Latest News

Hypermobility Syndromes Association Proud to Support the Crowdfund Project

Posted By Donna Wicks, May 29, 2015

CiC Final front cover  “One of my biggest fears is that nothing will come out of my life…. I don’t necessarily want people to know who I am or know what I did….  I just want something to be different because of me.”  Lucy Watts, Author, 21 years

The Hypermobility Syndromes Association is a small UK based charity which support people from all over the world. The types of syndromes the Hypermobility Syndromes Association support are Joint Hypermobility, Ehlers-Danlos, Marfan, Stickler, Pseudoxanthoma Elasticum and Osteogenesis Imperfecta. These are hypermobility syndromes or heritable disorders of connective tissue.

 The Hypermobility Syndromes Association is pleased to support the ‘Courage is Compulsory- accomplishing so much against the odds’ project by Crowdfunder.

 The HMSA’s patron, Kate Monaghan is delighted to be writing the foreword for the collection of 3 stories. One of which is written by Lucy Watts, a lady with Ehlers-Danlos and associated complications.

The other two stories included are equally inspiring and well worth a read.

Take a look at the project  www.crowdfunder.co.uk/courageiscompulsory

banner 2

 

HMSA Glasgow Family Programme – 30th May 2015 Cancelled

Posted By Donna Wicks, May 27, 2015

HMSA Glasgow Family Programme – 30th May 2015

Please note that this event has been cancelled due to only a few people wishing to attend.

The HMSA is a tiny charity which relies on funding from membership or fundraising, and could not cover the cost of the programme without more people attending.
However, the HMSA staff are meeting in June to discuss how to fund and run a programme in Glasgow. Please keep an eye on social media and our website for alternative events.

We sincerely apologise for any disappointment this may cause but would like to reassure our Scottish members that we are committed to working in Scotland and campaigning for better services.

 

HMSA School Campaign

Posted By Donna Wicks, May 26, 2015

 

Many parents, teachers and schools have contacted the Hypermobility Syndromes Association with questions about the hypermobility syndromes (also known as Heritable Disorders of Connective Tissue). Questions range from basic concerns for the safety of the student, to questions about accommodations that meet the needs of students. At the HMSA we decided to do something to address this need and created the HMSA publication, ‘The hypermobile child – a guide for schools’, an invaluable resource for those with Marfan syndrome, Osteogenesis imperfecta, Ehlers-Danlos syndrome, Joint Hypermobility syndrome and Stickler syndrome.

 

SCHOOL CAMPAIGN                What is the plan?

The HMSA would like to see every school in the country equipped with a copy of this highly acclaimed, comprehensive, 32 page guide, but we really need your help to make it happen.

As a charity the HMSA receive little outside funding, we are, instead, reliant on donations and membership fees to fund our work. We are already working hard on your behalf, implementing education programmes for schools, colleges and universities around the country and providing support for parents of children in education through our Education Support Group, but, with limited resources, we can only do so much and many children with hypermobility syndromes are still struggling at school every day.

The HMSA is asking for your help to change this, by carrying out one or more of the following:

Option 1: Instead of buying one school guide for your child’s school, please buy two and donate the spare to another school near you. By doing this you will be raising awareness within the education system and helping other children who may be struggling at school – visit our shop at: www.hypermobilityshop.org

Option 2: Make a donation of £5 – by texting ‘HMSA13 5’ to 70070. The money raised will to go towards sending our education team into schools, colleges and universities across the country.

Option 3: Make a donation of £4 – by texting ‘HMSA13 4’ to 70070. The money raised will allow us to donate HMSA school guides to schools with whom our education team are working, ensuring a much needed source of information and advice is held on school records and understood by staff.

Please, help us to make a huge difference to so many children’s lives.

 

Hypermobili-Tea 4 Charity 2015 (21st – 28th June)

Posted By Ben Cooper, May 15, 2015

ImageIt’s back for 2015! ‘Hypermobili-Tea 4 Charity’ will be taking place between 21st – 28th June 2015 (but you can always chose a date which is more convenient for you!)

You don’t need to organise it all yourself – ask a friend to help out too! So why not hold a tea party for the HMSA?

How do I join and donate?
VMG_Logo_StkSimply click here on Virgin Money Giving  to go to our event page where you can join for free by pressing “start fundraising” on the right of the screen.

Within 48 hours you will then also receive a confirmation email (remember to check your spam!) including bunting and invitations amongst other things to help you get started!

And also click on Tips and Instructions. These maybe helpful too.

And, there is a Competition too!

How do I enter?
Simply take a photograph which shows your “Hypermobili-Tea 4 Charity Event” at it’s best and post it on our Facebook wall or email it to us by clicking here and our judging panel will chose a lucky winner.* click on Terms and Conditions, below.

What can I win?
Prize2015
You could win a beautiful floral cake stand from Joules at John Lewis – the perfect show-piece for your next baking season!

Afterwards
Once you have held your Tea Party, simply count up the donations and pay in at our ‘Virgin Money Giving’ Hypermobili-Tea event page above. Alternatively you can collect up your donations at the end of your tea party and post a cheque to: The Hypermobility Syndromes Association, Sovereign House, 22 Shelly Road, Worthing, West Sussex, BN11 1TU (cheques payable to “The Hypermobility Syndromes Association”).

Questions?
If you have any questions regarding this event, please email Ben Cooper at the HMSA office by clicking here.

Closing date is the 31st August 2015

*Terms & Conditions

 

 

Exam season is upon us again!

Posted By HMSA Editorial Team, May 11, 2015

Good luck to all the Year 10 and 11s taking their GCSE’s, and the Year 6 and 9s taking their SATs, as well as all the Sixth Formers revising for A and AS Levels!exams

Some HMSA tips!

Don’t forget to prep your body as well as your brain!

1. In exams use the tools and strategies you have been given. This may mean using mind maps, pros and cons, rest breaks, a scribe or extra time. Use them so you can achieve your potential.

2. Make sure you sleep well and no late night cramming. Make sure your bed is comfy and your room at the right temperature.

3.Try and have a couple of hours before bed where you do nothing but relax. You can listen to music or have a warm bath or read for pleasure or follow a relaxation app.

4. Exercise…do your physio or go to the gym or go for a walk or do a few controlled stretches . Your body needs to be used physically to prevent feeling too tense and exercise releases hormones which give you a sense of wellbeing.

5. Make sure you eat healthily to feed the brain! Especially have breakfast and lunch as your body and brain need the energy to perform well. Try to eat some protein, carbs and plenty of fresh fruit and vegetables.

6. Ensure you drink plenty of fluids and if you are a POTs sufferer make sure you have any rehydration drinks you need to hand! Try and avoid caffeine as this can increase feelings of nervousness. Caffeine is in tea, coffee, coke or cola, and some of the isotonic (Sports) drinks which are popular. It may seem like a good idea to take a Red Bull but this can increase palpitations and make you feel jittery.

7. Get your bags packed the night before so you don’t have last minute panics in the morning.

8. If your anxiety becomes an issue then try some relaxation techniques. For example; Sit or lay down somewhere quietly, and concentrate only on your breathing, remember to breathe slowly and deeply, in through your nose and out of your mouth. Try not to allow any negative thoughts to intrude by just pushing them away and returning to thinking about your breathing. Do this for a few minutes as many times during the day or evening as you like. It gets easier with practice!

9. If necessary take yourself away from stressful situations or excited friends to concentrate on getting yourself focused before the exam.

10. If you are struggling to cope and feel overwhelmed do not suffer in silence. Talk to your parents or teachers or friends. You will not be the only one who feels like this…up and down the UK thousands of children or teens are going through exactly what you are. Your parents and teachers, or older brothers and sisters, know exactly what and how you are feeling. Talk to them and see what tips they can give you.

11. Remember you can only do your best! Whilst schools are trying to help you achieve your potential now, at the end of the day you can resit exams or take them later in life…so whilst they are extremely important this is not the only chance you have to succeed.

You can also take a look at our kids and teens section: Kids and Teens section. HMSA Members can also join the HMSA Educational Support Official Group run by Jenny Parrish over on facebook.


Disclaimer
The information provided by the HMSA should not take the place of advice and guidance from your own health-care providers. Material in this site is provided for educational and informational purposes only. Be sure to check with your doctor before making any changes in your treatment plan. Articles were last reviewed by our Medical Advisors as being correct and up to date on 5th June 2004.

Please be aware that information posted on the discussion boards is the opinion of the authors and has not necessarily been approved or endorsed by the medical advisors.
Copy Trade Profit zulutrade trading platform Copy. . weight loss supplement reviews . gumtree.com/p/financial-advice-services/esa-phone-number-0843-515-9427/1114662269