in donations so far.This is such an important legacy to two wonderful young people.

Fundraising

Prudential Ride London 2018


Good luck to Tom’s Green Team who are taking part in this year’s Prudential Ride London–Surrey 100 on 29 July to raise money for the CGD Society. The event will start in Queen Elizabeth Olympic Park, then follow a 100-mile route through London and into Surrey’s countryside. The team are cycling in memory of Thomas, who sadly passed away in 2012 from infections resulting from a bone marrow transplant (BMT) for CGD. Thomas’s mum is part of this amazing team of cyclists. Good luck from all of us here at the CGD Society.

  

 Your fundraising stories 


Huge congratulations and thanks to Beckii, who ran the Colchester Half Marathon in aid of the CGD Society on 25 March, finishing in an impressive time of 2 hours and 51 minutes. Beckii’s nephew, Mason, was diagnosed with CGD in June 2016 and underwent a successful BMT in May 2017.  Beckii’s sister, Emma, said: ‘Beckii did an amazing job as this was her first long distance run.’ The money raised will help us to continue providing help and support to individuals and families affected by CGD. Beckki, I am sure your sister and nephew are very proud of your achievements!


Organise your own fundraising

With so many local, national and global fundraising events in the calendar, there are lots of ways that you can help to raise money for the CGD Society. Here are some fundraising ideas to inspire you: 

International Day of Friendship: 30 July. Organise a get together of your friends and hold a karaoke night with a raffle, a day of pampering with relaxing beauty treatments, or a movie night at your home. There are endless possibilities. Don’t forget to ask for donations. 

Afternoon Tea Week: 14–20 August. This event is a great excuse to get baking and raise money at the same time. Get friends and neighbours involved by asking them to bake too, then sell your delicious cakes and cookies in aid of the CGD Society, either at home or at a local hall.


Make a regular donation 
You can make a regular donation to the CGD Society by setting up a direct debit via our website. It only takes a few minutes to do and the process is safe and secure. Regular donations, however big or small, help us to continue to fund the research and vital support we provide to affected individuals and families.Please visit this page on our website.

Fundraise for the CGD Society while you shop online, using Easy Fundraising. Over 3000 shops take part in the scheme,and every purchase you make earns a donation to the CGD Society without costing you an extra penny.Simply visit https://www.easyfundraising.org.uk/,type ‘CGD Society’ in the ‘Search for a cause’ box, then fill in your details.


The more people who shop via the Easy Fundraising website, the more donations we will receive, so please register and join in!

Send us details of your next purchase and we will salute you in the next newsletter! 

Frequently asked questions


Q. Can people with CGD have a lung transplant?
A. A lung transplant is possible for people with CGD, although it has been used rarely to help with lung problems. As far as the CGD Society is aware,there have been lung transplants carried out on two CGD patients in the USA.One patient was a 51-year-old man with CGD, who had a double lung transplant in 2008. Post-operatively, he had severe pneumonia. He recovered and did well, but sadly died two years later.The second patient also passed away, but we have no information on the out come of the transplant or the cause of death.

Q. Do teeth cavities in people with CGD often lead to abscesses and infected jaws that need dental surgery, and is this a frequent problem in young children?
A. In the experience of our Medical Advisory Panel problems of the mouth and teeth, with the exception of oral ulcers, haven’t been highlighted as a major problem in people of any age affected by CGD. Our panel advises that owing to the severity of infection, the presence of the bacteria actinomyces should be investigated.Good oral hygiene plays a vital role in avoiding mouth infections and tooth cavities.For advice, visit our help page  

Q. My medical history is complicated. I was diagnosed with Crohn’s disease and had an ileostomy when I was young. I also had a BMT for CGD. Please can you give me advice on travelling as I haven’t been able to go abroad in years.
A. If your BMT has been successful for CGD, then there is no need to declare CGD as an existing condition, but you should declare any other medical conditions you may have. This web page  gives an overview of what you should consider and a list of insurance companies. The good news is that many, many people travel with health complications and can get insurance cover. Our top tip is to shop around for the best insurance quote.  

Latest News
We understand that when a BMT is mentioned and being considered as a treatment for CGD it can seem very daunting and there may be many questions that you would like answers to. With the help of parents of children who have had a BMT, our team have put together a very informative and helpful guide for those who are considering, or are in the process of, undergoing this treatment. You can download the booklet here.

Alternatively, you can email hello@cgdsociety.org for a copy to be sent to you. A big thank you to those who contributed to this guide.


Research on excessive fatiguein female carriers of X-linked CGD 


Latest research published in the Journal of Clinical Immunology sheds some light on the excessive fatigue suffered by some female carriers of X-linked CGD. Dr Andrew Gennery, senior author on the paper, explains more about the study here


As a carrier of X-linked CGD myself, I found the paper a very interesting read, and it is hopeful that the research opens a possibility of targeted treatment.  

Launch of an electronic handbook on CGD 

An e-book on the various aspects of CGD has been launched. Produced for both medical professionals and families affected by CGD, the resource is written by a team of world-leading experts. It is available online and can be downloaded when you click on this link

NHS England publishes urgent policy on funding for adult BMTs 
Following strong lobbying from the lead BMT centres and the CGD Society,NHS England (NHSE) has published an urgent policy commissioning statement. The policy will ensure equal access to BMT for children and adults who are affected by CGD.   

The need for the policy came to light when the vast majority of individual funding requests (IFRs) for BMTs for adult CGD patients were being refused by NHSE. The urgent policy means that IFRs will be no longer required and clinicians will refer cases to a multidisciplinary expert team (MDT) for review and discussion. 

With this system, it is possible that the MDT may decide that BMT is not the best treatment option for an individual patient. If that happens, are referring clinician might still decide to go ahead but they would need to submit an IFR. However, in these circumstances, NHSE is unlikely to fund the BMT if a national MDT has suggested it is not appropriate. This process is interim until the all-ages policy (see below) has been developed.

In parallel, NHSE has also convened a working group to develop an ‘all-ages BMT policy’, which will eventually replace the urgent policy. Its aim is to ensure that there are no age restrictions on the availability of BMT to CGD patients and patients affected by other immuno deficiencies.   

The all-ages policy will be subject to approval by NHS commissioners,but it is hoped that it will be in place within the next year. However,approval for BMT will not be automatic just because someone has a CGD diagnosis or has CGD with a serious complication. Again, it will be necessary for a patient’s case to be considered and approved by an MDT team.

Geoff Creamer, Chair of the CGD Society, said: ‘This funding issue has been a major concern for several families for over 12 months,so thank goodness common sense has finally prevailed. Well done to Susan Walsh,Caroline Harding and Davina Gray for keeping up the pressure and delivering this result. But we are not there yet. Susan will represent the CGD Society in future meetings of the working group and we await their conclusions. This is also a testament to the value of our charity, where we can promote members’interests and deliver so much.’ 

Privacy policy update
In line with the latest data protection regulations (GDPR), we have updated our privacy policy to explain how we look after and use your personal data. The policy covers both the website and our other communications with you,and it may be updated from time to time as our services evolve, so please review it regularly at http://www.cgdsociety.org/privacy. 

Your Stories
Aydin’s Story 

Carly tells us about her son, Aydin, who was just one day old when he was diagnosed with CGD.
I knew I was a carrier of CGD at 16 years of age, so when I found out I was pregnant, I had a test at eight weeks to determine the sex of our baby. When a scan revealed we were expecting a boy, it was my mother’s instinct that our son would have CGD. We already had one healthy boy, so the chances of having a second healthy boy were very slim. Aydin was born, and the next day it was confirmed that our son had CGD. Although Aydin is my first child with CGD, I have been aware of the condition all my life because my brother, who is 32, was diagnosed at three years of age. I was 18 months old at the time.

Aydin is doing amazingly well, 18 months post-transplant. He is on seven different medications, as well as a fortnightly infusion of immunoglobin. He has recently started nursery and absolutely loves it. He is in a great place now, although, if you look back to April 2016 on his Facebook page, you will see that this was his worst recovery period.

He developed cold agglutinins where his blood counts kept dropping and he had to have repeated transfusions. He also developed nephrotic syndrome,which made him swell like a balloon. Following more treatment with steroids,his kidneys have now recovered, and Aydin’s problems have helped the doctors to understand more about the complications that patients with CGD can have. 


The support we had from both hospitals in London and Birmingham was amazing and we couldn’t have got through it all without them. 


Thank you, Carly, for sharing Aydin’s story with us. We are so glad that Aydin is doing well and enjoying nursery school

 

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