The Mito Foundation is fortunate to work with incredible individuals who go the extra mile to support people with mito. Each year we recognise some of those whose exceptional efforts have had a significant impact on the mito community.
Congratulations to the following:
Shelley has been extremely active in the community over the past year. She has led a number of Mito Connect Calls as well as helped launch and run a new monthly Wellbeing Mito Connect Call series. She is a member of the Mito Community Advisory Panel, as well as leading the monthly Digital Tasmania Support Group (recently renamed Digital Tasmania Mito Meet-up). Shelley cares deeply about the mito cause and has actively advocated throughout the entire duration of our campaign to legalise mitochondrial donation. As part of the public consultation into mitochondrial donation, she flew to Melbourne to represent the mito community at the NHMRC's Melbourne Public Forum and has enthusiastically engaged her local MP. Shelley is always willing to share her personal story which became the cover feature story of the nationally syndicated Good Weekend magazine in March and the subject of a live interview on Facebook during Stay in Bed Day in May.
Mia represented the voice of the mito community during her tenure as Chair of the Mito Community Advisory Panel from 2018 until March 2020. During this time, she also led the South Australia Support Group and now is the co-lead of the newly created Digitial Mito Meet-Up group for parents of children with mito. Mia has always been very committed to raising awareness of mito and advocating in support of mitochondrial donation, and generously offers her advice and support to other members of the mito community.
Kat tirelessly raises the spirits of those around her with a unique and inspired outlook on life. She has been so generous and supportive with Noah's time and energy as the Captain of the Mito Movement for The Bloody Long Walk, offering to film videos and take photos that share a glimpse into Noah's life. Kat is always willing to support Noah to openly share his story in media to help raise awareness, including his star appearance on Channel 9 News covering Noah's incredible Bloody Long Virtual Walk challenge - 1km over 10 days! She also uses her social media network to further the cause by spreading that pure fighting spirit that she and Noah share. During this year's Stay In Bed Day, Kat again offered her and Noah's time by joining a live online Q&A for everyone who participated. Ninja is the only appropriate word to convey Kat's determination and courage to fight for the mito cause!
Robyn has proactively advocated for mitochondrial donation over the last year. She has met with several MPs including Leonie Hiscutt MLC for Montgomery who agreed to write to Health Minister Greg Hunt about the community benefits of mitochondrial donation. Robyn continues to seek further meetings to engage politicians and to further our mission.
Abbey has bravely shared the story of her precious son Tyler, who sadly passed away before his third birthday. Her touching story was at the heart of the foundation's 2019 Tax Appeal which raised $50,000 for vital research. She has shared their story across a variety of media platforms including interviews and social media posts. The extent of Abbey's compassion knows no limit as she makes donations (in memory of Tyler) of equipment to families in need and she does Christmas baskets for families with children with disabilities.
The Hoods weave the mito cause into all that they do. Joel and Sarah have actively endorsed mitochondrial donation, they've lead Team Maeve in the Melbourne Bloody Long Walk last year and again this year in The Bloody Long Virtual Walk. They've rallied family and friends to enthusiastically support all their fundraising activities; a testament to the supportive community they've built around them. As a Real Estate Agent, Joel also donates a portion of his commission to the Mito Foundation and uses the platform to build awareness, one household at a time. Joel and Sarah have generously and openly shared their family's story in media to further our awareness and advocacy work, including articles in Kidspot, Herald Sun and on National News.
Referred to as "one amazing woman!" by her nominee, Prof Carolyn Sue AM is constantly praised for her manner and professionalism. She keeps across each patient's history and is quick to respond to their issues. Her nominee mentions that Prof Sue "is a woman who holds so much knowledge and experience that many wish they could replicate. I hope that she is allowed this opportunity to be recognised as much as she deserves as she is the most specialised individual in the mito field in Australia and I have the utmost respect for her and her work with her patients." We extend our sincere thanks to Prof Sue for all the work she does.
At eight years old, Lockie is one of the youngest members of the Bloody Long Walk Virtual Mito Movement. He committed to walk 1km for every $10 he raises and raised $528! His dedication has been positively received in The Bloody Long Walk community and has all helped to further the mito cause.
Manni, 11 years of age, took on The Bloody Long Virtual Walk in support of his beloved cousin Mielle with mito. In Manni's words, Mielle is the best cousin anyone could ask for and his best friend. He raised a staggering $3,500 and continues the family's long-running commitment to the mito cause.
Noah has achieved so much in the past year. He energetically serves as the Captain of the Mito Movement to rally everyone involved in The Bloody Long Walk. He has his own team for The Bloody Long Walk, Noah's Ninjas, that is currently 275 members strong and has raised almost $34,000! He took this year's Bloody Long Walk challenge one step further by ditching his wheelchair and walking 1km in 10 days as part of our new virtual challenge. Noah has also written and published his very own children's book, titled 'Beryl the Ninja Chicken'! Noah has also been the face of our Stay in Bed Day campaign and World Mitochondrial Disease Week. Wow!!!
A group of dedicated students at Trinity Grammar make up The Mitre Committee and have raised over $10,000 for the Mito Foundation in support and memory of Hugh Blunt who attended the school. Their creativity knows no limits as they've successfully fundraised in 2019 by creating and selling the Mitre Cookbook - a cookbook with recipes from the school community. This year they held a Minecraft virtual fundraiser where students competed in challenges in the video game, Minecraft which The Mitre Committee put together themselves.
Margy has volunteered at nearly every Sydney Bloody Long Walk and brings her wonderful sense of enthusiasm, even after many years of volunteering. As a staple of the Sydney walks, Margy is always keen to help. In fact, she was so keen to help out that at the end of the 2019 series she had already booked herself in for 2020!
Melanie has been active in the mito community for a number of years and has recently offered her time and enthusiasm to lead and promote the Digital South Australia Mito Meet-Up group which has been meeting every two months since May 2020. Melanie also volunteers her time as part of the Mito Foundation Risk Committee.
Mel took on the role of Chair of Mito Community Advisory Panel in March 2020. In addition, she is co-lead for the Digital Queensland Mito Meet-Up group and is also the lead for the Digital NSW Mito Meet-Up group. She has been very active in raising awareness of mito and advocating in support of mitochondrial donation by meeting with federal politicians and sharing her story with the media.
Preeti is a sensational member of the mito community who has offered support at every juncture possible. This past year she has led various community awareness activities as well as the Digital Western Australia Support Group and her very first Mito Connect Call. She is co-lead of the newly created Mito Meet-Up group for parents of children with mito. Preeti generously shared her family's story for the 2020 Mito Foundation Tax Appeal and is very active on social media in her quest to support others dealing with grief.
After losing her beautiful baby girl Dot to mito in January 2020 at just 7 months, Suzie has been actively sharing her family's story and helping to raise awareness - with a focus on sharing positivity and inspiration for the community. Suzie admirably rounded up a team for The Bloody Long Virtual Walk while her own family's grief was still incredibly fresh, and continues to help raise awareness by sharing her story with the media.
Dr Ayliff has an interest in chronic illnesses and recently started to see a member of the community, as their GP of twenty years retired. In this short time and despite the restrictions of COVID, Dr Ayliff has become thoroughly familiar with the various aspects of their illness in a way that is very caring, compassionate and reassuring. Dr Ayliff has eased the concerns of this community member by offering a lot of support which has helped with mental and physical wellbeing.
One community member has recently started under Dr Rundle's care and has already stated that they "feel in much safer hands and far more confident about treatment." Dr Rundle offers enough time to understand the needs of her patient and and has always talked through possibilities and treatment options. Throughout COVID she has taken every precaution to ensure her patient concerns are addressed. Dr Rundle has made a world of difference and restored this community member's faith in GPs through her personalised support.
When the Georgio family received the devastating diagnosis and prognosis of their beautiful baby girl Dot - after months of confusing and frightening symptoms, tests and hospital stays - the incredibly supportive community of Lobethal in Adelaide took action. Lee Munn rallied around the town and formed Team Dot which was promptly entered into The Bloody Long Walk in Adelaide in November 2019. This inspirational team of 67 walkers raised over $38,000 to support Australian families affected by mito! Team Dot showcases what community support can achieve - not just in fundraising, but the support they gave and continue to give to the Georgiou family and to the broader mito community!
Congratulations to Nicola for her work on: "Murine cytomegalovirus infection exacerbates complex IV deficiency in a model of mitochondrial disease."
Congratulations to Nicole for her work on: "A patient with homozygous nonsense variants in two Leigh syndrome disease genes: Distinguishing a dual diagnosis from a hypomorphic protein-truncating variant."
Congratulations to Oliver for his work on: "Stress signalling and cellular proliferation reverse the effects of mitochondrial mistranslation."
Congratulations to Lisa for her work on: "The expanding LARS2 phenotypic spectrum: HLASA, Perrault syndrome with leukodystrophy, and mitochondrial myopathy."