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.
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 s…omething 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.
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.
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?
Simply 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.
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”).
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
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.
This week is Osteogenesis imperfecta week!
Osteogenesis imperfecta is a rare condition sometimes known as “brittle bone disease” because it causes fragile bones. Some forms of the condition can also cause joint hypermobility, along with a range of other problems.
This HMSA are proud to offer support to people with this condition as it is a part of the hypermobility syndromes.
OI is currently classified into eight types. This classification is based on the clinical presentation, X-ray findings, bone morphology and DNA studies and is helpful in providing information about prognosis and management. However, the features of different types of OI overlap considerably and it is not always easy to classify individuals.
The clinical features of OI are extremely variable and range from perinatal lethality to individuals with severe skeletal alterations, mobility impairments, and very short stature to nearly asymptomatic individuals with a mild predisposition to fractures, normal stature, and normal lifespan. Read more…