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When a parent gets the devastating diagnosis that their child has a genetic disease, there is only one thing that determines their future – research.

This Jeans for Genes Day on Friday 4th August, everyday people can help the scientists at Children’s Medical Research Institute to change the future of the 1 in 20 Australian kids living with a genetic disease or birth defect.

For 65 years, the scientists at Children’s Medical Research Institute have been doing cutting edge work and today they are finding treatments and cures for diseases including epilepsy, cystic fibrosis, cancer, devastating metabolic conditions, genetic blindness, and many more of the 6000 genetic diseases that impact kids like Western Sydney kids Abbey or Teddy.

Abbey’s parents received not one, but two diagnoses for their young daughter that changed their lives. First, they were told she was legally blind due to a rare genetic condition that also impacted her kidney. Months later, their worst fears were realised when this condition led to cancer.

“I was devastated,’’ mum Irene said. “I was in that black hole to begin with, and I'd go to sleep, have a nightmare, wake up and feel like this is the nightmare.’’

However, it was research that allowed doctors to link her symptoms to her condition.

“Abbey wouldn't be here without all the research,’’ Irene said. “They had a plan in place already because of what has happened before and all the research that they've done. It's so important to support medical research.’’

Research has also given answers and hope to Teddy’s family. He was diagnosed with a rare neurodevelopmental syndrome that impacts everything from walking to talking.

“You just love your kids, no matter what. We had all the genetic testing you can get while you're pregnant, and I didn't plan to have a child with a disability, but it happened.

“It can affect you out of nowhere like this. You probably know someone who has a condition that is being researched by the team at Children's Medical Research Institute, and they're so close to doing something incredible. We just need to tip it over the edge. And money is the way that more research happens.’’

Gene and stem cell therapies offer some of the greatest hope for families, and the scientists at Children’s Medical Research Institute are leaders in these fields. Associate Professor Leszek Lisowski said helping families is what gets him out of bed in the morning.

“It is a very emotionally demanding job that we do when you meet these families,’’ Associate Professor Lisowski said. “We have this pressure of knowing the impact of our work. But I find it very rewarding to be doing something that matters and that one day may help someone.

“Genetic disease can destroy a child, parents, and a family and trying to change that is very motivating.’’

We can’t find the cures with medical research, and we can’t do the research without your support.

This year there are so many more ways to fundraise for research. If you’d like to get fit, then why not try Sofa to 6km or the Skipping Challenge? If cooking is more your thing, then hold a Bake it Blue event. Of course, there is always the original favourite of Wear Jeans to your school or workplace.

Celebrate the 30th year of Jeans for Genes Day on Friday 4th August. To get involved or donate, visit JeansforGenes.org.au

Or donate to the Western Sydney Business Connection Fundraiser here.

The School of Business at Western Sydney University is excited to announce its launch of Enterprise Xchange, home to the industry and community engagement initiatives and activities undertaken by the School of Business. It is designed to enable knowledge sharing to have real world, positive impact in the communities of Greater Western Sydney and beyond.

The School of Business Enterprise Xchange at Western Sydney University effectively integrates the school’s external engagement offerings, providing a central access point for enterprise and community groups. It will facilitate knowledge sharing and practice across a range of enterprises in Greater Western Sydney while also improving the student experience through providing valuable real-life work integrated learning (WIL) projects and engaging curriculum. Further, the Enterprise Xchange will build new and existing relationships with industry and community groups and build capacity for the School of Business to undertake collaborative research and consulting projects that have real world impact on the communities in GWS and beyond.

Enterprise Xchange will operate across Bankstown, Campbelltown and Parramatta City campus locations, including Enterprise Café sessions to bring enterprise together with School of Business staff to share knowledge and ideas and to facilitate collaboration. Complimentary Masterclasses addressing current enterprise and societal issues will also be on offer to Enterprise Xchange members.

Here at Metallum, we specialise in structural, commercial, technical and precision of all metal materials. Over the last six months, Metallum has been working closely alongside Manufactor. A renowned business, that has recently started a manufacturing site in our local community. We are proud to be a part of their state-of-the-art work environment, creating one of a kind metal designs that are now presented onsite, for all to see. Some of these designs include specialty doors, tables, large signs, large letters, bins and there is much more to come!

If you would like to enquire about our ultra-modern work, please email us at sales@metallum.com.au or call on 0286082187.

The Western Sydney Wanderers invite you to experience the ultimate Hospitality experience in our 30-person Private Suite at Commbank Stadium. This fully catered exclusive shared suite is located just off half-way on level 3 and offers personalised service throughout the event. This offer available for NRL matches featuring the Parramatta Eels and the West Tigers. With all Private Suites sold out for the Parramatta Eels season, this is your last chance to purchase limited tickets in this luxurious Private Suite.

Click here to register your interest for more information and pricing.

Leading accounting and advisory firm William Buck’s dedicated GLOW Charity Night was held on Tuesday, 23 May at Sydney Zoo’s GLOW Festival.

William Buck’s GLOW Charity Night treated Kids and families from many organisations – including Variety Children’s Charity, Ronald McDonald House, Kids West and the Westmead Children’s Hospital Foundation – to an unforgettable night of interactive installations, an after-dark aquarium, accessible rides, food trucks and the appearance of children’s icon Emma Memma.

For many, this was their first light festival experience and for some, their first night out of hospital in months.

“We have been absolutely delighted to host a charity night at Sydney Zoo’s GLOW festival. Spreading happiness to these children and their families aligns with our Changing Lives philosophy and desire to make a positive impact within the local Western Sydney community,” said John Spender, Director, William Buck.

Jake Burgess, Managing Director of the Sydney Zoo said: “We want to make sure that every child has the opportunity to attend a Light Festival. It's heart-warming to see the smiles on kids’ faces and know that we made a difference to their lives.”

The highlight of the night was undoubtedly the surprise appearance of children’s icon, Emma Memma. The beloved entertainer met and greeted the kids, and took photos, bringing smiles to faces and creating memories that will last a lifetime.

Amongst the attendees was Zaharra, a 7-year-old girl bravely battling Facioscapulohumeral Muscular Dystrophy (FSHD). FSHD is a rare genetic disorder that primarily affects the muscles. The disease often leaves a person incapable of blinking, swallowing, eating, smiling, and walking.

Zaharra’s muscles are deteriorating at a rapid rate, she needs a custom wheelchair to support her quality of life. Zaharra’s parents have done two local fundraisers to help fund a chair but have not been able to raise enough money.

With incredible generosity, William Buck and Sydney Zoo, with the support of Sunrise Medical donated a customised wheelchair worth $30,000 to Zaharra. This remarkable donation will have a profound impact on her life, providing newfound mobility and independence.

GLOW at Sydney Zoo is an accessible and inclusive event, designed specifically with no hills or steps for varying levels of mobility, for everyone to have a fun time.

Motivate your team, promote their mental and physical wellbeing, while raising money for vital medical research as part of the Jeans for Genes Sofa to 6k Corporate Challenge.

We’re celebrating the 30th anniversary of the Jeans for Genes and Westmead-based Children’s Medical Research Institute is launching a Health and Wellness Challenge in July, culminating on Jeans for Genes Day, Friday 4th August. This free corporate running challenge is designed to increase morale, collaboration, health, and wellbeing. As well as throw in a bit of friendly competition.

The concept is simple – starting on July 1 and going until Jeans for Genes Day on August 4th.

You and your colleagues can set personal goals and, big or small, feel good when you log your weekly training on the Jeans for Genes Sofa to 6k portal.

The Jeans for Genes online portal will give you access to fantastic training guides written by our partner, Exercise and Sports Science Australia (ESSA). These are designed to support you to reach your goals safely.

All the money raised helps our medical researchers find treatments and cures for the 1 in 20 Australian children living with a birth defect or genetic disease, like cancer. That’s one in every classroom.

Sofa to 6k campaign manager Penny Horsfield said this is an excellent way to bring your employees together for a great cause and work on your fitness.

“We are always being asked by our long-standing supporters how they can be more involved in fundraising for our researchers, and this is a great way to foster team bonding, improve mental health amongst colleagues, and even encourage a bit of fun team rivalry.

“Every dollar raised during the Jeans for Genes Sofa to 6k goes directly to Children’s Medical Research Institute and helps find cures for currently incurable conditions, like childhood cancers, cystic fibrosis, life-threatening metabolic conditions, and inherited blindness. The families of children affected need hope, and they are so grateful to everyone who gets behind this great cause.’’

For more information contact Penny Horsfield at phorsfield@cmri.org.au or call 0402 926 003.

About Children’s Medical Research Institute

Children’s Medical Research Institute (CMRI) is an award-winning state-of-the-art medical research facility dedicated to researching the genes and proteins important for health and human development. CMRI is supported in part by its key fundraiser Jeans for Genes®. CMRI is located at Westmead a major hub for research and medicine in Sydney, NSW Australia, and is affiliated with the University of Sydney.

Register now: fundraise.jeansforgenes.org.au/sofa-to-6k

What does this year’s Federal Budget means for middle-market businesses and individuals?

While cost-of-living relief was the centrepiece of Treasurer Jim Chalmers second Federal Budget, other measures aim to increase affordable housing and healthcare access, address the national skills shortage, support our shift to clean energy and support small businesses.

We’ve analysed the announcements that matter most and identified five key take-outs for SME businesses.

Click here for Federal Budget Analysis 2023 - William Buck Australia

Government departments need to look beyond traditional service delivery models; yet, can be hamstrung by a bureaucracy that can often be considered cautious and conservative at best, slow and reluctant at worst – while the private sector is generally quicker to adapt to citizen expectations. As with most things, some nations do it better than others. The United Nations e-Government Survey 2022 found that, while some developed nations have surged ahead in the digital age, others are lagging behind.

WorkZone, developed by KMD, an NEC group company, is based in Denmark and boast 40 plus years of achievement and trust with Danish central and local governments. This partnership has supported the Danish e-government in its #1 global ranking by the United Nations for the third consecutive time. The Digital Cities Index was developed by the Economist Impact and measures connectivity, comprehensive digital transformation and scales programs like WorkZone against indicators of digital infrastructure, quality, and affordability. Such services are underpinned by strong probity and security debates which are essential for improving community trust and maintaining the integrity of the product itself.

Indeed, digitisation should not be about technology for technology’s sake. Rather, it must genuinely help people create cohesion by providing oversight over their own data.

In line with the Digital Cities Index 2022 strategy, WorkZone is deliberate about its engagement and its identification of problems that technology could be used for, while identifying potential risks ahead of time. The public sector is responsible for providing essential services to citizens. The delivery of these services requires a considerable network of people and resources, which can be daunting to manage collaboratively.

Naturally, in a country as vast and diverse as Australia, the challenge is to ensure sectors of the community are not left out in the digital journey. People in rural and remote areas, the elderly and those from disadvantaged communities require access to essential services in order to receive an equivalent level of customer service.

WorkZone uses agility to cater for changing agency and shifting citizen needs. It is easy to use, accessible on any device, and, importantly, is safe and secure. Given recent high-profile cases of serious and significant data breaches, the demand for secure platforms has never been greater for ensuring public trust and product integrity. WorkZone should be explored for use in Australia, with the potential to significantly accelerate inter-agency data sharing and processing. This can further drive efficient digital services – providing positive experiences and interactions, ultimately leading to a tangible improvement in people’s everyday lives.

The efficiency and productivity of this product relies on the adaptability of both the public and private sectors. This will ensure a highly advanced service delivery expected by Australian citizens in an increasingly digital age. Governments must raise awareness of and adopt new platforms and technologies such as WorkZone. Its application in Australia provides an opportunity to lead the tech sector on both a national and global stage.

NEC has long been a trusted partner for business and governments to connect all Australians to a brighter future. Its integrity, innovation, experience, as well as its heralding in of new platforms such as WorkZone can help governments and businesses alike to strive towards a seamless, secure and efficient future where citizens and consumers are the primary beneficiaries.

Game-changing robotic equipment has been donated to Children’s Medical Research Institute’s Stem Cell and Organoid Facility by the Medich Foundation, which will accelerate research into stem cells, organoids, and human diseases.

Dr Anai Gonzalez Cordero is a leader in the field of stem cell medicine and organoids: mini-organs grown in the dish from lab-grown stem cells. Following a seven-year appointment at University College London, Dr Gonzalez Cordero founded the Stem Cell and Organoid Facility at CMRI in 2019.

Her laboratory team transforms small samples of skin or blood into stem cells, which can be directed to turn into almost any type of cell, and then to form organoids.

“Thanks to the Medich Foundation, Dr Gonzalez Cordero and her team now have advanced technology which enables them to greatly expand their study of organoids derived from a patient’s own cells. These organoids exhibit the genetic disease of the patient – offering a window through which to investigate disease mechanisms and develop new treatments and cures,” said CMRI’s Director, Professor Roger Reddel AO. “This will speed up their work.”

The Medich Foundation was established in 2012 by Roy and Anthony Medich, along with their families, to facilitate their philanthropic activities which have a particular focus on medical research. Their philosophy is that giving back improves both the quality and longevity of lives.

“The Medich Foundation wants to support the communities we invest in,” said Anthony Medich, “and we believe society is only as strong as its weakest members. Supporting this type of medical research will give hope to children and families who are dealing with devastating genetic conditions - hope for effective treatments and cures.”

Over many years Dr Gonzalez Cordero has developed exceptional expertise in generating retinal (eye) organoids. At CMRI she has now expanded her research to include neural (central nervous system), kidney, lung and cardiac cells and organoids.

Organoids speed up the development and testing of new therapies, especially for inherited diseases, but there is an urgent need for large-scale production. With the new robotic equipment’s automated set-up, this will now be possible.

“Stem cells require a lot of daily care,’’ Dr Gonzalez Cordero said. “They must be fed every day of the week.’’

The facility team feed the cells, which are stored in plates. Every day they must also watch to see if any of the cells have grown enough to be transferred into new plates, to continue to grow more cells indefinitely.

Thanks to the Medich Foundation, all that manual work will now be completed by the Hamilton Microlab Star robot. As well as processing the cells, it can also more accurately assess when a cell is ready to be transferred, rather than relying on human assessment.

“This is not only saving us time but it also allowing the process to be more precise and consistent. We are eliminating human error and the risk of contamination. We are now producing a more consistent protocol and a more robust system.’’

Dr Gonzalez Cordero said this gift was creating more opportunities for her team to focus on their research.

“It is really incredible to have this level of support from the Medich Foundation because without them, we wouldn’t have this robot.

“Philanthropy is so important to our work at Children’s Medical Research Institute, and that is especially true for a lab like ours that is working in such a new field. It is very rewarding to think that this astute private organisation sees the potential in what we’re doing.

“Our thanks to Anthony Medich and his family for helping us in our efforts to make the incurable curable and improve the lives of countless children for generations to come.”

About Children’s Medical Research Institute

Children’s Medical Research Institute (CMRI) is an award-winning state-of-the-art medical research facility dedicated to researching the genes and proteins important for health and human development. CMRI is supported in part by its key fundraiser Jeans for Genes®. CMRI is located at Westmead a major hub for research and medicine in Sydney, NSW Australia, and is affiliated with the University of Sydney.