Monday, October 25, 2021

In aid of leukodystrophy

Community organisation fund raises for rare genetic disorder

Reading Time: 3 minutesSpiritual organisation Shirdi Sai Sansthan Melbourne Inc has raised $10,000 to help support research, support services and advocacy provided by Leukodystrophy Australia.
This was done via a benefit concert entitled Soulful Rhythms, featuring local youth artists performing Indian and Indo-Western classical songs, dances and compositions. The event was held on 23 September at Wesley College, and attracted over 250 people.

Among the attendees was Sr Julie Thomas OAM, the founder of Leukodystrophy Australia. She noted her appreciation to the organisers and thanked everyone for their support. She launched the foundation in 1992, to provide aid, support and information to patients and families.
Leukodystrophies are a group of rare, progressive, metabolic, genetic diseases that affect the brain, spinal cord and often the peripheral nerves. The diseases are degenerative disorders and lead to a slow deterioration in many of the body’s neurological functions.

There is currently no cure for this life-threatening condition and world-wide research is making advances into earlier detection methods and more accurate diagnoses. Leukodystrophy Australia fills some very important needs, particularly in assisting individuals and families impacted by different types of leukodystrophy.
The President of Shirdi Sai Sansthan Melbourne Inc. Paresh Valob observed, “It is vital that we continue to raise awareness and encourage support for people suffering from leukodystrophy. Leukodystrophy Australia is not a well-known organisation and we need to help its members perform its important functions.”

The event featured budding, developing and accomplished local artists from Melbourne and Sydney who have learned classical songs and dance routines under guidance from renowned teachers and leading institutions in Victoria and India.
The three-hour concert included Bharatanatyam and Mohiniyattam dance numbers, Carnatic vocal and instrumental performances, Hindustani instrumental and Indo-Western fusion presentations. Attendees witnessed performers of all ages demonstrating their soulful and rhythmic musical capabilities.
Graham Watt MP commended the organisers, noting “the vocalists, instrumentalists and dancers all showcased incredible talent.” “It was an excellent well-organised concert,” he added.

The Premier of Victoria, Daniel Andrews MP, who could not be in attendance, penned his praise for the organisation. “I thank Shirdi Sai Sansthan Melbourne for your generosity in raising money and awareness for such an importance cause. On behalf of the Victorian Government, I wish you a memorable and successful evening.”
“I would like to thank all attendees, donors, performers, and volunteers for their efforts to help develop and produce this amazing concert”, Mr Valob noted in his closing remarks. “Leukodystrophy Australia will use the funds to acquire life-support equipment, fund medical treatment for patients and support their objectives,” he explained.
Shirdi Sai Sansthan Melbourne Inc. wishes to encourage other community organisations to host charity events to help those in need with the support they require.
The event was graced by the presence of many dignitaries including Dr Kumudhini and Mr Shan Mugarajah; a representative from the office of John Pesutto MP; Chidambaram Srinivasan, Director of Multicultural Arts Victoria; Emanuele Cicchiello, Liberal for Eastern Metropolitan Region, and staff from Leukodystrophy Australia.
Photos: Minesh Parikh
Leukodystrophy: Fact File

  • Leukodystrophy is a degenerative disease of the white matter in the brain. The word itself comes from the Greek leuco meaning white, dys meaning abnormal and troph meaning growth.
  • There are some forty different types of leukodystrophies, all caused by the imperfect growth or development of the myelinsheath, the fatty covering that acts as an insulator around nerve fibres.
  • Symptoms include Hyper-irritability and hypersensitivity to the environment, and physical signs such as spasticity including muscle rigidity and a backwards-bent head. Ataxia and epilepsy are also common and there could be a decrease in or loss in vision and hearing.
  • Treatment methods have included Stem cell transplants and gene therapy 
  • The 1992 film Lorenzo’s Oil based on the true story of a boy suffering from Adrenoleukodystrophy (ALD), brought much awareness about the condition.
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Carl Buhariwala
Carl is a freelance reporter who has a passion to promote community events, the work of not-for-profit organisations and new ideas. He enjoys meeting people and documenting their work for others to read.

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