ozED - Projects

Youth Mentoring Project
General Introduction
ozED is a group that is not only committed to the support of families, which to often falls into the support of parents, but are committed to our young members.

ozED is currently developing a number of projects and strategies that will see our children and adolescent members get great value out of our group.

The projects range from local initiatives though to international projects.  This is an ambitious plan by our group, being a young group.  However, we recognise that by assisting our children and adolescent members we will have a stronger and better future, (and so will our children).

We have a web space (currently being developed by a couple of our younger members.  The web site will be www.youth.ozed.org.au .

The total estimated costing of our youth program would be approximately $10,750.00.

 

Family Camp/Conference (National Project)
ozED recently held there first National Conference at the Derby Hill Blue Light Disco Youth Camp in Maldon, Victoria.

During this conference we had a group, "purple soup" attend at the conference and conduct a therapeutic program for children and young people affected by Ectodermal Dysplasia and their siblings.  The results were fantastic and everyone that participated has come away proud of being a part of the ozED conference.  Some of the young participants have asked "when is the next conference?" and a few were disappointed that it was only two days.

ozED is now developing up a plan for our next conference.  The program for the conference with regards to the youth program will be very similar.  We would be considering utilising the experience and professional services of purple soup.  The program would be run along similar lines, with purple soup and ozED developing the program to ensure that the participants got the most out of the time and that everyone walked away being proud of being a part of ozED.

The cost of this project is estimated at $6,000.00.  

 
Pen Pals (International Project)
ozED is committed to assisting our children and young people to learn about ED from a local, regional, national and international perspective.

ED is a genetic condition that has no cure and will be present for the affected person and their family for life.  This does not mean it is a life sentence.  There are many adult ED sufferers that live a normal life.  It is always difficult however to let the young members know that this will work for them.

ozED in developing a project to see an international database of "pen pals" developed to allow young people affected by ED (either the sufferer or their siblings) to be connected and interact with other like young people around the world.  This is hoped to give a global perspective of ED to all of the participants.

The benefits of this program could be enormous.  It is hoped that the benefits to the young participants will be that they will learn more about their syndrome, hear and be interested in new or different treatments, hear of the success stories of employment and achievement and recognise the ability and benefit of traveling to meet their pen pals or to participate in other National Conferences/Seminars and likewise for people to travel to Australia to attend our conferences.

For this project to be fully enabled ozED would be seeking approximately $3,500.00 for new computer and office equipment to allow this project to run effectively.  This will then allow us to guarantee that the information can be stored on a "non-linked" computer which will ensure that there will be no hacking into the system, loss of data or theft of data/identity.

Youth Teleconference (National Project)
It is planned that a number of teleconferencing programs can be run to allow each young person to "catch up" with people they have met at the conference/family camp.  This will allow the young people to feel less isolated and also allow friendships to be strengthened and developed. 

It is also hoped that this forum will see the development of an ozED - Youth sub-committee (see next project).

The cost of this project is estimated for the 3005/06 financial year that 3 teleconferences would be conducted each at a cost of approximately $300.00 therefore it would need to raise $1,000.00 for this project.

Youth sub-committee (National Project)
ozED would hope to develop a youth sub-committee that would discuss and raise issues affecting the children and young people.  This committee would also be tasked with contributing to the activities of the organisation including conference planning, meetings, fundraising and project development.  It would be hoped that this experience for these participants would include leadership development, communication and interpersonal skills development and a greater personal understanding and acceptance of ED.

The cost of this program would be minimal with the meeting participation costs being expected to be around $250.00 per annum.  It would be expected that eventually this sub-committee would develop plans to ensure they are self sufficient (admin costing).