Aims and objectives | savinglives

What we need to achieve

I'm ashort cut buttons to petition paragraph.

PROJECT 4

.To put funding in to research to get patients diagnosed more quickly.

.Research in to better ways of testing for these conditions, current methods of testing are really not acceptable which is why they are left as a last resort.

.Improving patient care and medication.

PROJECT 3

My aim is to get new awareness packs to all newly diagnosed patients, we were given a few sheets of paper which is not adequate for such a serious condition. I believe some places do this but it needs rolling out to every area. Packs to include

. An identity band

. A red card with relevant information on to give to dr's / paramedics / carers or anyone who finds themselves having to give the emergency injection.

.Car warning stickers / seatbelt clips warning emergency services of an adrenal insufficiant person in the car in cases of accidents who needs to be attended to first.

. A booklet explaining the condition fully.

. A guide for teachers / work colleuges.

. A card listing all medications

. A steroid 'epipen'

. Information of support groups / other parent groups

PROJECT 5

I am sure this is a human rights issue

i need to free my child and others from this bubble

A team of Barristers who specialise in the rights of children are looking in to this current medication. It seems that it is just not viable for any pharmacutical company to make it..... putting this price on peoples lives is not acceptable.

. Pharmacutical companies must by law spend 10 % of thier profit on researching and producing new medicine for rare diseases i am hopoing to make a case for this argument and medication to be carried forward by the legal team.

PROJECT 6

To get as much awareness to this as possible via the media.

we have already had the story in a few papers and are going to feature in the Daily mail at some point with the injection campaign and mollys story,

I am looking at some radio and t.v interviews and have also been invited to write an article for one of Americas leading online news papers. This must be bought in to the open and recognised as much as any other disease / condition. I believe to give the same example if allergy sufferer has their epipen taken from them and replaced with this contraption the out cry would be massive. The result of both causes not having a quick injection is the same . Death. Its not right.

If any person from the meda is interested in PROMOTING / SHARING or telling this story this please contact me on the number below or fill in the contact form.

PROJECT 1

This is the current emergency medication.

If a child / adult were to be involved in an accident they could not release the life saving hormones we need. blood pressure and blood sugar would drop causing unconciousness followed by death if this injection was not administered. This glass vial has to be broken the syringe taken out of its sterile pack, you would then need to draw up all of the medicine inside trying not to add any air bubbles or spill it, the needle is then taken from its sterile pack and attached to the syringe. The injection is then injected intramusculary in to the thigh providing you have manged to take off the trousers of the patient.

I am campaigning for a simple epi stlye pen injection to replace this current emergency kit.

PROJECT 2

Adrenal insufficiancy needs a massive awareness campaign, too many mistakes are made when people with this condition are in a crisis and need to get to hospital. Some of the reasons for signing on both petitions will illustrate to you exactly why this needs to be done, please click the link through to the petitions to read many instances of missunderstanding by medical professionals resulting in dire consequenses there are also links on the facebook page to various unbelieveable stories. We are hoping to put protocol in to all emergency rooms / Dr's surgery, other relevant sites and to have more people trained in giving the injection, this is being discussed along with the injection campaign at one of the countrys leading child health foundations in early febuary