People with Wolfram Syndrome in Australia and New Zealand
Wolfram Syndrome is a rare autosomal recessive genetic disorder. It is a complex and difficult disorder to diagnose, which means that it is a challenge to estimate the number of affected people in Australia, but most researchers put the incidence of Wolfram at somewhere between 1:500,000 and 1:750,000 people.
Wolfram Syndrome presents with a range of symptoms including Diabetes, loss of Vision and Hearing, Renal problems, Neurological issues and early death. There is currently no cure for Wolfram Syndrome.
WHO WE ARE AND WHAT WE DO
Support for People with Wolfram Syndrome
The Wolf Pack Foundation has been started by a small group of Australians and New Zealanders with Wolfram Syndrome, their families and supporters. The aims of the foundation are to raise funds to provide support for people with Wolfram and to make a contribution to efforts to develop drug therapies and eventually a cure for this disorder. Along the way we hope to raise awareness in the broader community about Wolfram and its impacts.
Overcoming Isolation and Meeting Needs
Rare diseases such as Wolfram Syndrome mean that patients are often isolated and geographically dispersed, making it difficult to access social and material support. The Foundation provides a means for bringing Wollfram patients, their families and supporters across Australia and New Zealand together to share experiences and support each other. The Foundation also aims to assist with the material needs of people with Wolfram Syndrome.
Accessing Information and Medical Support
The Wolf Pack Foundation plans to fund regular Wolfram Syndrome Clinics in Australia. These are opportunities for Wolfram patients to travel to a central location and meet with a multi-disciplinary team of medical specialists in order to access the latest information and treatment options for the disorder. The clinics also provide an opportunity for Wolfram patients to meet together and provide mutual support. While similar clinics have proven very successful in the UK and USA, the costs involved in such travel in Australia and New Zealand are a significant barrier for many patients and their families. The Foundation plans to support patients by providing funding for travel and accommodation.
Educating the Community About Wolfram Syndrome
As you will be aware, fundraising is often a difficult task. Raising funds for a rare disorder such as Wolfram Syndrome presents extra challenges. Few people in the community have ever heard of Wolfram, and even within the medical community there is little easily accessible knowledge or awarensss about the disorder and its impacts. The Foundation therefore aims to raise community awareness of Wolfram Syndrome.
Hunting for a Cure for Wolfram Syndrome
The Foundation also hopes to raise funds to contribute to efforts to find a treatment and eventually a cure for Wolfram Syndrome. Clinical drug trials are on the horizon in both the US and UK and there are a number of promising avenues in genetic research. We hope to make a contribution to the costs involved in these efforts and to ensure that local Wolfram patients are able to benefit from any positive outcomes as quickly as possible.