Welcome to the Hydrocephalus Support Association
Stop Press - Darcy's List, The National Hydrocephalus Registry
During our Conference recently Associate Professor Owler spoke of the need for a national hydrocephalus registry so that treatment for people with hydrocephalus can be improved. It is also a needed first step before research can begin.
On the 21st of March Associate Professor Owler will be meeting with the parliamentary secretary for health, Catherine King to pitch this idea. We need to support him before this date by sending her a letter. A sample is available here
More press on the Hydrocephalus Registry Daily Telegraph Article
- Our Patron Dr Owler pushing for a Hydrocephalus Register on ABC TV & Radio.
- It is with sadness we have to report on another hydrocephalus death, this time in Western Australia, that has been investigated by the coroner. Again it is due to delayed treatment with a finding of misadventure. A very important quote from the parents Richard and Donna Rasmussen,
"DON'T stop shouting and, quite honestly, make sure you've got somebody else there to shout with you.''
An article on the Coroner's findings is available here. The HSA in this case recommends that if the doctors are not listening to you make sure you get a 2nd opinion and more if required.
- Web Forms and paypal payment to join or for the conference launched.
- The HSA is pleased to announce that we will be holding a Hydrocephalus conference on 9th and 10th March 2013.
- It is with sadness we have to report on a hydrocephalus death in South Australia that has been investigated by the coroner. It has been reported in adelaidenow and the full Coroner's Report. The Coroner found that treatment for a shunt failure was delayed and the pressure caused brain swelling that killed her (primary cause of death was Hydrocephalus). The doctors were relying on access to previous scans from another hospital however they were not available in a timely manner. The HSA recommends that if you are going to hospital for shunt failure related symptoms that you take previous scans with you, most importantly you have a scan from when you are well with you so it can be used to compare to scans taken at the hospital.
- Team Jack Weight Loss Fundraising Challenge launched - Click to learn more
Donations to The Hydrocephalus Support Association over $2 are now Tax Deductible - Use the Donate to HSA button on the right or Contact Us if you would like to make one.
Hydrocephalus Support Association
We are a group of people who have hydrocephalus together with their friends and families. We also have the support of a number of specialists and our patrons are neurosurgeons, Professor Robert Jones and Associate Professor Brian Owler. The Association was formed in 1997 and Incorporation took place late in the year 2000.
What are the Aims of the HSA?
- 1. To provide support for all persons suffering from Hydrocephalus and associated illnesses.
- 2. To provide the same support for families, partners and other interested persons associated with sufferers of Hydrocephalus and associated illnesses.
- 3. To share information related to or about hydrocephalus and associated conditions and illnesses.
- 4. To provide forums, news or information networks to discuss the various aspects, treatment or conditions of hydrocephalus and associated illnesses.
- 5. To promote an "awareness of Hydrocephalus" where and when appropriate.
- 6. To aid any research related to Hydrocephalus and associated conditions and illnesses where possible and or practical.
- 7. To do any or all such other things as are conducive or incidental to the attainment of the above aims.
The dream of the Hydrocephalus Support Association. With thanks to the Hydrocephalus Association of the USA.
How are these aims furthered?
- 1. The holding of meetings, lectures, conferences and social gatherings.
- 2. The publishing and distribution of literature in particular a quarterly newsletter.
- 3. The formation of a Buddy Scheme where members can link up with each other by age, condition or location.
- 4. The provision of resource materials such as articles of interest and videos of conferences. A resource guide is provided to all members
- 5. Any other activity as considered by the committee and members as appropriate
Who can join?
Membership is open to any person with the condition of Hydrocephalus or an associated condition as accepted by the committee. Members will also include the family of persons suffering from Hydrocephalus or related conditions.
Membership is also open to professionals and other interested persons.