Vale Vicki Modell

Dear Vicki, you will be missed. The JMF Centre Melbourne would like to acknowledge and pay our respects to Vicki Modell, co-founder of the Jeffrey Modell Foundation (JMF). Alongside, her husband Fred, Vicki co-founded JMF in the memory of their late son Jeffrey who pled with his parents ‘to do something’ about primary immunodeficiencies.

Vicki was a staunch advocate for patients with primary immunodeficiency and their carers globally. By sharing their story, the Modell’s channelled their grief into building JMF, raising millions and constructing the global JMF centres network to support the community of patients who live with primary immunodeficiency.

Vicki would often be seen at international meetings including the biennial ESID conference, and provided personal touches to the JMF’s operations, including personal emails to their centres acknowledging their contribution to improving the lives of primary immunodeficient patients. The JMF centre Melbourne was humbled to have received one of these letters earlier this year.

We at JMF Melbourne feel privileged to be part of this global network and will strive to continue the unparalleled work that Vicki and Fred started, and send our condolences to Vicki’s family, friends and the whole JMF family who are mourning her loss at this time.

Dr Emily Edwards wins Grifols ASPIRE Award 2022

The JMF Centre for Primary Immunodeficiencies Melbourne Dr Emily Edwards was a recent recipient of the Grifols ASPIRE Award (Award for Scientific Progress in Immunodeficiency Research). Her research will develop and standardise functional tests to prove whether genetic variants identified in primary immunodeficiency patients are causing their disease. The project is a collaboration between Monash University The Alfred Monash Health Eastern Health
The award was presented at the recent European Society for Immunodeficiencies - ESID biannual meeting in Gothenburg, Sweden by panel member Prof Charlotte Cunningham-Rundles.
To read more about Emily's work click here.

Prof Charlotte Cunningham-Rundles from the ASPIRE Award Jury presents Dr Emily Edwards, with the Grifols ASPIRE Award at the 2022 European Society for Immunodeficiencies (ESID) meeting in Gothenburg, Sweden in October 2022.

Awardee Dr Emily Edwards and mentor Professor Menno van Zelm (Monash University and Alfred Health) with their ASPIRE Award.

$6.3 million MRFF grant awarded to profile COVID-19 vaccine responses in vulnerable populations

The consortium entitled PROPHECY: Profiling immune RespOnse in Paediatric and High-risk populations to SARS-CoV-2 is led by a diverse executive team of both scientist and clinician researchers, Prof Menno van Zelm (JMF Melbourne Director and Immunology & Pathology, CCS), Dr Gabriela Khoury (Monash Biomedicine Discovery Institute), Prof Heidi Drummer (Burnet Institute), A/Prof James McMahon (Infectious Diseases and Alfred Health) and A/Prof Benjamin Rogers (School of Clinical Sciences and Monash Health).

The MRFF-funded project will examine immune response to vaccination and infection across humoral immunity (antibodies, B cells) and cellular immunity (T cells) in children and adults with underlying health conditions including chronic kidney disease, lung disease, immune deficiencies, immunosuppressive treatments, and stem and solid organ transplant recipients.

The Executive team is delighted to be working alongside important consumer patient organisations and Victorian Government’s, Safer Care Victoria, Spleen Australia, AusPIPS, the National Association of people with HIV Australia (NAPWHA), Musculoskeletal (MSK) Australia and Crohn’s and Colitis Australia. These organisations will ensure the patient voice is incorporated throughout the study and will towards translating important findings into clinical practise.

For more information read the full media release here

AusPIPS releases About Immunoglobulin (Ig) patient brochure

JMF Melbourne works closely with patient organisations to support and advocate for patients.

AusPIPS (Australian primary immunodeficiency patient support), in collaboration with IDFA, IDFNZ, Myasthenia Alliance Australia and Myeloma Australia has developed a patient-centred brochure explaining the uses of immunoglobulin replacement therapy and tips for new and existing patients receiving this important treatment.

All organisations involved support and advocate for immunodeficient patients receiving this important therapy. Supported by an unrestricted educational grant from CSL Behring (Australia) Pty Ltd.

The brochure can be accessed here.

Currently available in English. Auslan, Chinese*, Greek*, Hindi*, Italian*, Samoan* and Vietnamese*

*NAATI accredited translations

Updated COVID-19 vaccination FAQs released by ASCIA

The Australasian Society of Clinical Immunology and Allergy (ASCIA) recently released their frequently answered questions document. These questions are relevant to those individuals with allergy, immunodeficiency and autoimmunity. Click here to view

JMF Melbourne involvement in AusPIPS 2021 Forum

On the 18th September 2021, JMF Melbourne’s Director Menno van Zelm presented on the genetics of Primary Immunodeficiency as part of patient organisation AusPIPS annual forum: PIDs: More Than A Single Disease.

JMF Melbourne’s Samar Ojaimi, an infectious diseases and immunology consultant at Monash Health also presented on infectious diseases and Emily Edwards from Monash University chaired the forum.

JMF Melbourne has close links with patient organisations in order to encourage increased public awareness of Primary Immunodeficiencies and to collaborate on project’s that directly impact patient quality of life and treatment options.

As part of this Menno is a current member of AusPIPS Medical and Scientific Advisory Panel.

The importance of community SARS-COV-2 vaccination to protect PID patients

Mother and daughter CVID patients talk with Dr Shane Einstein A Go Go about the importance of vaccination of community vaccination, as some patients are unable to receive vaccinations and some including children cannot be vaccinated at the moment. Listen to how this affects them: Click here

Dr Shane host of 3RR’s Einstein a go go

Day of Immunology 2021 Virtual Public Lecture - COVID-19 Vaccines

The science behind vaccination

Join The Australian and New Zealand Society of Immunology (ASI) in celebrating international Day of Immunology 2021.

In Australia and New Zealand COVID-19 vaccines are being rolled out across both countries. Have you received your first dose or are you still deciding on whether to get vaccinated? Are you wondering how vaccines work? and How are they developed?

This event is a great opportunity to answer your questions and access accurate scientific information on COVID-19 vaccines and how vaccines work in general.

This event will cover the basics behind how vaccines work, which COVID-19 vaccines are available in Australia and New Zealand and how vaccines are developed. Importantly, experts will promote understanding of informed choices when deciding to get vaccinated.

We have a fantastic line up of talented immunologists and public health researchers who are vaccine experts.

● Dr Andreas Kupz, James Cook University, Australia.

● Dr Kylie Quinn, RMIT University, Australia.

● Prof. Graham Le Gros, The Malaghan Institute of Medical Research, New Zealand.

● A/Prof Holly Seale, University of NSW, Australia.

The evening will be chaired by Dr Shane Huntington OAM, exceptional science communicator and host of RRR Einstein a Go-Go radio show, and will be followed by a Q&A session.

Register now

Recent Scientific Reports

Members of the JMF Centre Melbourne frequently collaborate to publish new case studies and scientific research relating to Primary Immunodeficiency. An up to date list of scientific reports published by the consortium can be found below:

Combined immunodeficiency in patient with LCP2 variants

JMF Melbourne team collaboration between Monash Health and Monash University uncover a novel genetic error driving combined immunodeficiency and autoimmunity. This study shows that a variant in the LCP2 gene encoding the adaptor protein SLP76, known to be important for T-cell signalling and function. This variant reduces the proteins expression levels causes reduced signalling upon engagement of antigen-receptors important for sensing foreign agents on both B and T cells. This limits the ability of B and T cells to respond to these agents, so that the immune response cannot combat these pathogens or respond to the same degree as healthy individuals to vaccines. The identification of these genetic causes of disease are important for understanding what drives disease in each patient, and can provide different avenues for treatment. Read more here.

Stability of SARS-CoV-2 memory B cells

World-first research from the laboratory of JMF Centre Melbourne’s Director A/Prof Menno van Zelm sheds light on maintenance of the memory B cell response to SARS-CoV-2. This study shows that although antibody levels decline, the number of memory B cells capable of remembering the virus are maintained at stable levels for up to 8 months. These cells are responsible for production of protective antibodies upon viral re-exposure. These insights provide hope for long term protection to SARS-CoV-2 and hope for protective long-lasting immunity to vaccine. Read more here.

Genetics of Predominantly Antibody Deficiency

Comprehensive review of the genetic defects driving predominantly antibody deficiency (PAD) the most common form of primary immunodeficiency. This article highlights the impact of these genes on B cell biology, and how this impacts antibody production, as well as the challenges impeding a higher genetic diagnosis rate for PAD patients. Furthermore, authors address these challenges can be overcome and the importance of increasing the genetic diagnosis rate to improve patient access to personalised medicine. Read more here.

Timeline detailing single gene variants identified in PAD patients. To read the full text click here.

Primary Immunodeficiencies Worldwide

A recent editorial highlighting the scope of articles incorporated in the “Primary Immunodeficiencies Worldwde” topic. This topic brings together twenty-two original clinical and basic research articles from various geographical areas to highlight challenges and developments in epidemiology, diagnosis and treatment of Primary Immunodeficiencies Worldwide.

Click here to read this research topic

Identification of immunological differences in patients with non-infectious complications

A study of the clinical and immunological features of adults with predominantly
antibody deficiency (PAD). This paper identified key differences in the numbers
of different of immune cell subsets in PAD patients with and without
non-infectious complications including autoimmunity and auto-inflammation, which
may represent immune cell biomarkers of disease development.

Click here to read paper in full

Quantification of T cell and B cell Replication History to Screen PIDs

A new molecular technique for the quantification of T cell and B cell replication from dried blood spots and how it might form the basis of a second-tier test in neonatal screening in PIDs.

click her to read in full

Stem cell transplantation to treat XLA

Patients with X-linked agammaglobulinemia (XLA) lack B cells and as such don’t produce protective antibodies. This paper is a case study following an XLA patient with B-ALL pre and post stem cell transplantation, and provides evidence for successful restoration of an antibody response.

click here to read in full

Antibody deficiency in STAT1 gof

A case study outlining the clinical and immunological presentation of a patient with STAT1 gof. This paper investigates the mechanisms underlying antibody deficiency in this patient.

click here to read in full

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Delayed diagnosis and complications in adult PAD patients

A retrospective study of the clinical and immunological features of Australian adults with predominantly antibody deficiency (PAD).

click her to read in full

JMF Centre members contribute to understanding of COVID-19

Sustained COVID-19 immunity post infection

A world-first research study led by JMF Centre Melbourne’s Director A/Prof Menno van Zelm have demonstrated long lived immunity to SARS-CoV-2. The study shows that although antibody levels decline, memory B cells the cells that remember the virus and generate protective antibodies upon re-exposure are maintained up to 8 months after infection. These insights provide hope for long term protection against the virus and hope for lasting immunity by vaccines. Watch Menno describe the importance of this research click here.

JMF Centre Melbourne's Director A/Prof Menno van Zelm.

JMF Centre members contribute to clinical understanding of COVID-19

JMF Centre Melbourne Members A/Prof Menno van Zelm and Prof Robyn O’Hehir have recently contributed to a new compendium answering important questions about COVID-19 and SARS-CoV-2.

The compendium of 150 questions formulated by young clinicians and scientists was recently published in Allergy. This comprehensive and practical overview focuses on: virology, immunology, diagnosis, patient management, treatment, clinical trials,drug discovery, vaccine development and epidemiology.

Click here to view

Online public forum supports Primary Immunodeficiency patients during the COVID-19 pandemic

The COVID-19 pandemic has brought unprecedented hurdles for everyone worldwide especially patients with immunodeficiencies. Many have found themselves isolated to minimise the risk of COVID-19 infection which in their case could be severe due to the reduced functionality of their immune system.

The JMF Centre Melbourne has contributed to forums supporting Primary Immunodeficiency patients through these challenging times.

Australian patient support and advocacy charity AusPIPS Inc. will be holding their second online forum entitled COVID-19 and Primary Immunodeficiency on 26th November 2020. To register click the button below:

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Australian patient support and advocacy charity AusPIPS Inc. held its first online forum entitled COVID-19 and Primary Immunodeficiency in May 2020. The event gave an overview of the current status of the COVID-19 pandemic, how antibodies are generated and their importance in controlling infection, and physiotherapy and mental health strategies to support patients. As part of the program JMF Melbourne director Associate Professor Menno van Zelm, who is also part of the AusPIPS Medical Advisory board presented to patients on how our immune system generates antibodies, how antibodies fight viruses and how immunoglobulin replacement therapy works.

Raising awareness of Primary Immunodeficiencies

JMF Melbourne Dr Emily Edwards joined Dr Shane on 3RRR’s einstein a-go-go on Sunday 5th July. For the duration of the show Dr Shane interviewed 20 postdocs in 20 minutes. The show provided a platform for early career researchers to describe their research. For this, Emily described what primary immunodeficiencies are and how she investigates the genetics and immunology driving these diseases.

To hear her interview and to learn more about primary immunodeficiencies click here.

Or listen to more about her research below:

On Sunday 26th April, the JMF Centre Melbourne’s Director Associate Professor Menno van Zelm joined Dr Shane on triple R’s Einstein-a-go-go. Menno talked about primary immunodeficiency and treatment. He was also joined by patients describing what primary immunodeficiency means to them. Click here to hear the interview.

IUIS Webinar: COVID-19 in immunodeficient patients

Want to learn more about how COVID-19 affects immunodeficient patients? Join this live webinar with Dr Kathleen Sullivan.

Click here for more information.

Call to action from the American Association of Immunologists

“Scientific and public health experts, including the trusted Dr. Anthony Fauci, are vital to combating COVID-19 and safely reopening the US. It’s important for all Americans to stand strongly behind them and take their advice. #FollowTheScience #IStandWithFauci”

Australian scientists develop rapid COVID-19 immunity test

JMF Centre director A/Prof Menno van Zelm and his team develop a rapid test to determine a person’s immunity to COVID-19.

1. Test will determine who remains infectious and the severity of COVID-19 infection

2. Test will assess differences in the blood of patients with mild disease compared to those with sever infection, to find biomarkers to predict who needs early medical treatment.

View the full story here

For media enquiries please email: jmf-melbourne@monash.edu

COVID-19: Update

For up to date information regarding COVID-19 please see the following resources:

*Please note that as we all continue to learn more about the global spread of Coronavirus, the number of cases reported and additional information might change on a very frequent basis

1. Video update from Kathleen Sullivan, MD, PhD and Chief of Allergy and Immunology at the Children’s Hospital of Philidelphia.

2. Joint statement from international immunology societies on the current epidemics of the new coronavirus

https://ipopi.org/wp-content/uploads/2020/03/COVID19_Joint_IPOPI_ESID_INGID_APSID_LASID_ASID_CIS_ARAPID_SEAPID_Statement%E2%80%94Update1_v2.0_20200311_1300CET-FINAL.pdf

3. Your countries governmental updates for information specific to your region.

2nd Annual Symposium - " Bridging Research and Care for Patients"

The JMF Centre for Primary Immunodeficiencies Melbourne will hold its 2nd annual symposium on Friday 11th October 2019. The symposium will feature a keynote from A/Prof Mirjam van der Burg (LUMC, Leiden, The Netherlands) alongside short talks from local immunology registrars and junior researchers.

Local Speakers:

Josh Chatelier - Alfred Health

Emily Edwards - Monash University

Laine Hosking - The Royal Children’s Hospital

Fiona Moghaddas - The Royal Melbourne Hospital

For any queries or to register your interest to present email: jmf-melbourne@monash.edu

The centre would like to acknowledge the support of the Australasian and New Zealand Society for Immunology (ASI) Visiting Speakers Program for their support of Mirjam’s visit to Australia.

Scientists share their research with PID patients

Dr’s Vanessa Bryant (WEHI) and Emily Edwards (Monash University) were both invited by the Immune Deficiency Foundation of Australia (IDFA) to present at their annual conference in Brisbane in April this year.

The event saw clinicians and researchers in the field of Primary Immunodeficiency present on diagnosis, treatment and research to patients with Primary and Secondary Immunodeficiencies and their families. Emily presented on “Immunotherapies for PIDs” demonstrating the range of therapies available and highlighting efforts being made in the research setting to improve therapeutic options for patients. Vanessa's presentation entitled, “CVID genotypes and phenotypes: refining biology in the age of precision medicine” discussed the diversity of clinical presentations of Combined Variable Immunodeficiency (CVID) and treatment options available for patients with defined genetic defects.

This was an invaluable opportunity to meet patients and their carers, to understand the diseases we research and the hurdles patients face on a daily basis.

Do Something: The Jeffrey Modell Story

Over 30 years ago, the Modell’s lost their son Jeffrey to Primary Immunodeficiency. The couple’s enduring love for each other gives them the strength to fulfill their promise to him and ‘do something’ by seeking answers to what took his life. Now Jeffrey’s life & legacy live on in “Do Something: The Jeffrey Modell Story.”

We are proud to be sponsored by the Jeffrey Modell Foundation and encourage you to follow @dosomethingdoc on Facebook to get the latest updates on the release of what will be an inspirational film. The film will be released on all digital and VOD platforms worldwide on June 11th.

National Immunodeficiency Strategy

On 8th March 2019 ASCIA (Australasian Society of Clinical Immunology and Allergy) hosted a meeting in Melbourne to develop a National Immunodeficiency Strategy. The mission is to improve the health and wellbeing of people with primary immunodeficiencies (PIDs) and minimise the impact on individuals, carers, health services and the community.

Delegates from across Australia and New Zealand included clinical immunology specialists, nurses and dietitians (ASCIA members), patient organisations (AusPIPS, IDFA, IDFNZ, HAE Australasia), major research centres (JMF Melbourne, ANU, WEHI, Garvan), funding bodies (National Blood Authority and Jurisdictional Blood Committee), supply channels (Australian Red Cross Blood Service) and other potential collaborators such as NBS MedicineWise. The meeting was supported by unrestricted educational grants from CSL Behring and Grifols. The program and outcomes are not influenced by this support.