State Branches


  • VIC Les Jones

    Les is a self-employed consultant who has been working in the financial services industry for the past 28 years. Having a general interest in all good sports; predominantly football, cricket and horse racing, his physical activities are now limited to swimming, which he has done regularly for the past 20 years. Les’s FSHD has dramatically affected his life and the lives of his family.

    Les is married to the gorgeous Claire. They have three beautiful sons, one a sufferer, Kristian, who is no longer with us as a result of FSHD, and three grandchildren, all negative to FSHD. The commencement of the Foundation was one of the happiest and saddest days of my life. Happiest because it represented the shining of a torch at the start of a dark tunnel, and saddest because it hadn’t happened two years earlier, and given our son the hope and strength to continue his eternal struggle with FSHD.

    Les is dedicated to helping the Foundation strive to find a treatment and cure for FSHD. He is one of the driving forces behind the Victorian branch activities, in particular the highly successful Melbourne Chocolate Ball. He is currently the vice president of the Victorian branch, and also an active member of Rotary, Essendon North branch.

  • QLD Leona Luke

    Leona is 37 years old and lives at Tallebudgera in QLD. She was diagnosed at age 26 with FSH.

    Leona has fifteen years’ experience in media and communications. She works for a large engineering firm managing communications and engagement for major infrastructure projects. She still dabbles in Journalism having previously established the Gold Coast NBN TV News Bureau and she was a producer, reporter and newsreader for some of the largest radio and TV networks in Australia.

    But her greatest passion is looking after her beautiful 3 year old daughter Rosie who fills her life with so much joy. She also adores her loving husband EJ and the family daschund/mini foxie “Snoopy”.

    Her greatest dream is to find a cure for FSHD and to one day see her mum (who also has FSHD) go shopping with her for hours on end and to buy those fashionable shoes that they love but can never seem to walk in.

  • WA Claire Anderson

    Claire is 44 years old and lives in Perth, Western Australia with her 15 year old daughter, Sabine. Claire was diagnosed with FSHD at 14 and has been using a wheelchair since 29 years of age.

    Claire has spent the last 15 years working in the Community Services industry in a variety of roles. Her career began with running her Life Coaching business, which involved Life Coaching, Public Speaking, training and advocacy. She went on to lecture at TAFE in the areas of community services and New Opportunities for Women. Then working at Disability Services Commission as a Local area Coordinator.

    Claire spent three years on a Ministerial Advisory Committee to the State Minister for Disabilities and was chairperson for the Community & Family Living panel; leading funding decision for individuals and families with a person with a disability.
    Claire won the People with Disabilities WA Media Award for excellence in multi media for her autobiography, Invisible Opponent, was a category finalist in the Browns Yoghurt Every Woman of the Year awards and nominated for the Human Rights Medal and Awards.

    Claire has spent the last 9 years as an Elected Member for the Town of Victoria Park, 2 of those years as Deputy Mayor.
    Her greatest success and motivation is her daughter Sabine; she is the ‘rock to my roll’. My dream is to find a cure for FSHD so I can feel free and dance with my girl. The Foundation represents that door to freedom.

  • NSW Tanya Spagnolini

    Tania has a background in hospitality and catering and is currently studying accounting. She is also juggling raising her young daughter and simultaneously grappling with the degenerative effects of her own FSHD. She remains optimistic for finding a cure and has been a volunteer for several years for FSHD Global, focussing primarily on fundraising activities.