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Mobile GP http://www.mobilegp.org.au/default.htm
Who are the Australian Huntington Disease Association ( AHDA) ? The AHDA’s mission is to enable the best possible quality of life for people with Huntington disease, their families and carers, through advocacy, support and education. They rely on government funding and public donations to continue to provide services.
What is Huntington Disease? HD is an autosomal dominant inherited neurological disorder which causes gradual loss of physical, cognitive and emotional abilities. It has a mid life onset between 30-50 years but can affect people as young as 20 years old. HD causes a gradual loss and increasing severity in involuntary and uncontrollable movements, poor concentration and memory difficulties, slurred speech and difficulty swallowing and personality changes such as mood swings and disinhibition. Eventually HD sufferers are confined to a bed or wheelchair, requiring constant care. HD is a cruel disease, being autosomal dominant, often children of HD sufferers know they have a 50% chance of having the same future. Between 7-10 people in every 100,000 have HD. There is no cure for HD.
Why we are supporting AHDA Social justice committee seeks to assist those in the community most in need and often marginalised. Sufferers of HD are often marginalised in society – due to disinhibition and personality changes, caused by damage to the pre-frontal cortex, HD patients can often appear drunk or disabled. They also suffer chorea symptoms which means they have an uncontrolled flail of their limbs and can also be dysarthric, where they are unable to communicate what they want to say. Further to this, they can develop phobias one which can include a phobia to water and so will go extended periods of time without washing. One patient had a phobia about changing her clothes and as a result was in the same clothing for over 18 months until the clothes were actually falling apart whilst still on her body. These behaviours which are often not accepted by society and more so ostracized are a sad reality of a HD suffer and their families. Furthermore HD sufferers are often unable to explain or defend themselves when they are ostracized out in public. Apart from HD sufferers you also have gene positive HD patients who have not yet developed symptoms. These people carry the burden of knowing that their future will involve a decline in their person and a requirement of constant care. They are often the subject of prejudice by carrying a dominant inherited disorder meaning if they choose to have children they have a 50% chance of passing it on. What the AHDA provides is an organisation which offers support, counselling, information and a little bit of fun for HD patients, their families and carers. As a NFP organisation they depend on funding and donations to continue their good work.
What our donation can do Some items desperately required by the WA Association include: 1. New books for their library. Most of the books have to come from overseas and the association has not received any new books for at least 18 months due to lack of funds – the current books in the library are completely out of date with new editions being published since. In order to create a reasonable library so several copies of books are available for clients to borrow would require $3000-4000. 2. The association is also in need of some professional brochures. Currently relying on in house brochures in order to extend the message and information about HD the organisation needs help in this area. Luckily the American organisation for HD has designed brochures already which WA would be able to copy. A grant has been put through via a legal foundation however has not been successful at this time. This project would require approximately $13000. 3. AHDA handbooks – information guides for carers and physicians in order to advise organisations the role of AHDA in managing their HD patients. This project would cost approximately $6000-8000. 4. The AHDA subsidise nutritional supplements to those clients who have difficulty swallowing or who just cannot consume sufficient calories for their needs and who still live at home. People with HD have very high calorie needs. AHDA only charge the client 50% of the cost price and are currently reviewing that due to their cost but a lump sum that would allow us to continue to subsidise them over the long term would be excellent. Any donation would help this project. Aside from these specific projects, all donations will go a long way. Some examples include:
In conclusion, the AHDA is an organisation dedicated to bettering the lives of gene positive, HD symptomatic patients and their families and carers. A cruel and debilitating disease, any funds which could assist any of these projects would impact the lives of many West Australian’s who live each day with HD. |
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