December 2017

 


MERRY CHRISTMAS TO ALL UK 

CGD SOCIETY MEMBERS

Our long standing trustee, Andrew Orchard, reflects on achievements since our last newsletter.

First of all, a big Thank You to everybody who raised money for this year’s Jeans for Genes campaign in September. Every little helps and our share of the income pays for the services the CGD Society provides. Read later how the 2017 campaign went and how you can get involved in 2018.

A big Thank You also to the three excellent member applicants who applied for the new post of Membership Coordinator. I am delighted to report that Claire Jeffries will be joining us in the new year; you can read more about Claire and this role below.

Claire will be encouraging members to fundraise for us and we say a huge Thank You to those who are already doing so. See below for one painful money raising idea and perhaps another if you join a team of riders for RideLondon 2018! Please do get involved.

Looking ahead, our 2018 plans include a Family Weekend in October. More details will follow in the new year but for now hold the date of October 20th weekend. The 2015 event was a great success so we expect places to book up quickly.

Doretta-and-Family

Here is a picture of Doretta and me with our son Dan and his partner Sam together with their daughter Erin and twins Paige and Harper. Dan has X-linked CGD and we know that all of the girls are CGD carriers so the CGD Society will continue to be a vital support group for families like ours for many years to come.

On behalf of the trustees and staff we wish you the best possible Christmas and hope you all have a healthy 2018.

FUNDRAISING

We own the ‘Jeans for Genes’ trademark and the licence fee pays for most of what we do, so how did the day go this year?

Those who remember the first Jeans for Genes day in 1992, will agree that we have come a long way since then. The charity calendar is now packed full of dress up days which is a testament to our great idea but makes fundraising so much more competitive. 

Our sister charity Genetic Disorders UK who run the event for us have triumphed again this year with income levels looking very similar to last year. But we need the membership to get behind the 2018 event and start to turn the graph upwards. The gross income today is only a quarter of the peak years, so we need everyone to push this event. Here’s what you need to know to get your local schools or businesses involved:
  • Jeans for Genes Day – Friday 21 September 2018
  • Wear jeans, change lives 
  • 1 in 25 children in the UK is born with a life-altering genetic disorder. Help us to transform these children’s lives 
  • You can make a difference to the half a million UK children with a life-altering genetic disorder
  • By asking everyone to wear their jeans on Friday 21st September 2018, you could help fund projects that provide nursing care, equipment, activity weekends, online support and counselling
  • And once the jeans are on, there’s so much more you can do. From serving up blue cupcakes to guessing the number of blue sweets in a jar, the more fun you have, the more money you can raise
  • Sign up for your free fundraising pack at www.jeansforgenes.org or call Freephone 0800 980 4800


This looks like a painful way to raise money!

A huge Thank You to Melissa Shearer and family who raised £81.72 by offering to wax anyone for a donation. The event was held at the Maltby Hotel Wetherspoon's pub in September. Great photo!

Melissa’s son has had a BMT in Newcastle in October, so we hope that everything has gone well so far and wish them the best of luck for the future.


Join RideLondon 2018

You may remember that Emma Waller raised over £700 in the RideLondon event in July.

The 2018 event will be on July 29th and starts in Queen Elizabeth Olympic Park, following a 100-mile route on closed roads through the capital and into Surrey’s stunning countryside. With leg-testing climbs and a route made famous by the world’s best cyclists at the London 2012 Olympics, it's a truly spectacular cycle for all involved.

The public ballot entry system for the 2018 event is now open and will close on Friday 5 January 2018 or when 80,000 entries have been received, whichever is earlier.
If you’d like to cycle for us, we encourage you to apply for a ballot place now on 2018 Prudential RideLondon-Surrey100 UK ballot. If you win a ballot place you won’t have to pledge a minimum sponsorship amount!
We also have 8 paid-for charity places available. There is a non-refundable registration fee of £60 including VAT and we ask cyclists to pledge a minimum sponsorship of £500. If you would like to register your interest in cycling for us, please email events@cgdsociety.org for an application form. We will contact you in February 2018 following the results of the ballot for a short interview.

It’s a great event so get your Lycra out of the cupboard and sign up. There is plenty of training time to get fit between now and July so there is no excuse!


Easyfundraising really is that easy. Jackie Irvine, Trustee, explains:

Did you know that whenever you buy anything online – from your weekly shop to your annual holiday – you could be collecting free donations for the CGD SOCIETY. 


There are over 3,000 shops and sites on board ready to make a donation, including Amazon, John Lewis, M & S, Aviva, thetrainline, Vodafone, Netflix, Thomas Cook, Virgin, B&Q, Boots, Tesco’s, Sainsbury’s and many more – it doesn’t cost you a penny extra!

It’s as easy as 1, 2, 3. 

1. Head to https://www.easyfundraising.org.uk/causes/cgdsociety/ and join for free.

2. Every time you shop online, go to easyfundraising first to find the site you want and start shopping. 

3. After you’ve checked out, that retailer will make a donation to CGDS for no extra cost whatsoever! 


There are no catches or hidden charges as the donation is passed on from the retailer, who on average will donate 5% of the costs of your shopping. 


We need as many people as possible to raise funds for the CGD Society so please tell your family and friends. Thank you for your support. The CGD Society will be really grateful for your donations.

YOUR STORIES

Michaela raises awareness of CGD at the Biomedical Sciences Conference in Birmingham

Michaela Burton shared the story of her son Tom's long journey to diagnosis with a large audience at an Institute of Biomedical Sciences conference in September. The Institute of Biomedical Science is the leading professional body for biomedical scientists, support staff and students.

Tom sadly died 3 days before his fourteenth birthday from infections post BMT. Michaela says ‘‘I feel very passionate about telling Tom’s story. He was all for raising awareness of CGD so giving this talk was one way I could honour his memory. Tom had all the classic symptoms of CGD when he was a baby and was misdiagnosed with Crohn’s disease when he was 7 years old. He was finally diagnosed with CGD, p47 phox deficiency, when he was 12 years old but by this time his CGD had taken an immense toll on his body. If by telling his story it can help just one family then it’s worth it, Tom was adamant that no one should have to go through what he had to endure”. You can read more about Tom’s story here.

Thank you, Michaela, for helping raise awareness of CGD and for courageously sharing the history of Tom’s life.


Three-year-old Ally Kim home after gene therapy replacement trial

We are delighted to share the wonderful news that Ally Kim is now home after receiving gene therapy to treat his CGD at Great Ormond Street Hospital. Ally had been in hospital for over six months and as this BBC short film shows he is now enjoying a normal life with his family in Oxford.

Earlier this year the CGD Society reached a global audience in its search for a stem cell donor for Ally. However, despite the donor drive resulting in many more international bone marrow donor registrations, a match wasn’t found. Having gene therapy has given Ally enough functional cells to fight off any major infections and has bought him some time until a donor match is available.

EXPERT INFORMATION

Reminder about annual prescription pre-payment certificates (PPCs)

Please remember that your PPC is not renewed automatically each year. If yours needs renewing then please contact the CGD Society at hello@cgdsociety.org we can then renew on your behalf (at no cost to you) and ensure that it goes to your current address. If you don’t have a current PPC you may be fined so put the renewal date in your diary!
The cost of PPC’s is paid for from our Family Support Fund. Find more information at http://www.cgdsociety.org/services#familysupportfund


A year in the life of our CGD Society Clinical Specialist Nurse – Helen Braggins

We all know what a lifeline Helen is for CGD patients and families and the CGD Society but it’s not until we crunch the numbers that we realise how truly amazing she is.

Over the last year Helen has provided nursing support to 42 affected children and their families, 32 affected adults and 28 X-linked CGD carrier females, 8 children and adolescents undergoing BMT and 2 children and 1 adult undergoing gene therapy. This is in addition to helping CGDS answer medical queries from around the world, developing patient educational materials, educating nurses and doctors about CGD and giving talks at medical conferences. Thank you, Helen, for all that you do.

Helen says ‘The nursing service is an invaluable asset provided by and supported by the CGD Society. It is a unique role with unique challenges, all of which I’m really proud and happy to be a part of.’


For details of the nursing services Helen provides and dates of the adults clinics at the Royal Free Hospital for next year please visit http://www.cgdsociety.org/services.


Frequently asked questions. In this and future newsletters we will share recent queries:

Here are some of the questions the CGD Society has received recently. Simply click on the links for the answers.

  1. I’m an X-linked carrier of CGD and one chronic health issue that I have been living with is chronic constipation and irritable bowel syndrome. Is there is any evidence that bowel issues are a symptom of CGD carrier status?
  2. My son is 5 and has rarely been sick but has lost weight and has had loose stools for about a year. The doctor has found granulomas on his bowel following a colonoscopy and now wants to test for CGD even though no other symptoms are present. Is there reason for concern and is it necessary to do the test?
  3. Have there been any clinical trials of gene therapy for treating patients with the p47phox form of CGD? What were the results and what is the current status of this work?

CHARITY NEWS

Welcome to Claire Jeffries our new Membership Coordinator

Claire is a CGD mum living in Kent who sadly lost her son Kade six years ago at the age of 5. She knows the value of the charity:

“The help and advice received from the charity was at the time our life line. We used the charity’s services on many occasions. Through my loss I want to be able to help other families and to promote the charity to those who need it because living with CGD can be so isolating”. 

Claire is an experienced fundraiser having raised over £1000 in the 5K Run or Dye event in 2015. She is a keen gardener and has a professional career in retail where she has developed her customer service and people skills. 

She starts working with us in January and one of her first tasks will be to ensure that all of your database details are correct, so look out for her first contact with you. She will be in touch via social media, newsletters and at the clinics so you are sure to meet her at some point next year. Welcome aboard Claire.

Follow us on Facebook

Follow us on Twitter

Call us on: 0800 987 8988

Email us at: hello@cgdsociety.org

Write to us at: CGD Society, PO Box 437, Leatherhead, KT22 2JB


www.cgdsociety.org