Thank you! In 2019 Bloody Long Walkers and their Sponsors helped the Mito Foundation deliver vital research and services, including:
One step closer to future generations living without mito
public release of the Expert Statement and Consultation Report sent to Federal Minister for Health Greg Hunt, announcing the outcomes and recommendations of the NHMRC’s (National Health and Medical Research Council’s) work on mitochondrial donation. The Mito Foundation continues to engage with stakeholders on legalising mitochondrial donation and expects next steps to be confirmed soon.
Greater access to expert led health information
information Days, Mito Connect Calls, Wellbeing Mito Connect Calls and Support Groups held either across the country or digitally.
Increased national awareness of mitochondrial diease
people reached by 392 media articles raising awareness and education of mitochondrial disease during the public consultation on mitochondrial donation. With public support, this potential legislative change would allow Australian families to access mitochondrial donation, a potentially lifesaving IVF technique.
Individualised support for people impacted by mito
outreach calls offered personalised support and advice to members of the mito community including help with interpreting the public health directives to suit unique needs.
Reduced anxiety in the community
cases supported by the new Patient Pathways Program with 85% of participants reporting a reduction in anxiety. Areas of support included the development of treatment plans, referrals and assistance with personal and emergency care plans.
Direct awareness through your involvement in The Bloody Long Walk
people heard about mito through The Bloody Long Walk 2019 which raised $3.5 million to help families affected by mito.
More medical professionals equipped to treat mito
increase in completion of the relaunched Maybe It’s Mitochondrial Disease GP education module for 2020. The medical profession’s improved understanding of mito will increase rates of diagnosis and help thousands of Australians by facilitating earlier access to specialist care and improved symptom management.
An international effort to treat Leigh syndrome
collectively pledged by five international organisations to improve diagnosis, develop treatments and cures, and optimise clinical care for those affected by Leigh syndrome. This exciting multi-year collaboration between the United Mitochondrial Disease Foundation (USA), People Against Leigh Syndrome (USA), Lily Foundation (UK), Mitocon Onlus (Italy) and the Mito Foundation (Australia) is the first of its kind.