$10,000 Community Grant Supports CMT Australia Youth Efforts

$10,000 Community Grant Supports CMT Australia Youth Efforts
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CMT Australia, a charity association aiming to raise awareness and empower people with Charcot-Marie-Tooth disease (CMT) to live their lives to the fullest, has received $10,000 to support the organization’s CMT Aussie Kids youth program.

The Commonwealth Bank Community Grant will support activities for younger CMT patients, as the restrictions caused by the COVID-19 pandemic are slowly lifted, CMT Australia announced in a press release.

CMT Aussie Kids has been running for the past 10 years. It was developed as a way to enable youth with CMT to socialize and bond over adventurous and non-adventurous activities alike, in safe settings and with peers of their own skill level and understanding.

In this way, the organization tries to foster a a sense of belonging and an appreciation of not being alone. A social media community provides year-round support for the in-person networks established at summer camps.

Although the summer camp is open only to children ages 10 and older, the CMT Aussie Kids Program includes other day activities throughout Australia for younger children and their families to participate.

As Australia moves away COVID-19 restrictions, CMT Australia plans to conduct face-to-face activities where permissible and practicable. Activities will address feelings of isolation and seek to provide both diversions and goals.

The Commonwealth Bank Community Grant provides CMT Australia with significant assistance in helping the organization conduct its work for the CMT community both during COVID-19 lockdowns and as people emerge from them.

The Commonwealth Bank awarded 205 such grants to Australian community organizations in 2020.

Other ways the organization helps meet the needs of Australia’s CMT community include focus groups, fundraising, regional coffee and chat gatherings, seminars and other presentations, and by maintaining group representation at professional gatherings.

CMT is estimated to affect approximately one in 2,500 people in Australia and roughly one in 3,300 people worldwide.

The disorder was first described in 1886 by the physicians Jean-Martin Charcot, Pierre Marie, and Howard Henry Tooth. It one of the most common inherited neuropathies (diseases that affect nerve function).

As an inherited disorder, CMT is a lifelong condition, although it is not considered life-threatening. While no cure currently exists, physiotherapy and surgeries can provide some support and several experimental therapies are under investigation.

Forest Ray received his PhD in systems biology from Columbia University, where he developed tools to match drug side effects to other diseases. He has since worked as a journalist and science writer, covering topics from rare diseases to the intersection between environmental science and social justice. He currently lives in Long Beach, California.
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Inês holds a PhD in Biomedical Sciences from the University of Lisbon, Portugal, where she specialized in blood vessel biology, blood stem cells, and cancer. Before that, she studied Cell and Molecular Biology at Universidade Nova de Lisboa and worked as a research fellow at Faculdade de Ciências e Tecnologias and Instituto Gulbenkian de Ciência.
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Forest Ray received his PhD in systems biology from Columbia University, where he developed tools to match drug side effects to other diseases. He has since worked as a journalist and science writer, covering topics from rare diseases to the intersection between environmental science and social justice. He currently lives in Long Beach, California.
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