“I enjoyed talking to others who have similar conditions. Knowing what they are going through, I can relate to them and I gain as much info from them as I hope they do from me.” AMDF Support Teleconference Participant.
Mitochondrial disease (mito) is a debilitating genetic disorder that robs the body’s cells of energy, causing multiple organ dysfunction or failure. It is terminal, there is no cure and few effective treatments.
The Australian Mitochondrial Disease Foundation (AMDF) funds essential research into the diagnosis, treatment and cure of mitochondrial disorders, and supports sufferers and their families.
The AMDF has recently shifted its strategic direction towards providing more patient support and services which has seen the creation of a number of new initiatives, including the AMDF peer support program, Mito Connect. Generously part funded by James N. Kirby Foundation, this program aims to empower members of the mito community with the relevant resources, knowledge and contacts to make the best of their situation.
This is done through both virtual and face to face support spaces including teleconferences, face to face support groups, a Facebook group, and a support network.
In 2016/17, with James N. Kirby Foundation support, six teleconferences were conducted. Five support groups have taken place across the country and members have kept in touch to organise further meet ups. The support network now has 36 members of the mito community who voluntarily speak with others affected to help support them and share their experiences. The Facebook group has grown to almost 1,000 members and is a safe forum for the mito community to ask questions.
Mito can be incredibly isolating both physically due to disability and emotionally due to lack of knowledge and awareness of the disease. Mito Connect support spaces are a vital service to those affected and often serve to reassure them that others are going through similar experiences.
AMDF is very grateful for the James N. Kirby Foundation’s support.