Let's hear your ideas for this site
Email your Young Adults Representative: yarepcgd@gmail.com
My name is Simon and I am 27. I have CGD, and I have become a Trustee of the Chronic Granulomatous Disorder Research Trust, which is very interesting, finding out where the money is spent and how the trust operates.
I have also agreed to be the first Young Adult Rep for this site, basically helping reach out to the 16-25 age group. I will work closely with the web editor and the whole webteam.
We want to make sure this site delivers what you want and that you play an active part in it. The Ed likes getting emails from all ages, but thought some of you might prefer to communicate with someone more your own age.
When the site is up and running you will be able to join up to the CGD forums on various subjects, not necessarily CGD-related. It could be anything to do with life. Please feel free to email me at yarepcgd@gmail.com with any suggestions or ideas to make this site fun and helpful for you.
For Example
How can we help you with daily life? How life changes when you get older – housing, jobs and girl/boy friends. Are you affected by Crohns? Any tips on diet? How to cope mentally with being ill? Friendships? Schooling? College? University life? Degree? Drinking? Social life?
This website needs some ideas to get it going and make CGD a true community so that we can arrange events online. If you or your family is affected by CGD and you have any ideas for day trips in 2007 please email me. In 2006 we ran some very successful trips to Cadbury's World and Alton Towers. It was great to see everyone there. These are fun and paid for by the Trust. I know that there are more people who could attend these trips and we would be delighted to meet you.
Coming up: Confidence Boosting Workshop for the 16+s
This is an event that is definitely worth attending. This will help with difficult aspects of living life with CGD like getting jobs and building up confidence. I will definitely be attending this.
So please help to support the CGD RT website by using it and providing ideas, inspiration, information and stories to get this site up to its full potential. Please email me at yarepcgd@gmail.com
I look forward to hearing from you all soon.
IMPORTANT NOTE :
The information contained on this website is intended only as a guideline, not as a substitute for medical advice. Always consult your doctor if you or your child has any CGD symptoms or concerns.
© 2001-2005 The Chronic Granulomatous Disorder (CGD) Research Trust
Registered Charity No. 1003425 email:cgd@cgdrt.co.uk
The CGD Research Trust is a member of the Association of Medical Research Charities (AMRC), the Genetic Interest Group (GiG) and an associate member of the International Patient Organisation of Primary Immunodeficiencies (IPOPI)
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