Welcome to CVSA UK
We are a registered charity providing information and support to sufferers of
Cyclical Vomiting Syndrome and their families.
Please remember to update us if your email address changes.
Awareness Day
A huge thanks to everyone supporting this. Thanks especially to Olivia Martin (9) and her Mum for raising over £280 at a school event they organised. Thanks so much to both of you!
Fundraising
Emily & Harry Bristow are running the Bath Half Marathon on March 17th and raising funds for CVSA UK. You can support them here, please pass this to friend and family.
NEWS
Mitochondrial DNA can be inherited via the father as well as the mother.
For a very long time it was thought only the mother passed on surviving mitochondria to a child. Recent research is casting doubt on that. This complicates our understanding still further. It is early days but as the finding was controvertial it was repeated, using different methods in different independant labs. It is a major finding for human biology, what it may mean, if anything, for CVS is less clear yet.
Metabolic Cocktail
Dr Boles has been using a mixture of supplements to help CVS and other conditions. His latest supplement mix is now available in the UK... more details later
Available here
Family Day 2019
Saturday 16th November
Birmingham Children's Hospital
Put it in the diary now - all welcome - free to attend - free creche
Family day 2018
Another busy day is over.
Thanks to our speakers, Prof. Paul Andrews, Dr. Osvaldo Borrelli & Jackie O'Kelly.
It was a varied and wide ranging program with something for everyone.
Thanks too to Dr Marcella Pesce for attnding and contributing to the 1-2-1 sessions.
The creche was run by James and Jess, again, and a big thanks to them for volunteering to help us!
We will have write-ups of the presentations in the spring newsletter and we may be able to make some presentation material available soon.
Contact can assist parents and careers of children with disabilities.Adults, please see below.
Jackie has offered to try an help anyone interested in finding out more on benefits you can email her here:
Contact, the charity she works for can be contacted here:
Freephone National Helpline
0808 808 3555
Monday to Friday 9.30am – 5.00pm
Scope may be able to offer some advice to adults
Start Shopping on Amazon Smile and Support CVSA
It is really simple and costs you nothing click on the link below, search for Cyclical Vomiting and choose it, from then on everytime you go to the Amazon site you will be prompted to choose smile and support us, you pay the same price, we don't track purchases or anything else, but we do get a small payment from Amazons profit on the sale.
Smile
EURODIS PHOTO AWARDS
The EURORDIS Photo Award is an opportunity to visually express what it means to live with a rare disease, exploring its many aspects and to share your story with the rare disease community. Open to everybody around the world, last year saw nearly 400 people from more than 50 different countries submitting a photo, with each reflecting the drive of people living with a rare disease worldwide.
Donate
The methods below are just some of the ways you can contribute. These methods have very low admin fees compared to some donation sites. If you plan a sponsored event the BT myDonate is a great way to help us.
Text Donations to CVSA UK
You can donate 1, 3, 5, 10, 15 or 20 pounds by text message.
send a text to 70085 starting CVSA and a donation amount as above
This will be charged at your standard network rate
eg Text CVSA 15 to 70085 to give £15. This text will cost you £15, plus a standard network rate message
Click the logo below to support us via GoFund Me
Supporting CVS
Grace Carmichael is raising funds for CVS by taking part in a Fun Run in Glasgow. Please support her and ask your friends and family to do the same
She has raised nearly £500-thans you!
Jo Hughes is walking the 46miles from Ediburgh to Glasgow to raise funds for CVSA.
You can sponsor her here
Nick Carlton is doing a skydive in support of CVSA UK.
You can sponsor him here
Cook Book to Support CVSA
Bindu Kejriwal has written a cook book and is donating profits to CVSA.
"After my son had been diagnosed and successfully treated, I decided that I wanted to do something to help the organisation that had helped us in our hour of need."
Please email me if you would like to buy a copy. As my costs should now be more than covered by pre-orders, the entire proceeds from all future sales will go to CVSA.
www.whatelsecanieat.co.uk
bindu@whatelsecanieat.co.uk
So far Bindu has raised an amazing £1500 - thanks so much!
AWARENESS DAY March 5th
Thank you to everyone who contributed to last year's Awareness day.
We hope all the CVS societies and supporters around the world had a great day and that we have started something that can only grow and grow and help more and more people.
Have you got your T shirt yet?
Fruit of the Loom brand, heavy cotton. Order from the Awareness page
Organising an event? We now have a MyDonate page where you can collect funds online, link below - its simple to set up and all money raised comes to the charity- no fees applied.
Can You Help ?
We need help with the committee, most roles don't take up much time.
PLease let us know if you can spare some time to help us keep CVSA working for all CVS sufferers.
A description of the roles can be found here
Listen to Dr Sonny Chong on Radio 4
Inside Health
or on catch up
Please consider sending your story and sharing it in our next Newsletter. We really appreciate your input and our members find hearing others experiences very helpful.
Buy Trolley Coins/Keyrings Ribbons and Wristbands to support CVSA
T-shirts can be ordered now! In Stock
see our Awareness Day page
New: CVSA eBook available on the Apple iBook store for Mac, iPad and iPhone- free
Resources
We hear of many sufferers who don't think they are being treated seriously, and struggle to get diagnosis or treatment. Some people have their jobs at risk due to what appears to their employer to be unexplained absences. Parents face the same issue with schoools, when a child has not got a diagnossis they recognise.
Thanks to a member for providing links to some useful resources:
As the UK's only national membership charity for carers, Carers UK is both a supportive community and a movement for change.
For the past 50 years we've been driven by carers raising their voices together to call for change and seek recognition and support.
A charity that provides information, advocacy and advice services across England, offering direct and local support via Professionals and Volunteers.
Our advocacy service is a free and confidential service available to anyone who wants support to make a complaint to the NHS.
Seen a health claim that's too good to be true? Then Ask for Evidence
All medical information on this site has been reviewed by our Medical advisors, shown below, people's individual stories on our Experiences pages are their own views and do not constitute medical advice. Our site contains advertising links that help support the charity. Neither the trustees nor any of our medical advsiers benefit in anyway from these links and have no commercial links to our advertisers.
Dr Sonny Chong Consultant Paediatrician Queen Mary’s Hospital, Carshalton, Surrey
Keith J Lindley BSc (Hons) PhD MB MRCP(UK) MRCPCH UCL Institute of Child Health, Great Ormond Street Hospital
Dr Ishaq Abu-Arafeh, Consultant in Paediatrics and Paediatric Neurology Forth Valley Royal Hospital and the Royal Hospital for Sick Children, Glasgow
Dr Alberto Ravelli Pediatric gastroenterologist and hepatologist Brescia University, Italy Dr Simon Moodie Consultant Gastroeneterologist Epsom & St Helier NHS Trust Surrey Dr Krishnappa Venkatesh Consultant Paediatric Gastroenterologist Alder Hey Children's Hospital Liverpool Dr Maureen Lawson Consultant Paediatric Gastroenterologist Great Northern Children's Hospital Newcastle
The information on this site is provided to help you understand CVS and support sufferers but is not intended to replace any advice from your own health care professional.
Confidentiality
We do not sell or pass on any personal information you may provide us if you contact us to any 3rd party. We maintain a database of membership, members can request paper records are kept and opt out of the database entry.
About CVSA
We are an all volunteer organisation, a registered charity with all funding being provided via the sponsored links on our purchase pages, membership fees and by voluntary donations.
Advertising
Our editorial content is not influenced by the funding sources. Our website hosts sponsored ads and links from which the charity earns a small income, 100% of this income is spent on supporting the charities aims. We don't accept advertising from any adult-orientated material or from advertisers promoting any "treatments" for CVS.
Our website hosts advertising banners only. Advertisement is distinguished by the word ‘Advertisement’
Privacy Policy
We hold data on members for the purposes of sending them newsletters and other charity-related emails. We ask members who in the family has CVS and if the member provides that information we will record that data. We ask members if they would be willing to speak to journalists, and if they agree we will pass their details to a specific journalist for the purposes of a potential article/radio or TV interview. Occasionally we may ask members if they wish to take part in medical research relating to CVS. We will never pass details without asking.
You can ask to be removed from our list at any time and we will completely erase your data. If you wish to see what data we do hold on you please email info@cvsa.org.uk. We never pass or sell your information to any third party without your explicit consent.
This site complies with the HONcode standard for trustworthy health information:
verify here.
| Email info@cvsa.org.uk Page updated: 6-mar-19 |  |
Helpline 0151 342 1660 |
Charity Number 1045723