Our Philanthropic Heart: A Hall without Walls

Our Philanthropic Heart: A Hall without Walls

By Carlo Montagner and Bozena Zembrzuski

 

It was three years ago that our family decided we wanted to give and support causes beyond our local community.

After making this decision, we were made aware of the struggles facing the people of Timor-Leste.

While this region is geographically close to Australia – it’s faster to travel by plane from Darwin to Dili than it is to journey between Sydney and Melbourne – the nations are poles apart, in terms of basic services, infrastructure and health and education.

When we first travelled from the capital Dili to the township of Maliana – about a five-hour journey by road – it was glaringly obvious that this community remains emotionally and physically scarred by the country’s battle to achieve independence.

But there was still a feeling of great hope and a determination to rebuild. We could also see that with the right support, young people here could be given an opportunity to really flourish.

 

Maliana

Our attention was drawn to the Don Bosco Technical School, which was established in Maliana to educate both boys and girls in Years 10, 11 and 12 in electrical trades.

It is proudly run by the Salesian Christian Brothers and has been purpose-built to equip young Timorese people with vital trade skills that will benefit the country’s planned gas refinery operations – seen as an integral part of the country’s rebuild.

We were immediately struck by the teenagers on campus. Many of them are from very poor families and travel from many parts of Timor to board.  They have overcome enormous obstacles to acquire an education and take none of it for granted. They are so obviously proud to be at school, praying daily in gratitude for the simple joy of three meals a day, companionship, and the opportunity to learn.

A ‘Hall without Walls’

What they were missing on campus was a place to congregate and shelter. While there were some very basic outdoor recreational facilities, these structures provided no protection from the searing heat and monsoonal rains.

We knew that simple, but solid buildings could make a real difference to the experience of these young people and their teachers.

So, after consulting with the school principal, Brother Marcal, a Salesian Brother, we set about facilitating a build of this “hall without walls” – a structure that would shelter the exposed basketball court and provide a natural hub for community events.

Just weeks ago, we travelled back to Maliana as a family to join the students and local community for the official opening of this building (see main photo above).

We felt so privileged to be involved, and to watch as this school creates its own history.

We were genuinely humbled by the generous hospitality provided to us by this community and consider ourselves lifelong friends.

The building looks fantastic and the project is beautifully aligned with our own philanthropic goals:  it is sustainable for the long term and it has the backing of the Timorese Government.

In addition, the Salesian Brothers have a long history in Timor-Leste and have committed to operating this school for the next fifty years.

We will continue to support this school because we believe it represents the best of what Timor-Leste’s future can be.

There is so much more we can do and are planning for Timor-Leste.

We look forward to providing further updates shortly of another project in the region working with younger children.

 

      




Breast Cancer Awareness Month

Breast Cancer Awareness Month

We know that on average, 1 in 8 Australian women will develop breast cancer. To acknowledge Breast Cancer Awareness Month, we share the story of Paula Beevor, who became the ‘one’ and decided to chase her dream of a new life in Australia. This is her story.

To read full text, please click on the article below.

 




Corporate Support: ST Supports the GI Cancer Institute

ST is a longstanding supporter of the GI Cancer Institute, which saves lives by funding important research into gastro-intestinal cancers, including pancreatic cancer. In a few days, medical oncologist Dr Lorraine Chantrill will walk the Larapinta Trail in the Northern Territory to raise new funds. In this short video, she explains her mission and motivation.

Please click on the following video link to view the video.




Will I Require Chemotherapy?

Wendy Dunstone was diagnosed with early breast cancer and chose to have her tumour tested using the genomic test, Oncotype DX to guide decisions on her treatment.

59 year old Wendy was preparing to embark on the ‘trip of a lifetime’ when a routine breast screening revealed a hidden tumour. “I was feeling the healthiest I had ever felt, probably ever in my adult life,” she recalls. “Then I got a phone call from BreastScreen saying, ‘We want you to come back for another look’. And that’s how it all started really.” Wendy underwent a lumpectomy. Subsequent pathology results revealed a 12 mm tumour that had not spread to lymph glands. In addition, it was found to be hormone receptor positive “although perhaps not as strongly as we would hope”, her surgeon Miss Jane O’Brien remembers. Before treatment decisions were made, Wendy decided to proceed with the Oncotype DX breast cancer assay, which examined tumour tissue from the original surgical specimen. The following video outlines her experience.

To view Wendy’s story, please click on the following video link.

 




Living with Pancreatic Cancer

Linda Wilson is an Australian mother, wife, grandmother and nurse who was diagnosed with pancreatic cancer five years ago. She had surgery, but was devastated when her cancer recurred. While she was given just months to live, she has steadfastly refused to abandon hope. She says, “I don’t consider I am dying from pancreatic cancer, I consider I am living with pancreatic cancer.” This is her story.

Please click on the following video link to view Linda’s story.




Our Philanthropic Heart: ST and the Melbourne Coastrek

We are so proud of our intrepid ST foot soldiers, who last week took on the annual Melbourne Coastrek challenge and walked 30 kilometres in the name of charity.

Two teams of ST walkers joined forces to trek along the rugged and spectacular Victorian coastline – a journey that took around 7 hours, large quantities of caffeine and much laughter to complete.

While this was a fantastic team building and bonding experience, an enduring cause is at the heart of this mission.

All funds raised will go to the Fred Hollows Foundation – a development organisation with a simple vision: to put an end to avoidable blindness.

This amazing charity now works in 25 countries around the world and our teams know that sore feet are well worth the effort.

The $6000 raised by the two teams so far is enough to fund a six month education program for a basic eye doctor in Cambodia, or glasses and frames for thousands of children. Even fundraising just $4000 can pay for the training of a cataract surgeon in Laos, who will restore sight to thousands of needlessly blind people.

In line with our company’s commitment to giving, ST has a Gift Matching Program, where all employee donations made to registered Australian charities are matched dollar for dollar (up to $1000 per employee per year) by the company.




Under the Sea

Specialised Therapeutics’ Spanish partner PharmaMar employs a team of dedicated professional divers who are seeking new solutions for cancer, hundreds of metres below the sea’s surface.

We are working closely with our esteemed international partner and have acquired exclusive rights to two cancer compounds of marine origin that are now in late stage development. These compounds may provide new solutions for cancers where there is an unmet need – in multiple myeloma, platinum resistant ovarian cancer and BRCA1&2 mutated metastatic breast cancer, among others.

For a ‘deep dive’ into PharmaMar’s mission, philosophy and expertise, please click on the following video link.

 

 

 




ST Supporting Private Cancer Physicians of Australia

DR HILDA HIGH – PRIVATE CANCER GENETICIST.

While Dr Hilda High was always intent on a career in medicine, her professional life took a few tangents before her true calling again beckoned. Following a dietetics degree and experience in computer programming, Hilda began her medical training relatively late in life, at age 32. Now, at 50, she is among Australia’s telehealth pioneers, after establishing a private cancer genetics clinic in NSW four years ago. Last year she consulted with more than 200 families around the country, sometimes face to face and sometimes remotely. She describes cancer genetics as endlessly fascinating and concedes that working in a private practice has enabled unrivalled flexibility, both personally and professionally. Still, finding her niche has not been without its challenges.

 

Tell us about your career path and how you came to choose cancer genetics?

Medical oncology was something I had always wanted to do, from the day I started as a medical student. Cancer genetics was something I only became aware of in my final year of specialist medical oncology training. And I absolutely love it. There are a couple of reasons I went into cancer genetics instead of medical oncology. I was a sole parent – a sole parent with a young daughter. I did not want on-call, overtime or weekends. And cancer genetics has no medical emergencies. The second reason is, I find it intellectually fascinating as well as being a preventative form of medicine. That it turned out to be suited to Telehealth was a lucky bonus. Basically, it ticks all the boxes for me. The reason I went into private practice was in part, because cancer genetics allowed me to have no on-call obligations.  Also, I found a niche doing telehealth to rural families, something that was relatively easy in private practice but can be complicated to do from a public hospital setting.

 

What would you have liked to know before moving into private practice?

Nobody tells you about the ancillary costs of running your own business.  Things like the IT costs, setting up telephones, organising premises, those sorts of things and the hiring and firing staff: all of the parts that nobody teaches you at medical school.

Many doctors today still don’t understand how their billings work, how Medicare works – because they don’t have to. It gets done for them behind the scenes.

Because I work privately, and because I do Telehealth, I need to understand my own billings and that means understanding Medicare very well. But it’s not something that was ever formally taught.  Understanding how telehealth worked, how billings had to be set up, was essential to establishing a successful private practice.

 

Should advanced trainees have some business training before working in private practice?

I think it should be part of every placement. Advanced trainees should be asking their bosses – working in either public or private practice — what the costs are. Because even if you are a head of department in the public setting, you will still have to deal with a budget, manage staff and deal with software. I think advanced trainees overall tend to concentrate on learning their specialty. I would say to them, ‘you should spend an equal amount of time learning to run a practice, public or private’.

 

So what advice you would give advanced trainees?

One thing that is very helpful is to do a fellowship year or to start by working as a locum, or by somehow attaching yourself to an experienced established oncologist.

I did a fellowship year. This meant spending a year working as a specialist, but still under the umbrella, or the care of a consultant who was running a public clinic. And that was much more useful than when I was a registrar. Towards the end of the year I realised there was no suitable position for me anywhere in Australia given that cancer genetics is a small field.   So, I had to make a decision either to set up my own practice or to find a position as a medical oncologist. That’s when I registered Sydney Cancer Genetics as a business name and committed to setting up my own cancer genetics private practice.

I took a room in an existing and very supportive practice, working for a percentage of earnings.  When I started my telehealth practice, I ran it from a home office. That kept costs low and meant that I wasn’t going to lose money (if you are paying room rental you can earn less than nothing!).

 

What else helped you along the way and what advice would you impart to current advanced trainees?

Mentors.  I strongly recommend all advanced trainees find at least one mentor. They may not be in the same speciality, although that helps and may not be in the same city as you. They are someone who you can bounce ideas off and be supported by.

Another tip:  If possible, it’s great when you are starting out to work for a percentage of your earnings and use the infrastructure of an existing practice – things like their patient database, their transcription service, their billing service. This allows you to find your feet as a consultant and then start to learn the ‘ins and outs’ of running a business.

When you are spending time with different doctors, you are being exposed to different management styles, different practice styles, and different patient software. Even learning how not to do things is useful!

Also, work for someone else first.  Most practices need locums, so while you are doing that, you can be passively or actively acquiring that information.  I have found people are incredibly generous with their time and their support. If you are having problems finding that right person, find a mentor who is not in competition with you. For example, someone who lives and practices in a different state. I am glad I took the time to really learn the behind the scenes things and to really understand every aspect of running my practice.

 

Best thing about private practice?

I think going into private practice is a personality match as much as anything. I could work within the public system, but private practice gives me significantly more personal flexibility such as around holidays and working hours as well as the ability to move the business in new directions to address patient needs and opportunities much more rapidly than I would be able to in the public system.

In my clinic, I am a sole practitioner. The beauty of private practice – if you become too busy, you can employ somebody else to work with you.

 

What does the future hold for advanced trainees, in your opinion?

It is going to be important to find a niche. I think there is going to be an oversupply of specialists wanting to work in large centres.  I think there is going to be a greater push to make public hospital specialists work for billings, which means removing the flexibility of private practice and removing the security and perks (such as annual leave/ super / conference leave etc.) of a public position at the same time. Specific to Medical Oncology, I think the number of treatments and the way we approach cancer is going to continue to change with a much greater emphasis on the molecular genetics of the cancers.

 

Final words? 

I am extremely glad I moved into private practice. I don’t think it is as lucrative as a secure quality position in the public system (if such a thing exists!). But it has given me an amazing amount of freedom and a huge amount of personal and intellectual satisfaction.

 




Endometrial Cancer Trial: Clinical Phase Completed

Aeterna Zentaris Announces Completion of Zoptrex™ Pivotal Phase 3 Clinical Trial in Advanced Endometrial Cancer; Expects to Report Top-Line Results in April 2017

CHARLESTON, S.C.–(BUSINESS WIRE)–Aeterna Zentaris Inc. (NASDAQ: AEZS) (TSX: AEZ) (the “Company”) today announced the occurrence of the 384th death in the pivotal Phase 3 ZoptEC (Zoptarelin Doxorubicin in Endometrial Cancer) study with Zoptrex™ (zoptarelin doxorubicin) in women with advanced, recurrent or metastatic endometrial cancer, representing the clinical endpoint of the study.

The Company currently expects to lock the clinical database and to report top-line results in April 2017. Zoptrex™ is the Company’s proposed tradename for zoptarelin doxorubicin. The proposed tradename is subject to approval by the United States Food and Drug Administration (the “FDA”).

Dr. Richard Sachse, the Company’s Chief Scientific Officer, stated, “We are pleased to announce the completion of the clinical phase of our pivotal Phase 3 clinical study of Zoptrex™, which was conducted under a Special Protocol Assessment with the FDA. Reaching this important milestone took longer than we anticipated because the rate of events slowed significantly during the past year. As previously reported, the study was fully enrolled in June 2015 and the final dosing occurred in January 2016. Therefore, a significant number of patients survived more than 18 months since enrollment in the study. We are thankful that these patients continued to survive a devastating disease and are hopeful that their lives are continuing successfully. We are close to locking the clinical database and are focused on producing the top-line results of the study. Currently, we expect to release top-line results in April 2017.”

David A. Dodd, President and Chief Executive Officer of the Company stated, “With the completion of the clinical portion of this trial, we will now focus on analyzing the data and, if warranted by the results, submitting a new drug application later this year. There is a significant unmet medical need for a treatment for women with advanced, recurrent or metastatic endometrial cancer and we are hopeful that Zoptrex™ will provide clinicians and their patients with an effective therapy for treating the disease. We are indebted to all 512 patients who participated in this important clinical program and, hopefully, we will advance to providing a very important new therapy for this devastating cancer.”

About the ZoptEC Pivotal Phase 3 Trial The ZoptEC pivotal Phase 3 trial was a fully-recruited (over 500 patients), open-label, randomized-controlled study, comparing the efficacy and safety of zoptarelin doxorubicin, a hybrid molecule composed of a synthetic peptide carrier and a well-known chemotherapy agent, doxorubicin, to doxorubicin alone. Patients were centrally randomized in a 1:1 ratio and received either Zoptrex™ (267 mg/m2) or doxorubicin (60 mg/m2) intravenously, every three weeks and for up to nine cycles. Response was evaluated every three cycles during treatment, and thereafter, every 12 weeks until progression. All patients were followed for survival as the primary efficacy endpoint (“EP”). Secondary EPs include progression-free survival, objective response-rate, and clinical benefit rate. The trial is being conducted under a Special Protocol Assessment with the U.S. Food and Drug Administration (“FDA”). For more information on this trial, please consult (ClinicalTrials.gov Identifier: NCT01767155; EudraCT No: 2012-005546-38; ZoptEC: Zoptarelin doxorubicin in endometrial cancer).

About Zoptarelin Doxorubicin Zoptrex™ (zoptarelin doxorubicin), a novel synthetic peptide carrier linked to doxorubicin as a New Chemical Entity (NCE), is the Company’s lead oncology compound. Zoptrex™ is the first targeted oncological therapy using a peptide as the targeting agent and, therefore, it represents potentially a new tool in the treatment of cancer tumors that overexpress the LHRH receptor. The design of the compound allows for the specific binding and selective uptake of the cytotoxic conjugate by LHRH receptor-positive tumors, typically found in gynecological cancers, prostate cancer and some forms of breast cancer. Potential benefits of this targeted approach may include enhanced efficacy and a more favorable safety profile with lower incidence and severity of adverse events, as compared to doxorubicin. Based on the results of Phase 2 studies, the Company believes it may be efficacious for the treatment of ovarian and prostate cancer. If Zoptrex™ is approved as a therapy for endometrial cancer, the Company intends to develop it for these additional indications. The Company has licensed marketing rights to Zoptrex™ to Sinopharm A-Think for China, Hong Kong and Macau; to Orient EuroPharma for Taiwan and Southeast Asia; to Rafa Labs for Israel and the Palestinian territories and to Specialised Therapeutics for Australia and New Zealand.

About Endometrial Cancer Endometrial cancer is the most common gynecologic malignancy in developed countries and develops when abnormal cells amass to form a tumor in the lining of the uterus. It largely affects women over the age of 50 with a higher prevalence in Caucasians and a higher mortality rate among African Americans. According to the American Cancer Society, there will be approximately 50,000 new cases of endometrial cancer in the U.S. alone in 2015, with about 20% of recurring disease.

About Aeterna Zentaris Inc. Aeterna Zentaris is a specialty biopharmaceutical company engaged in developing and commercializing novel treatments in oncology, endocrinology and women’s health. We are engaged in drug development activities and in the promotion of products for others. We recently concluded Phase 3 studies of two internally developed compounds. The focus of our business development efforts is the acquisition of licenses to products that are relevant to our therapeutic areas of focus. We also intend to license out certain commercial rights of internally developed products to licensees in non-US territories where such out-licensing would enable us to ensure development, registration and launch of our product candidates. Our goal is to become a growth-oriented specialty biopharmaceutical company by pursuing successful development and commercialization of our product portfolio, achieving successful commercial presence and growth, while consistently delivering value to our shareholders, employees and the medical providers and patients who will benefit from our products. For more information, visit www.aezsinc.com.

Forward-Looking Statements This press release contains forward-looking statements made pursuant to the safe harbor provisions of the US Securities Litigation Reform Act of 1995. Forward-looking statements may include, but are not limited to statements preceded by, followed by, or that include the words “expects,” “believes,” “intends,” “anticipates,” and similar terms that relate to future events, performance, or our results. Forward-looking statements involve known and unknown risks and uncertainties that could cause the Company’s actual results to differ materially from those in the forward-looking statements. Such risks and uncertainties include, among others, the availability of funds and resources to pursue R&D projects and clinical trials, the successful and timely completion of clinical studies, the risk that safety and efficacy data from any of our Phase 3 trials may not coincide with the data analyses from previously reported Phase 1 and/or Phase 2 clinical trials, the rejection or non-acceptance of any new drug application by one or more regulatory authorities and, more generally, uncertainties related to the regulatory process, the ability of the Company to efficiently commercialize one or more of its products or product candidates, the degree of market acceptance once our products are approved for commercialization, the ability of the Company to take advantage of business opportunities in the pharmaceutical industry, the ability to protect our intellectual property, the potential of liability arising from shareholder lawsuits and general changes in economic conditions. Investors should consult the Company’s quarterly and annual filings with the Canadian and US securities commissions for additional information on risks and uncertainties relating to forward-looking statements. Investors are cautioned not to place undue reliance on these forward-looking statements. The Company does not undertake to update these forward-looking statements. We disclaim any obligation to update any such factors or to publicly announce the result of any revisions to any of the forward-looking statements contained herein to reflect future results, events or developments, except if required to do so.




Julie’s Ordeal with Oropharyngeal Cancer and Oral Mucositis

“I was diagnosed in 2013. Most throat cancers are caused by alcohol and tobacco, but mine was caused by the human papillomavirus (HPV). The primary site was on my tonsils, on the back of my tongue and on the side of my throat. My treatment was 30 consecutive days of radiation therapy. This meant a 20 minute radiation session every day, plus weekly chemotherapy. Basically, when you have radiation, you cook from the inside out. The impact on the inside of my mouth was catastrophic.

I lost over 20 kilograms in six weeks. That is a common issue with oral cancers. I didn’t get tube fed. I kept taking nutrition orally, but was on liquid food for a number of weeks. I was able to keep swallowing enough liquid food to stay alive, basically. The inside of my mouth became very burnt. Under your tongue there are little lines of flesh and they swelled up like great big fingers of swollen soft flesh. My mouth was traumatised. It was very sore inside, I had ulcers, flesh sloughed off. It took a good six months before my mouth was anything close to normal.

These days, I am much, much better, I am back working normally and I eat normally. I lost the capacity to sing, and I used to have quite a nice voice. It’s not my old voice, but I can speak. I am an example of radiation and chemotherapy being absolutely worth the effort.”