Your donations are making a substantial difference to people affected by mitochondrial disease (mito). You have enabled services to support patients today, while providing hope for the future by funding research and advocacy. Thank you!
In the second half of 2020, your generous donations have delivered:
Increased Telehealth Support
Your donations helped 46 cases supported by Patient Pathways Program including 21 new clients, with 74% of participants reporting a reduction in anxiety since joining the program.
Patients received help with treatment plans, referrals and assistance with personal and emergency care plans.
Promising New Research
Five new research grants approved for funding to the value of $850,000 which will drive improved diagnosis and investigate promising new therapies while seeking cures.
Access to Vital Health Information
Three Mito Information Days held digitally to allow people with mito in any location to access vital information from leading mito experts. Real-time captioning was introduced to assist the hearing impaired and all sessions were recorded and made available online.
Improved Health Accessibility
Three new factsheets created as part of a Health Information Accessibility project to ensure that our health resources are easy to access, understand and action by people with a range of different needs, abilities and impairments. This is the first step in the creation of a comprehensive Digital Resource Hub.
A Forum for Community Members to Connect
Nine Mito Connect Calls provided a forum for people with mito to connect, share experiences and hear important updates. Five of these focused on emotional wellbeing and were led by a registered psychologist who is personally impacted by mito.
An Exchange Between Leading Researchers in Mito
112 people attended the digital Mito Foundation Symposium Gene Therapies and the Promise for Mitochondrial Disease during World Mitochondrial Disease Week.
Families and medical professionals heard encouraging insights into developing gene therapies from Australian and international experts.
State-based Connections
24 Mito Meet-ups conducted online or in person to help people impacted by mito develop a mutually supportive network with others in their local community. A new Mito Parents Meet-up was launched to connect
parents of children with mito with others facing similar challenges.
Improved Knowledge of Mito for Health Professionals
382 GPs engaged with the relaunched Maybe it’s Mitochondrial Disease educational module marking a 25% increase on the previous launch. Earlier detection of mito and increased rates of diagnosis will help thousands of Australians by facilitating earlier access to specialist care.
Tailored Support
141 cases of support provided to the mito community via the Helpline. Families received information and guidance throughout their diagnostic journey, post diagnosis and some were supported through bereavement.
Over Half a Million People Supporting Mito Families
535,000 people heard about mito through The Bloody Long Walk 2020 national series including the new Bloody Long Virtual Walk. Despite the challenges presented by the COVID-19 health restrictions for public events, the series raised $2.4 million to help families affected by mito.