Media and Publications

2024

Improving Care for People with Usher Syndrome

child with Usher syndrome
In the February 2024 edition of Mivision, researchers Associate Professor Lauren Ayton, Associate Professor Karyn Galvin and Emily Shepard share the latest insights into Usher syndrome. In the article titled “Improving Care for People with Usher Syndrome”, we cover diagnosis, management and what the future looks like in terms of ongoing research.

 

UsherKids Australia celebrates 10yrs!

Harry and Louis
In the February 2024, UsherKids Australia celebrates an incredible milestone with the 10 year anniversary of the first meeting of co-founders Emily Shepard and Hollie Feller.  In celebration of Rare Disease Day this 29th February, the Genetic Support Network looks back on their contribution to helping the organisation set up and the support groups’ continued success.
In 2013, Hollie and Daniel Feller stumbled upon a seemingly inconsequential article about a young boy with Usher syndrome, a rare genetic disorder that causes vision and hearing loss. As they researched the condition, they discovered their own Ashkenazi Jewish heritage put their son at risk. Desperate for support and information while they investigated genetic testing to confirm their worst fears for their son Harry (just 3 years old), the newspaper article led the Fellers to connect with Emily Shepard and her son Louis also in Melbourne.

2023

Awareness of Usher Syndrome and the Need for Multidisciplinary Care: A Cross-Occupational Survey of Allied Health Clinicians

Discover insights into the challenges faced by individuals with Usher syndrome and their families in accessing comprehensive care. Our research published in July 2023 delves into the awareness levels of allied health clinicians regarding this complex condition affecting hearing, vision, and vestibular function. Findings from our survey of optometrists, orthoptists, and audiologists reveal gaps in understanding crucial aspects such as vestibular dysfunction and interdisciplinary management. With the majority of respondents lacking awareness of key treatment roles and aspects of care within their own disciplines, our study underscores the critical need for targeted education. Explore the full article to learn more about the implications for multidisciplinary care and the importance of raising awareness among healthcare professionals here: 

https://www.tandfonline.com/doi/full/10.2147/JMDH.S411306

 

Clinicians Unaware of Usher Syndrome Impact, Urgent Need for Multidisciplinary Education

Australian Disability Clearinghouse on Education and Training - Information for students with disability

Featured in the US publication Physicians Weekly in September 2023, a summary of our research into multidisciplinary care, highlighting gaps in clinician awareness.  The findings emphasise the importance of educating clinicians, mirroring potential needs for American healthcare providers. The study prompts efforts to enhance awareness and support for individuals with Usher syndrome.

https://www.physiciansweekly.com/clinicians-unaware-of-usher-syndrome-impact-urgent-need-for-multidisciplinary-education/

 

Usher Syndrome Study Emphasises Importance of Multi-Disciplinary Care

Center For Eye Research Australia - Information on Usher Sydnrome

In August 2023 Optometry Australia featured an article highlighting our recent research publication on the need for multidisciplinary care for people with Usher syndrome.  It is essential optometrists remain educated on the latest management practices to ensure the best outcomes for their patients. Read the full article here:

https://www.optometry.org.au/research_surveys/usher-syndrome-study-multi-disciplinary-care/

Focus on Usher Syndrome

Australian Disability Clearinghouse on Education and Training - Information for students with disability

Featured in the September 2023 edition of ACCORD, the official journal of the Australia College Audiology,  an article summarising our research findings on the lack of multidisciplinary care for people with Usher syndrome in Australia. You can read the full article here: 

https://accord.partica.online/accord/accord-magazine-september-2023/flipbook

Vulnerable children to lose classroom support in big cut to specialised teachers

In August 2023, when the Victorian government proposed cuts to the Visiting Teacher Service for children with hearing and vision loss, UsherKids Australia sprang into action. Led by CEO Emily Shepard, our organisation spearheaded numerous advocacy efforts aimed at persuading the government to reverse its decision. Emily Shepard tirelessly engaged in dialogue with policymakers, organised community rallies, and collaborated with other advocacy groups to amplify our message. Through media campaigns, petitions, and direct lobbying efforts, UsherKids Australia worked diligently to highlight the critical importance of the Visiting Teacher Service in supporting children with sensory impairments. Our collective advocacy efforts underscored the invaluable role these services play in fostering inclusivity and equal opportunities for children across Victoria.

In a remarkable testament to the power of advocacy and community mobilisation, the concerted efforts of UsherKids Australia, alongside other stakeholders, yielded a significant victory. Through unwavering determination and strategic advocacy, the decision to cut funding for the Visiting Teacher Service for children with hearing and vision loss was successfully overturned. Emily Shepard’s leadership and the collective voice of UsherKids Australia played a pivotal role in this triumph, ensuring that the essential support provided by the Visiting Teacher Service remained intact for vulnerable children across Victoria. This successful outcome reaffirms our commitment to championing the rights and needs of individuals with sensory impairments, empowering them to thrive and participate fully in society.

https://www.theage.com.au/national/victoria/vulnerable-children-to-lose-classroom-support-in-big-cut-to-specialised-teachers-20230802-p5dtb5.html?fbclid=IwAR3zGKb5bdsNEwT46tWG93PCDZuc9fdbFW_tTlI-pNeY3FZZFj_UJGTkwV0

 

2020-2022

Bringing Answers to Children with a Little-Known Genetic Condition

Australian Disability Clearinghouse on Education and Training - Information for students with disability

In May 2021, the University of Melbourne’s publication Pursuit featured a story on UsherKids Australia and their collaboration with the the Melbourne Disability Institute (MDI) Community-Based Research program. The MDI initiative provides research support and evaluates community-based programs that make a difference for people with disability and their families.

The MDI program offers community groups, like UsherKids Australia, a direct link to University researchers – answering questions about a program’s effectiveness and providing data that can be used to improve or grow program services. You can read the full article here:

https://pursuit.unimelb.edu.au/articles/bringing-answers-to-children-with-a-little-known-genetic-condition 

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