Annual Report 2022-2023

An overview of the NORTH Foundation, the official fundraising charity partner of the NSLHD, for NSLHD staff.

Contents

NORTH Foundation

From our CEO and Chair

From the NSLHD

Our story

Our beneficiaries

2022 - 2023 in review

2022 - 2023 highlights

NSLHD & NORTH Foundation grants program

Impact of grant funding

Niki & Ange’s story

Researcher spotlight

Thank you

Senior leadership team

Board and Development Committee

How you can support us

Behind the scenes

Financial commentary

NORTH Foundation Fundraising to support innovative health research and the delivery of exceptional patient care within the Northern Sydney Local Health District.

Vision To create a future where our community benefits from quality healthcare and there are no barriers to what can be achieved through innovative medical research and patient care.

Promise We are committed to supporting medical and

Purpose We exist to deliver better patient outcomes for our community by bridging the gap between what is needed today and what is possible tomorrow.

community health services that are there for everyone in the community, throughout their whole lives.

Impact

Innovation

Compassion

Integrity

Collaboration

Core Values

Fundraising Pillars

Research Funding world-class innovative medical research that has a tangible impact on patients’ lives.

Education Funding education and training opportunities for our researchers, healthcare workers and community services staff. Nurture Developing long-term, meaningful relationships with our community and supporters through engagement opportunities and health promotion activities.

Care Improving patient care and facilities through the provision of new health services, patient wellbeing programs and equipment.

From the CEO Gilbert Lorquet

From the Chair Michael Ellies

This year has been a remarkable journey marked by unwavering collaboration and transformative impact led by the invaluable support of our donor community. Our commitment to making a lasting impact across the Northern Sydney Local Health District (NSLHD) has been the driving force behind every endeavour we undertook this year. None of this would have been possible without the steadfast support of our donor community. Your dedication has translated into tangible change, making a real impact where it is most needed. From improved access to technology for our patients, to the beginning of the significant redevelopment of Ryde Hospital, the 2023 financial year saw our biggest impact yet. It is the belief of our donors that propels us forward and reinforces our resolve to exceed expectations. This year has been one of our most successful to date. With your support, we have redefined what can be achieved, fuelling innovation and progress. This year saw the opening of the Manly Adolescent and Young Adult Hospice (AYAH), the first facility of its kind in Australia. A significant project for the district that will have an immeasurable impact on the lives of many young Australians. As we celebrate our accomplishments, we remain firmly committed to bridging the gap between what is needed today and what is possible tomorrow. Through strategic partnerships and a pioneering spirit, we will continue to push boundaries and set new benchmarks. I extend my gratitude to our Board of Directors, Development Committee, and the dedicated NORTH Foundation team. It is with their collective guidance and expertise that has made this year an extraordinary success. This year’s annual report not only highlights the impacts that the donations have had this year, but also serves as a testament to our collective dedication to a healthier, more vibrant community. Together, we have turned challenges into opportunities and aspirations into reality. As we look ahead, let us do so with renewed vigour, knowing that our shared efforts can create a future where possibilities are boundless. Thank you for your unwavering support.

As I reflect on the past year and the impact that the NORTH Foundation has had on enhancing health outcomes for patients across the NSLHD, I’m filled with hope and optimism. I am pleased to report that this fiscal year we raised $11 million, a substantial increase of 34% on last year. It’s a welcome result given domestic pressures on fundraising concerns and following on from COVID-19 and bushfires in 2019 and 2020. It is a testament to our collective dedication, the trust of our donor community, and the tireless efforts of our team. These donations are not just numbers; they represent barriers overcome, possibilities turned into reality and lives enhanced. The NORTH Foundation’s sole purpose is to deliver better patient outcomes. To this end, there are many people we must thank in this pursuit. We express our deepest gratitude to the healthcare staff who work tirelessly on the front lines. Their compassionate care marks the cornerstone of our success. Equally deserving of our gratitude are the medical research staff, many of whom are recognised on a global level for their expertise and discoveries. Their dedication to advancing knowledge and finding innovative solutions to difficult problems is core to the district’s mission and we’re proud to be a major funder of their work. A special commendation is due to the NORTH Foundation team, under the leadership of Gilbert Lorquet. Gilbert’s guidance and commitment to the organisation have been instrumental in significantly increasing both the awareness of the NORTH Foundation and our level of impact. I also extend my thanks to my fellow board members and the members of the Development Committee. Their strategic insights and collaborative spirit have been essential in shaping our journey and bringing us closer to our goals. Finally, it is with great pleasure that I welcome Anthony Schembri as the new chief executive of the NSLHD. Anthony’s wealth of experience, dedication to healthcare excellence and strong philanthropic focus make him a fitting leader and partner for the next chapter of our journey. I invite you to read this report with a sense of accomplishment and excitement. The NORTH Foundation’s journey is intricately woven into the fabric of our community, and together, we are shaping a healthier, brighter future.

Gilbert Lorquet Chief Executive Officer, NORTH Foundation

Michael Ellies, Chair, NORTH Foundation

From the CE of NSLHD Anthony Schembri AM

NSLHD at a glance 2022-2023

229,248 people presented* to our emergency departments

As I step into my first year as the chief executive of Northern Sydney Local Health District, I am excited to work alongside our philanthropy partner, the NORTH Foundation. I am passionate about philanthropy and the value that can be added to our community with the support of generous donors. This annual report highlights the remarkable impact that has been achieved thanks to our donors, supporters, the NORTH Foundation team and our hardworking healthcare and research staff. As a health service we continue to thrive, providing outstanding care for patients and reaching new breakthroughs in health and medical research. This year, we saw the Adolescent and Young Adult Hospice (AYAH) in Manly welcome its first patients, and have an impact on families here in NSW, allowing them a chance at respite as they face challenges most will never have to consider. Thanks to the dedicated staff, supportive community and generous donors, this facility will continue to welcome patients with life-limiting illnesses and their families for years to come. The last year also saw over $500,000 in grant funding provided through the NORTH Foundation, supporting a variety of projects across the local health district. Some of the 17 projects that received funding included an outdoor mobility garden for Ryde Hospital, iPads funded for the Ngalga Ngarra program to support Aboriginal and Torres Strait Islanders who may be feeling isolated when away from friends, family and Country during hospitalisation, and many more fantastic initiatives led by staff around the district. The grants program is made possible by those who donate to the ‘area of greatest need’ which is a vital part of the work carried out by the NORTH Foundation. As I reflect on the successful year that was, I want to take a moment to thank Lee Gregory, acting chief executive for the past 12 months for his work with the NORTH Foundation. I am filled with optimism and excitement as we continue to grow philanthropic endeavours across the district and I look forward to continuing this great work.

23% of emergency department admissions, arrived by ambulance

33,392 operations performed in our hospitals

4,295 babies born in our hospitals

741 babies in Neo-natal Intensive Care and Special Care Units

95.2% of children were fully immunised at one year of age

*Excludes COVID screening presentations

Adjunct Professor Anthony M. Schembri AM Chief Executive, NSLHD

Our story The NORTH Foundation has always been focused on raising funds to improve community wellbeing by supporting innovative medical research, the delivery of exceptional patient care, and health promotion activities. In 2018 the NORTH Foundation was established, and a CEO appointed to create one body to fundraise for the NSLHD hospitals and the Kolling Institute. This streamlined fundraising and put dedicated resources towards fundraising and philanthropy. With a five year strategy in place, an affiliation agreement was put in place between the NSLHD and the NORTH Foundation. This led to quick growth of the organisation as community fundraising initiatives, a senior leadership team and a grants program were all put in place. In 2021 the NORTH Foundation (Health Promotion Charity) gained DGR1 status. Since then, a regular giving program and a bequests program have been launched and the team has rapidly expanded. As awareness of the NORTH Foundation across the district grows, more of our beneficiaries are seeing the direct impact of donations through both tied and untied funding.

Our beneficiaries

Royal North Shore Hospital was established in 1885 and is a major teaching hospital and trauma centre in NSW. The hospital cares for more than 1.1 million patients a year, which equates to one in every five people living in NSW.

The Adolescent and Young Adult Hospice opened in 2023, providing age-appropriate care, specific to the needs of adolescents and young adults with life- limiting conditions requiring short-term supportive care, symptom management, or end-of-life care.

Hornsby Ku-ring-gai Hospital has been providing quality healthcare to the community since 1933. The campus incorporates six community health centres and continues to expand to meet increasing demand.

Ryde Hospital was established in 1934 after strong lobbying by the community. It features inpatient, outpatient and community services, as well as the specialised Graythwaite Rehabilitation Centre which was opened in 2013. The hospital is now under redevelopment.

Mona Vale Hospital provides high-level rehabilitation services as well as in-patient and community palliative care through its new 20 bed palliative care and geriatric evaluation and management unit.

The Kolling Institute is the oldest medical research institute in NSW. For more than 100 years, our clinicians and scientists have been changing the lives of patients by directly translating their research into medical practice.

2022 - 2023 in review The NORTH Foundation had continued growth in its supporter base and received generous contributions from the community throughout the year. Philanthropic income saw a substantial increase of $2.8 million compared to FY22. $11 million revenue received

funding 17 causes across the NSLHD as nominated by donors

from 1,900 donors

Total philanthropic income In FY2023, the NORTH Foundation gained an additional 604 donors compared to the previous financial year. Our 1,900 generous donors contributed to a 34% increase in revenue from FY2022, providing more opportunities for world-leading medical research and excellent patient care.

Bequest income Gifts in Wills, also known as bequests, are an investment in the future of healthcare and these acts of selfless generosity have enabled the NORTH Foundation to support, grow and improve health services and medical research across the district. In FY2023 over half of our revenue was from those who left a bequest to the NORTH Foundation. We received $6.4 million in bequest income and had more enquiries than ever from people interested in leaving a gift in their Will.

$6.4 million in bequest income

$4.6 million in non-bequest income

Transfers to the NSLHD As the official fundraising partner for the NSLHD, the funds we receive are transferred directly to our beneficiaries meaning that our hospital staff, clinicians and other healthcare staff are able to determine how best to use the funds to improve our patient services or expand our research programs. This financial year saw a 128% increase in funds transferred to the NSLHD. Increased distribution of funds in FY23 was mainly derived from bequest income received by the NORTH Foundation. $8,043,000 in contributions to hospitals, staff, projects and researchers

Total tied and untied funding ‘Untied funding’ is where a donation is made and the cause has not been specified. It includes funding where the hospital or research institute has been specified, but not the actual cause and as a result, these funds are often used for the beneficiaries’ highest priorities. ‘Tied or semi-tied funding’ is where the specific department, cause, clinician, researcher or project has been specified by the donor and therefore the funds can only be used for this purpose.

Top 10 tied funded causes *inclusive of bequest income

Cancer

$977,278

ICU

$588,993

Emergency

$10 million tied funds $1 million untied funds

$497,067

Renal

$442,317

Aged care

$339,165 Vector borne diseases $301,500

Investment in research In FY23, our generous donors chose to give $7.2 million to life-changing research projects. These gifts provided crucial funding for initiatives aimed at translating research into clinical practice, creating early detection mechanisms, discovering new treatment options and improving outcomes for patients.

Dermatology $187,854

Cardiology

$124,956

Hospice

$106,859

$7.2 million for research

Mental health $105,121

2022 - 2023 highlights With the help of our donor community and NSLHD staff, we had another successful year of activity across the NORTH Foundation. With more community fundraising efforts, we were able to reach more people across the district.

Health promotion activity As a health promotion charity our remit includes promoting and educating people on healthy habits in order to prevent and reduce illness in the community. Often when patients are open to sharing their stories with the community, we can use this as an opportunity to educate the community, through real life examples. This year, we continued to nationally recognise healthcare initiatives by posting stories and informative graphics across our digital platforms including our website and social media channels.

Opening of the Adolescent & Young Adult Hospice 2023 saw the opening of Australia’s first and only Adolescent and Young Adult Hospice (AYAH) in Manly, welcoming its first patients in February 2023. The AYAH is a purpose-built facility providing age- appropriate care, specific to the needs of young adults and adolescents with life-limiting conditions requiring short-term supportive care, symptom management or end-of-life care. The AYAH was initially launched through a philanthropic donation from generous community members and philanthropists Kay Van Norton Poche AO and Gregory Poche AO, facilitated by the NORTH Foundation.

Community fundraising

This year, our community fundraisers raised a combined total of $79,640 which demonstrated the dedication of our active community of fundraisers and fundraising groups across the NSLHD and beyond. • Mt Colah Preschool raised $18,000 for the paediatric ward at Hornsby Ku-ring-gai Hospital in their annual walkathon - an idea borne by the centre director to educate and encourage children to give back. • ‘The Speedy Spinals’ ran a half marathon and raised $5,000 for the Spinal Cord Injury Unit at Royal North Shore Hospital. • ‘The Knitters & Natters of Watermark’ raised over $8,000 for the Adolescent and Young Adult Hospice in Manly by creating knitted and crocheted goods to sell at various fundraisers. Their contributions have been invaluable over the years. These dedicated individuals consistently go the extra mile, and their fundraising efforts significantly contribute to our achievements.

“Its such a great feeling to have raised so much and we are already looking forward to our next fundraising adventure.”

Lisa Benad - Speedy Spinals

Hospital Helping Hands

Our regular givers are a dedicated group of passionate individuals who choose to support our hospitals or medical researchers on an ongoing basis. In their inaugural year, our Hospital Helping Hands provided the NORTH Foundation with reliable and sustainable funding and invested into areas like pancreatic cancer research and haematology. Consistent donations help the NORTH Foundation and the NSLHD effectively plan for the future. Their support provides our healthcare teams and researchers with confidence as they undertake their vital work and rely on scheduled funding.

2022 - 2023 highlights An important part of the NORTH Foundation strategy is to raise awareness within the community and within the NSLHD. Patients sharing stories and the growth in grant applications show that we are reaching the right people. Appeals success

This year we launched a new Christmas appeal theme, ‘All we want for Christmas’. Signed by healthcare staff from across the district, the appreciative signatories explained how patients often say thank you by sending thoughtful gifts such as chocolates and flowers. However, the staff highlighted that to help even more of their patients, what they really want is a donation to the NORTH Foundation. The appeal raised $208,000, a 49% increase on the previous Christmas appeal. The 2023 tax appeal raised $575,387 making it our most successful tax appeal yet - a 22% increase on the previous year. Our donors chose to support the ‘area of greatest need’ which means that the funds are directed to wherever they are needed the most. These donations also support our grants program which fund innovative projects lead by our healthcare staff.

Gifts of Gratitude Last year our grateful patient program called Gifts of Gratitude was launched across the NSLHD hospitals. The program aims to acknowledge and promote that our hospitals are there for the community throughout their whole lives, by telling the stories of patients who are thankful for the services they received whilst in their care. The program encourages grateful patients to make a gift of gratitude by making a donation to a nominated department, project or clinician they would like to support, and write a message of thanks to the team that supported them or their family. These messages are gathered by our team, and shared back with clinicians and other staff. We then contact these grateful patients to see if they are interested in sharing their story with our community to help raise further funding for the area they chose to support.

NSLHD & NORTH Foundation Grants program

This initiative allows NSLHD staff to access untied funding received by the NORTH Foundation. This financial year, $512,277 of funding was allocated to 17 innovative projects across three funding rounds. Round one ‘patient services’ focused on projects which contributed to the improvement, acquisition or testing of services and equipment that enhances a patient’s experience whilst under the care of the NSLHD. Round two ‘education, community wellbeing and outreach’ focused on projects which aim to improve wellbeing and health across the NSLHD through community-based education programs and improving access to resources for staff, patients and families. Round three ‘research’ aimed to assist the continuation and development of research that will result in improvements across the NSLHD. Projects usually include funding for clinical and laboratory needs, research enablers such as data and analysts, and early career researchers and fellowships. A focus for the NORTH Foundation team has been to raise awareness of the grants program to ensure a diverse range of applications are received. Throughout this process, the team focuses on establishing and developing positive relationships with staff from across the NSLHD. As the program continues to grow, we will be continuing to seek more innovative, collaborative projects which align with the NSLHD Strategic Plan.

$160k to patient services

$72k to education, community wellbeing and outreach

$270k to medical research

Impact of grant funding Ngalga Ngarra Aboriginal and Torres Strait Islander patients are being provided with enhanced cultural support, using iPad technology funded by the grants program.

The iPad program is entitled Ngalga Ngarra (pronounced Engalga Narra ) which in the Dharug Nation language translates in English to Sit, Look, Listen. Lillian Crombie is of the Pitjantjatjara/Yankunytjatjara people of central Australia and has been receiving dialysis for over four years due to chronic kidney disease. While she resides in Port Pirie, South Australia, Lillian regularly needs to return to Sydney for specialist appointments and dialysis. Six iPads funded through the grants program will enhance the services and support provided by the Aboriginal and Torres Strait Islander Liaison Officer within the NSLHD to Aboriginal and Torres Strait Islander patients who are experiencing feelings of isolation from family, friends and Country (the land of their mother/family).

The iPads will provide greater access to culturally appropriate resources, as well as more autonomy in how they choose to use each resource. Patients will be able to customise the support, so it correlates with their own spirituality, language, lore, kindship, sexuality or area of need. Lillian receives treatment three times a week with each session lasting up to four hours and enjoys using the iPad to have a yarn to family and friends over FaceTime. “I can show them where I am, the view and the trees around me,” said Lillian. Some of the culturally specific services and programs include NITV (National Indigenous Television) which incorporates Aboriginal and Torres Strait Islander news with mainstream national news; Koori Mail, an Australian newspaper owned and produced by Aboriginal and Torres Strait Islander people and Koori Radio, Sydney’s only Aboriginal and Torres Strait Islander radio station. In addition, there are Aboriginal and Torres Strait Islander produced and presented sports programs, documentaries and movies and 30 free health and education apps they can access. “The iPad technology will also support clinical staff in their professional development by providing cultural safe environments in hospital wards. As staff become familiar with the programming content on the iPads and engage in conversation with patients and visitors during routine tasks, it will increase cultural awareness for staff and address unconscious bias,” said Paul.

Aboriginal and Torres Strait Islander patients and their families, through intergenerational trauma, may be fearful of attending a hospital, especially if it’s away from Country.

Paul Weir, Deputy Director of the Aboriginal and Torres Strait Islander Health Service

The program aims to deliver the best in patient-centred care for Aboriginal and Torres Strait Islander patients with further cultural and kinship support, to de- escalate anxieties, feelings of isolation and the desire to discharge from hospital early,” said Paul Weir, Deputy Director of the Aboriginal and Torres Strait Islander Health Service.

Impact of grant funding

Easing pain for young patients

The purchase of virtual reality goggles was made possible by a grant from the NSLHD and NORTH Foundation grants program to the Hornsby Ku-ring-gai Hospital paediatric ward.

Nine-year-old patient Olivia uses virtual reality goggles during regular blood tests to help distract her from the procedures. The introduction of the virtual reality goggles is having a positive impact on Olivia and other young patients in the paediatric ward at Hornsby Ku-ring- gai Hospital. Used as a diversional therapy when undergoing painful procedures such as catheter insertion and removal, blood tests and injections, the goggles help to take children to another world.

The response from parents and patients has been extremely positive. Olivia’s mum Isobel said the goggles also worked well as a reward for Olivia for pushing herself outside of her comfort zone.

The goggles have been great at providing distraction during uncomfortable procedures and improves a child’s overall wellbeing whilst in hospital.

Emma Wooldridge, Paediatric clinical nurse educator

My favourites are the hammerhead shark and the lions. I just watched one on Ireland which was really cool, and I saw lots of animals, sheep and even a sheep dog!

“With Olivia being in hospital for extended periods, it’s good to have some fun things to pass the time as the days can be long,” said Isobel. “Having the diversion enables the procedures to be done quickly which further reduces their distress,” said Emma Wooldridge, Paediatric Clinical Nurse Educator at Hornsby Ku-ring-gai Hospital.

Olivia, Paediatric patient at Hornsby Ku-ring-gai hospital

Children can select from a series of short-form virtual reality adventures from colourful underwater scenes where you can follow giant whale sharks to world travel with gondola rides in Venice and African wildlife safaris with elephants and lions.

Impact of grant funding Keeping seniors moving

A recent grant from the NORTH Foundation provided funding for an Outdoor Seniors Gym, an innovative project that expands current rehabilitation programs and promotes community wellbeing at Mona Vale Hospital (MVH).

Older people are at a higher risk for hospitalised falls due to lower bone density, reduced muscle tone and conditions affecting balance and eyesight. These factors can also impact the ability to recover from a fall and quality of life after a fall. The Australian population is ageing rapidly, and more Australian’s are at risk of frailty which is associated with poor health outcomes, additional cost to the health service, and mortality. One way to prevent falls and reverse frailty is to stay physically active with a targeted exercise program which includes a progressive strengthening program, as well as challenging balance activities. The outdoor gym is used by inpatient rehabilitation and community patients under the supervision of physiotherapists and is a fresh air alternative to the existing rehabilitation gym within the hospital complex. The aim of the outdoor gym is to assist with improving mental alertness, strength, mobility, coordination and balance. Exercises as part of the Fresh Air Fitness Classes are designed to help with everyday activities such as walking on uneven surfaces, up and down stairs and getting up from a chair. The classes are a novel way to provide a fun but physically stimulating environment. Exercising outdoors has many positive effects on the life of the elderly both physically and mentally. Social interaction, fresh air and observing the change of the seasons helps relieve anxiety and brings a rhythm to the day. Lorna suffers from severe arthritis in her knee which would buckle randomly and collapse beneath her. Within the past year, 86-year-old Lorna has gradually lost her confidence after suffering a few falls and she was referred to Mona Vale Hospital Rehabilitation & Aged Care Service (RACS) to help improve her mobility and strength.

Physiotherapist Tina who works in the Rehabilitation and Aged Care unit at MVH says that Lorna has shown significant improvement in her balance outcomes. She has been doing exercises to improve the strength of her arthritic knee and she has not experienced any further buckling of the knee, thus reducing her falls risk. Since his stroke two years ago, 75-year-old Stan suffered from reduced balance and loss of confidence. While he was very active prior to his stroke, he has had a few falls and many near misses, so his GP referred him to the Falls Prevention Program at RACS.

The exercises are challenging. It offers a greater variety of exercises than those in the indoor gym. Stan, Outdoor Seniors Gym Participant

Stan is gaining the knowledge and confidence to continue exercising at home every day for an hour. He is seeing improvements in getting in and out of a chair with ease, in addition to confidence with his walking and balance when he is out and about within his community. The staff at RACS enjoy seeing the benefits the Outdoor Seniors Gym continues to bring to patients by helping to improve their balance and in turn, their quality of life.

Niki & Ange’s story The Adolescent and Young Adult Hospice (AYAH) provides welcome respite for Niki and her daughter, Ange.

F ive years ago, Niki’s daughter Angelina (Ange) was a healthy, social, independent 14-year-old who dreamed of becoming a make-up artist, singer or actress. “Ange loved performing arts and would often stay back at school for dance or singing rehearsals and help with the latest musical production,” said Niki. While on a year nine school camp, Niki was told that Ange had fainted, but it wasn’t witnessed. Niki then started to notice a few subtle changes in Ange’s behaviour that Niki recalls, “didn’t seem right”. “Ange was helping me set the table for dinner and dropped a glass of water and my stepdaughter said that Ange was falling over a lot while they were out walking the family dog,” said Niki, “so I took her to our doctor who gave us a referral to see a neurologist.” Before the appointment, Ange recalled the moment her life changed forever. “Ange asked me to colour her hair and I said of course but when she came to hug me, she had a seizure,” said Niki. “I’d never seen anyone experience a seizure before, but it was so traumatic I couldn’t stop screaming.” It was the start of endless hospital admissions and appointments with doctors, paediatricians and neurologists to find the cause of the seizures. Ange was initially misdiagnosed with juvenile myoclonic epilepsy (JME) which often begins in the teenage years. With medication, she was still able to go to school, but her seizures continued.

Niki couldn’t imagine Ange’s condition could be something worse than epilepsy; however, despite Ange being on numerous medications to control her condition, within a few months her seizures were occurring more frequently to once or twice a week. These ranged from absent seizures where she would stare into space and be very still, to tonic-clonic seizures with violent muscle contractions and loss of consciousness. During a lengthy hospitalisation for further tests and trialling different medications, a genetic test discovered Ange has a rare autosomal recessive genetic disorder called Lafora Disease, a form of childhood dementia. Doctors informed the family that Ange had a life expectancy of five to ten years which was heartbreaking news. Ange was only 15 years old. “It’s an extremely rare neurological degenerative disease and Ange is the only person in Australia that we know to have it,” Niki explained. “It’s just devastating and it’s completely changed our whole lives,” said Niki who resigned from a corporate marketing role to become Ange’s full-time carer. As Ange’s seizures could be fatal, Niki relies on support from carers and nurses during the day to provide the constant care Ange needs. At night, Niki sleeps next to Ange to stop her from moving around the house and potentially hurting herself. Hospital visits are frequent with Ange often admitted for two to three days at a time.

We usually stay in a ward with much older dementia patients which is not a place for a young girl.

Niki, mother of AYAH patient

When Ange discovered the AYAH in Manly, it was a relief. Before then, there were no respite services available for adolescents with complex issues. “Until the AYAH, there was nowhere that offered the one-on-one care that Ange needs so as soon as it opened, I booked in for a week’s respite with Ange.” “The staff are truly amazing,” said Niki. “Having qualified nurses and a doctor on duty also gives me so much comfort.” Niki also appreciates all the additional services that are available at the AYAH, such as the occupational therapists, psychiatrists and dieticians. With its “calm atmosphere”, Niki feels that the staff understand Ange and her daily routine and they have everything she needs so her family can avoid hospital visits should she have a major seizure. “The first night we came to the AYAH, they had a twilight session on the balcony and a musician came to sing.” “Ange can’t go out and listen to live music like her friends do, but she got to experience what it would be like and she really enjoyed moving her arms to the music and singing a little.” While at the AYAH, Niki stays in a two-bedroom apartment and can get the respite she needs. “It gives me the opportunity to recharge and a bonus is that I sleep in my own bed.” Niki loves that her family can stay and all have a meal together. She can take the time she needs to go for a walk while the staff watch and care for Ange. Niki trusts that if there are any issues, they will get her straight away. “When she’s scared and I’m not there, they comfort her which is priceless,” said Niki. “Ange hasn’t eaten solids for two years, but the chef at the AYAH took the time to make her a special meal and she loved it.” No matter how complex or severe Ange’s condition gets, Niki is confident that the staff will treat her well. Niki believes that the AYAH has an amazing healthcare team that “feel like family”. Niki said, “the staff even organised a visit from James Tedesco who is the captain of the Sydney Roosters.”

“He gave Ange a signed jersey and she winked at him which made him blush!”

Manly AYAH is a vital service for us and we are so appreciative of the care, compassion and kindness shown by all the staff there.

Niki, mother of AYAH patient

Ange is now 19 years old and progressing towards her life expectancy. She recently had 98 tonic-clonic seizures within two weeks with many lasting up to 15 minutes. “I called everyone in the family because I thought, ‘this is it’,” Niki said. The family has not given up on finding a cure for Ange but in the meantime, Niki and Ange have scheduled more respite visits to the AYAH.

Researcher spotlight

Professor Sarah Hilmer and her research team at the Kolling Institute are dedicated to improving life for older Australians. N orthern Sydney has one of the oldest populations in the country, making Professor Sarah Hilmer’s research pertinent as its positive impact can be felt right here in our community. Professor Hilmer’s ageing and pharmacology research group, based at the Kolling Institute, aims to improve healthy ageing in older people. A significant part of this focus is to ensure that medications are not adding to a person’s frailty, but instead, enhancing quality of life. “There is a great deal of complexity in understanding how to prescribe medication. We need to gain better predictions for how a drug will interact with everything about the patient: other medications and health conditions, diet, exercise, ethnicity, sex, age and frailty too.”

The challenge this provides is that it makes it very difficult to know the therapeutic effects and side effects of medications for each person, as these are so dependent on individual patient factors. Some of the side effects can be significant and end up making an ageing person look a lot older than they really are. In practice, it can be hard to distinguish these side effects from age itself or from the medical conditions that the medications were prescribed for. Professor Hilmer set out to identify whether different regimens of polypharmacy caused frailty and whether de-prescribing medication would reverse the negative effects of polypharmacy. In pre-clinical models, she and Dr John Mach, a basic science research fellow supported by the Penney Ageing Research Unit, were able to prove that some polypharmacy combinations impaired ageing. However, when the drugs were gradually ceased, the negative side effects disappeared too. This was a significant step in Professor Hilmer’s research and allowed her to move on to investigate a mechanism to understand how polypharmacy and the de-prescription of medications affected the body. Professor Hilmer developed the Drug Burden Index (DBI) as a solution to aid in accurately measuring the ways drugs could be slowing older people down both physically and mentally. This tool was developed to help clinicians understand the effects of the combination of medications better than just counting the number of medications, by also considering the type and dose of medications. The higher the DBI score, the higher the risk of medication-related impairment of cognitive and physical function.

It became clear early in my career that there was a big research gap when it came to understanding the ageing population. Professor Sarah Hilmer, Kolling Institute

One area that stood out to Professor Hilmer was the lack of knowledge of the effects of medicines in older people who have a lot of concurrent health conditions and take a lot of medications. Most medication is tested on people classified as middle aged and is not tested in combination with many other drugs. Polypharmacy is where five or more medications are taken by a single person. 43% of Australians over the age of 50 years old are taking five or more medications. This number increases to being two-thirds of Australians over 75. Combinations of drugs vary significantly between individuals, and it is simply not possible to test every combination of prescribed medications, with every combination of medical conditions and other patient factors.

With the help of pharmacist Dr Lisa Kouladjian O’Donnell, first as a National Health and Medical

Our focus is on achieving optimal ageing: minimising the impact of disease, while maximising physical and cognitive function and social engagment.

Research Council (NHMRC) funded PhD student and later as a post-doctoral researcher supported by philanthropy, Hilmer’s team in the Kolling developed software to calculate and report on the DBI to clinicians. This software took over five years to develop into a user- friendly and comprehensive system. “The hard work has been worth it. To now see the program in use in the community and in nursing homes around Australia and to know that it is helping hundreds of older Australians ever year is why we do this.” After the DBI software’s success in primary care, they worked on integrating the index into hospital care. The local hospitals now use an electronic prescribing system that integrates the DBI as clinical decision support. The software now calculates DBI for every older patient when a change is made to their medication list, and instantly reports back to the clinicians. The DBI report helps clinicians recognise medications that impair function in older patients, so they can weigh this risk of harm against the current benefits for the individual. It is now being rolled out in usual care across other health districts. This research was funded by NSW Health, the NHMRC and philanthropy from the Rothwell Fellowship. “It is often said that once you are on five or more drugs, you are in trouble” says Professor Hilmer. Clinicians have been deprescribing for a long time, often with a “let’s just see if you feel better” mentality, as they do what they can to help their patients. Professor Hilmer’s research has now backed this practice with science - providing evidence and reassurance when prescribing for older patients, to ensure that the patient gets net benefit from their medications. This software will help doctors, pharmacists, and nurses by recognising the effects of drugs on an individual’s cognitive and physical function, allowing a clearer assessment of how to proceed. Professor Hilmer’s research is ongoing, and whilst the outcomes to date

have been positive, it must continue to reach the people who need it most. Whilst grants have been able to make an impact, they are usually not enough to fully fund the research, and have significant exclusions, which means they need additional funding. Professor Hilmer is grateful for the funding she has received through philanthropy and says that without this support, her team wouldn’t have seen the positive impacts they have seen so far.

Healthy ageing is a bit of a dream - people do get sick. It’s how we help people live as well as they can that is important. Professor Sarah Hilmer, Kolling Institute

Supporting multidisciplinary early career researchers with post-doctoral fellowships in the stimulating environment of the translational, collaborative Kolling Ageing and Pharmacology Laboratory, builds capacity in the next generation of researchers in this new field. Facilitating her staff to travel to other labs and learn new techniques, attend conferences, and present around the world to develop their knowledge and networks, allows for increased funding capabilities for Professor Hilmer’s team. The funding for these positions and activities is very limited especially for early researchers. This is where Professor Hilmer needs the continued support of the philanthropic community, to ensure that geriatric research continues so that her team can continue to have a positive impact on the ageing population in Northern Sydney and beyond.

Thank you The NORTH Foundation expresses gratitude to the generous individuals, trusts, foundations, and organisations who have supported us this year. Collectively, we strive for a healthcare system that delivers exceptional patient care and addresses real-world health challenges. We also recognise and respect those who have chosen not to have their names published.

The Luan & Yoong Foundation Lucille J Lees

The Adolph Basser Trust Collendina 5 Foundation Ana Bordeianu Andrew Potter Angela (Suet) Pong Billie Parker Dyer Carol Blair Catherine Anne Penney Gonski Foundation Emorgo Foundation Lowenden Foundation Eleanor Dunn Girgensohn Foundation Gordon Howlett Graeme Lane

M.A.S.T. Foundation McNally Foundation Michael Ellies Parmedman Family Trust Patricia Penn Paul Orban Pratten Foundation

Raymond Raper Rosemary Rajola Skipper-Jack Jacobs Charitable Trust Susan and Garry Rothwell Terrence Turk

The Northcare Foundation Fussell Family Foundation Warren and Marianne Lesnie

Graham Norman Nock AM OBE Greg and Beverley Alt Foundation Heart Research Australia

Ingrid Kaiser Ipsen Pty Ltd Irene Penney Franco Janet Knight Joanne L Parkes John Eager Joseph Vucetic Jun Hu The Lin Huddleston Charitable Foundation

Estate of the late Anita Stafford McKenzie Estate of the late Ann Gray Estate of the late Ann Kompus Estate of the late Anne Margaret Murray Estate of the late Arpad Pocza Estate of the late Barbara Joan Bush Estate of the late Barbara Juliette Roper Estate of the late Barry Joseph Robert Estate of the late Beryl McAlpine Estate of the late Christopher Donald Micallef Estate of the late Claire Judith Clark Estate of the late Frances Chen Estate of the late Gregory Lloyd Hoare Estate of the late John and Laurine Proud Estate of the late John Charles Battin Estate of the late John William Salmon Estate of the late Majorie Ogilvie Cable Rorke Estate of the late Margaret Mary Williams Estate of the late Mary Veronica Hopkins Estate of the late Pamela Margaret Andrew Estate of the late Roslyn Grace Watt Estate of the late Wendy Noela McCormick

Senior leadership team The NORTH Foundation has a committed and seasoned senior leadership team, dedicated to cultivating relationships with healthcare personnel and donors. Their efforts are centered around community engagement and raising awareness for the NORTH Foundation, ultimately contributing to fundraising initiatives for our beneficiaries.

Gilbert Lorquet Chief Executive Officer

Amelia Seeto Director of Marketing and Communications

Gilbert leads the team and activities of the NORTH Foundation and is dedicated to significantly growing the organisation so it can support more world-class medical research and patient care services. Gilbert’s role is to provide a clear sense of direction, with overall executive responsibility for fundraising and day-to-day operations. He has a background in philanthropy and brings a wealth of experience to lead the NORTH Foundation team. Outside work, Gilbert is the Chair of Football NSW and is passionate about football.

Amelia has committed her career to the third sector and has worked for disability and human rights charities, social enterprises, impact investors and political campaigning organisations in the UK, Spain and Australia. As an experienced communications director for purpose-driven organisations, she brings extensive knowledge to the team and hopes to raise the profile of the NORTH Foundation. Outside work, Amelia is a board director of a few charities that focus on youth mental health and women’s rights.

Patrick Foong Finance Manager

Patrick joined the NORTH Foundation in June 2022 as our Finance Manager. He previously worked with several charities in the healthcare and research sector for more than ten years. Patrick brings extensive finance and corporate governance experience to the organisation and he is passionate about giving back to the community. Patrick and his team are accountable for funds received by the NORTH Foundation and gifts received by the NSLHD. His team is also responsible for the business services function of the organisation including database maintenance and financial reporting.

Board of Directors The Board of Directors, with diverse professional expertise, assumes responsibility for strategic oversight, financial management, performance review, and ensuring our adherence to appropriate policies and procedures.

Michael Ellies Director Chair

Penny Williams Director Secretary

Merren Armour Director Resigned April 2023

Tanya Bowes Director

Jonathan Morris Director

Lee Gregory Director

Tim Parker Director

David Singer Director

Michelle Tea Director

Deb Willcox Director Resigned Sept 2022

Development Committee The Development Committee brings a broad skillset and wide variety of experience from across the philanthropic sector. This committee provides support for the organisation’s initiatives and activities and its members are all driven to help us achieve our goals.

Nina Mapson Bone Chair

Meredith Cummins

Nick Jaffer

Christie Newbon

Elle McGlynn

David Orr Resigned Dec 2022

Jakki Travers Resigned Dec 2022

Jason Tunbridge

Julie Shaw

How you can support us We rely on the generous support of our community to help us bridge the gap between what is currently needed today and what is possible in the future for our healthcare services and medical research. There are a number of ways you can get involved to help improve our patient services and grow our medical research across the NSLHD.

Join our donor community All donations make a positive difference to our beneficiaries and ultimately to patients. You can easily donate online, by mail or by phone.

Join our Hospital Helping Hands Regular donations from this group allow us to strategically plan and provide ongoing funding to our healthcare services and medical research.

Participate in a community fundraising initiative Participate in Conquer Kokoda or Costumes for Cancer and help us grow our network of community fundraisers while supporting important causes.

Leave a gift in your Will Consider becoming a Northern Star by including a gift in your Will to help support one of our NSLHD hospital services or medical research initiatives.

Share your story If you or a loved one have had a good experience with one of our healthcare services, we would love to hear from you! We are always looking for grateful patient stories to help us promote NSLHD services.

Provide probono support or gifts-in-kind As a small charity we are always grateful for any pro bono support or gifts-in-kind. If you are a business that could offer support, we would love to get to know you and form a partnership with you.

Fundraise for us Fundraising can be a fun and rewarding team-building exercise for a family, school or business. There is no one way to fundraise and engage people in a cause so however you choose to fundraise just don’t forget to involve your network and have fun!

Support one of our fundraising priorities Each year, we ascertain major fundraising priorities which align with the district’s strategy. We are always looking for individuals who are happy to be ambassadors for these projects and connect us to potential donors who may share these interests.

I give monthly because I am grateful for the care I received from the neurosurgical team. The doctors, nurses and other professionals put their heart into helping me, so I am contributing in appreciation of those wonderful and caring healthcare staff. Tianrui, grateful patient

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