Media Enquiry Centre

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Media Enquiry Centre2018-11-25T15:48:53+00:00

MDA Media Centre


Executive Director Media Kit

Download Executive Director Bio – Boris M Struk Bio – 2018.PDF

Download Concise Bio – BMS Card Profile.PDF

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Boris & Ryan Struk

Boris M Struk

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Who We Are

About MDA

 

Media FAQ


Muscular Dystrophy Australia (MDA) is the peak not-for-profit organisation providing support and hope to members of Australia’s Muscular Dystrophy (MD) community and the people supporting them.

MDA supports the MD community through programs, services and research at the

National Muscular Dystrophy Research Centre (NMDRC) and CINRG located at Murdoch Children’s Research Institute (MCRI) in the Royal Children’s Hospital, Melbourne Australia. MDA is in the top 15 philanthropic donors to the MCRI, having donated over $1.3 million to the MCRI.

More than 20,000 Australians are affected by neuromuscular disorders. Neuromuscular disorders affect 1 in every 625 Australian men, women and children. These debilitating muscle destroying disorders can affect anyone – from young children to mature adults, male or female.

Their common symptom is the progressive and irreversible wasting of muscle, leading to decreased mobility and often a shortened life expectancy. Many children affected by muscular dystrophy will fully rely on the use of wheelchairs by the age of eight and will not reach their mid to late twenties. To date, there is no known cure for Muscular Dystrophy or any of the neuromuscular diseases.

Financial

MDA is funded almost entirely by private and corporate donations, by Trusts and Foundations and MDA’s own fundraising activities, including the Run for Strength Fun Run, National Superhero Week and the ChallengeMD series.

MDA’s accounts are independently audited annually in accordance with State and Federal Legislation and licensing requirements. All past audit results have been fully unqualified, further providing evidence of the sound nature and business principles adopted and adhered to by MDA.

Services

As well as funding research at the NMDRC, MDA provides support, services, access of information and respite to families and individuals living with neuromuscular disorders through a wide range of support programs. These include

  • National CampMDA – MDA’s flagship respite program designed to give children and adults with debilitating muscle-destroying disorders a unique holiday experience. It also provides their primary carers (usually family members and parents) a week-long break. As of September 2017, MDA has hosted 107 Camps and provided more than 600,000 hours of respite and unforgettable experiences and memories for children and adults living with MD.
  • Regular support group social activities, including a weekend respite program OperationMD ShortBreak for children and OperationMD SWAP for adults.
  • Support and information sessions including the annual InformationMD! Seminar and regular Research Update Seminars with staff and researchers from the NMDRC.
  • Day Programs including pamper days, movie nights, winter luncheons, Christmas in July events, art classes, gardening classes, craft days and more.
  • Regular education programs in support of the medical and para-medical community:, including Educate MD, seminars for teachers with students living with MD, support groups for family members and loved ones of someone living with MD
  • Promoting MD through the world’s first MD website The Home of MDAmda.org.au through regular publications, production videos and awareness campaigns.

 

Contact:

Caroline McNeilage

Muscular Dystrophy Australia Public Relations and Communications Manager

Ph: (03) 9320 9555

E: Communications@mda.org.au

 

Boris M Struk

Muscular Dystrophy Australia Executive Director

Ph: (03) 9320 9555

E: Boris@mda.org.au

Boris is a Subject Matter Expert in the field of Muscular Dystrophy and issues around Disability and Health.