TAMS was established in 2012 due to the overwhelming need for sufferers and their supporters to find a local voice and active support network.
TAMS’ three founding members are David Mayne, Claire Ellis and Kristin Sinclair, who in 2011-12 acted upon their desire for support, education, research and advocacy within Australasia for mastocytosis (and later mast cell activation disorder) patients, and established TAMS.
TAMS is an independent ‘not for profit’ incorporated organisation with a committed and functional volunteer committee of individuals – all of whom are sufferers or carers – ensuring your needs will be met.
Browse our achievements and activities since our establishment in 2012 below:
- Hosted bi-monthly online support groups in January, March, May, July and still to come in November
- Hosted bi-monthly online patient education webinars, all available on demand for TAMS members (by request), on the following topics:
- Emerging treatments targeting mast cells and mediators with Dr Jeremy McComish
- I think I have MCAS. What do I do? with Professor Pete Smith
- Managing surgical procedures and anaesthesia with Professor Connie Katelaris MBBS PhD FRACP
- COVID-19 and Mast Cell Diseases: A patient’s perspective with David Mayne, TAMS Chair
- Launched the mast cell diseases medical professionals database for patients survey to help increase its database of specialists in Australia who treat patients with mast cell diseases.
- Produced a video filled with some great advice from patients on living with your mast cell disease. These great tips were gathered during our January online support group for TAMS Members.
- In May 2022, we held a double your donation campaign. Every dollar donated to The Australasian Mastocytosis Society (TAMS) in May was matched by Mishele and Casey Cunningham, up to $2,000 in total. We raised over $4,000. These donations will help support the work of TAMS, including research, education and advocacy programs that help improve the lives of people with mastocytosis, MCAS and HaT.
- TAMS proudly contributed to a poster on the top ten needs of the mast cell disease community, presented by The Mast Cell Disease Society’s Research Co-Chair, Susan Jennings, PhD and Valerie Slee, RN, BSN Board Chair and Research Committee member at the American Initiative in Mast Cell Diseases (AIM) annual conference in Salt Lake City in May.
- TAMS contributed to the peer-reviewed article Mast Cell Diseases in Practice and Research: Issues and Perspectives Raised by Patients and Their Recommendations to the Scientific Community and Beyond in The Journal of Allergy and Clinical Immunology: In Practice, an official publication of the American Academy of Allergy, Asthma, & Immunology (AAAAI). This article is available for all to read via ‘Open Access’. The Journal’s August issue theme is Contemporary Concepts in Mast Cell Disorders and was coordinated by Professor Peter Valent. TAMS, in collaboration with international partners, The Mast Cell Disease Society, Inc. (TMS), The UK Mastocytosis Support Group, Asociación Españolade Mastocitosis y Enfermedades Relacionadas (ADEM), the European Competence Network on Mastocytosis (ECNM), and the American Initiative in Mast Cell Diseases (AIM), proudly shares this publication which elaborates patient-identified needs for mast cell activation syndrome and separately for mastocytosis, and presenting recommendations for implementing change. This exciting project was presented at the 2020 ECNM Annual Meeting.
- In September 2022, TAMS launched a fundraising campaign to help to reach our target of $30,000 for the TAMS Research Fund. We have already raised over $7,000, so we are calling on you to help us raise another $23,000. All donations received via the TAMS Donation page between now and 31 December 2022 will be allocated to the TAMS Research Fund.
- TAMS was one of four patient advocacy groups (PAGs) globally invited to present to The European Competence Network on Mastocytosis (ECNM) at their annual conference in September. The conference was a hybrid event held in Basil Switzerland and online. All PAGs attended virtually. David Mayne and Kristin Sinclair presented on Perspectives of Australian Patient Support Groups with a focus on Addressing MCAS Diagnosis Concerns in Australia and globally.
- The Identifying International Needs session was presented virtually at The Mast Cell Disease Society’s 2022 Patient & Provider Symposium with Valerie Slee, Susan Jennings, Celeste Finnerty, Jess Hobart, Mercedes Martin and Kristin Sinclair.
- On 20 October, more than 150 landmarks and buildings across Australia and New Zealand lit up for TAMS’ third annual Spot Our Spots campaign, in recognition of the fifth annual International Mastocytosis and Mast Cell Diseases Awareness Day. TAMS would like to thank Committee Member Jess Perlibachas for her incredible efforts in coordinating this campaign.
- More to come…
- In February 2021, TAMS hosted a patient and family zoom call and Dr Jason Fok presented the initial mastocytosis results of our Mastocytosis and MCAS patient survey. Results will not be made public until survey results are published in 2022.
- Chair, David Mayne, represented TAMS at the first Virtual Rare Disease Day Parliamentary Event, hosted by the Parliamentary Friends of Australians Living with Rare Diseases in early March.
- TAMS updated its communications plan and now send a monthly e-newsletter to paid members as a member benefit.
- Continued support groups online, with 5 support groups held on Zoom in 2021
- Continued to provide up to date COVID-19 information, in line with ASCIA messaging
- Continued our medication availability campaign
- Launched a Mast Cell Disease fact sheet series about mast cell disease and common issues (questions to ask your doctor, hospitalisation and medication usage)
- Applied for a Government grant for rare disease support (better luck next time)
- Privately supported members and patients with support queries, and connected people to relevant doctors and advocated for access to medication
- Learnt more about potential drug trials coming to Australia
- Liaised with researchers on a number of exciting projects
- Commenced co-authoring a patient support group perspective paper on international patient issues with other MCD support groups
- Attended a Rare Voices Australia Fundraising Education Webinar
- Participated in a consultation on rare diseases in Western Australia
- Attended The American Initiative in Mast Cell Diseases virtual conference
- TAMS hosted a patient and family zoom call and Francette Geraghty-Dusan presented the initial MCAS results of our Mastocytosis and MCAS patient survey. Results will not be made public until survey results are published in 2022.
- David Mayne represented TAMS at the European Competence Network on Mastocytosis annual meeting via Zoom
- Kristin Sinclair attended the RVA Conference
- AGM was held 26 September 2021 via Zoom
- Chair: David Mayne
- Vice-Chair: Kristin Sinclair
- Secretary: Heather Mayne
- Treasurer: Kristin Sinclair
- Ordinary member/support chair: Suzanne Dickinson
- Ordinary member: Pamela Mathieson
- Ordinary member: Liam Cochrane
- Ordinary member: Jess Perlibacas
- Launched our online education webinar series in October, with recordings available on request for paid TAMS members. Our initial webinar featured:
- Mastocytosis, MCAS and HaT 101 with Dr Celia Zubrinich, Consultant Physician with a special interest in all aspects of allergy.
- Coping with a chronic illness with Antonia Taylor, Coach, Counsellor and founding Director of Envision Services.
- The series will continue in 2022. Put these dates in your calendar.
- On 20 October, International Mastocytosis and Mast Cell Diseases Awareness Day, 103 landmarks and venues across Australia lit up to raise awareness of mastocytosis and mast cell diseases.
- TAMS Vice-Chair continued her role as co-coordinator of the Mastocytosis and Mast Cell Diseases Awareness Day committee with committee founder, Mercedes Martin from Spain.
- TAMS developed a ‘Working with Pharmaceuticals Policy’ to support future fundraising plans for TAMS programs.
- Our new medical advisory committee chair is Dr Celia Zubrinich, Allergy, Sleep and Respiratory Physician, the Alfred Hospital.
- Taylah Kelly hosted a local community freestyle motor cross exhibition and generously donated all of the monies raised to TAMS
- Fielded COVID-related queries
- Moved support groups online, with five support groups held on Zoom in 2020
- 2020 conference was postponed due to the COVID-19 pandemic
- AGM was held 6 September 2020 via Zoom with new committee members including:
- Chair: David Mayne
- Vice-Chair: Kristin Sinclair
- Secretary: Heather Mayne
- Treasurer: Kristin Sinclair
- Ordinary member/support chair: Suzanne Dickinson
- Ordinary member: Pamela Mathieson
- Ordinary member: Liam Cochrane (returning)
- Ordinary member: Suzie Ammerer
- Ordinary member: Jess Perlibacas (new)
- Medication availability campaigns were run re ranitidine and replacement medications
- TAMS Research Committee ran its first Australia-wide Mastocytosis and MCAS patient survey, led by Dr Jason Fok, David Mayne and Francette Geraghty-Dusan
- Launched the inaugural ‘Spot our Spots’ campaign in Australia, to coincide with the third annual Mastocytosis and Mast Cell Diseases Awareness Day on 20 October 2020. Almost 60 landmarks lit up purple across Australia! Thank you to all of the wonderful supporters at each landmark, lighting companies and volunteer photographers and drone operators for your incredible support and efforts.
- David Mayne represented TAMS at the European Competence Network on Mastocytosis annual meeting via Zoom
- TAMS Vice-Chair was elected co-coordinator of the Mastocytosis and Mast Cell Diseases Awareness Day committee with committee founder, Mercedes Martin from Spain.
- TAMS digital brochure
- Hosted a Special General Meeting on 19 May 2019 to ratify wording in the constitution
- TAMS adopted the spotted quoll, previously an unofficial mascot, as its official mascot, and sold spotted quolls at the Canberra conference to raise awareness and funds for mast cell disease
- TAMS joined a round table discussion in April 2019 with ASCIA allergy and immunology National Allergy Strategy (NAS)
- Face to face support groups in Brisbane chaired by Suzanne Dickinson, Perth chaired by David Mayne and Cindy Cluett, Canberra (part of our annual conference) and Melbourne chaired by Pamela Mathieson
- TAMS was awarded DGR status on 1 July 2019
- TAMS Chair David Mayne and committee member Cindy Cluett represented TAMS at the 29th Annual Conference of the Australasian Society of Clinical Immunology and Allergy (ASCIA) in Perth, 3-7 September 2019. TAMS was an invited exhibitor.
- Seventh TAMS Conference, held in Canberra, 27-29 September 2019, with speakers including:
- Professor Connie Katelaris AM
- Professor Pete Smith
- Associate Professor, Dr Katrina Randall – Staff Specialist, Immunology, Canberra Hospital
- Dr Anne Swain – Head Dietician, Royal Prince Alfred Allergy Unit
- Dr Coralie Wales, Chronic Pain Australia
- Dr Catherine Drummond – Dermatologist, Sydney and Canberra
- AGM was held 29 September 2019:
- Chair: David Mayne
- Vice-Chair: Kristin Sinclair
- Secretary: Heather Mayne
- Treasurer: Kristin Sinclair
- Ordinary member/support chair: Suzanne Dickinson
- Ordinary member: Pamela Mathieson
- Ordinary member: Cindy Cluett
- Ordinary member: Suzie Ammerer (new)
- We recognised the second annual Mastocytosis and Mast Cell Diseases Awareness Day on 20 October 2019 with a national online support group and a face to face group in Perth.
- TAMS member Meg attempted to climb Mera Peak in the Himalaya with Mastocytosis and raise awareness of and funds for mast cell disease
- Face to face support groups held in Melbourne chaired by Claire Ellis and Pamela Mathieson
- No mini-conference was held, planned to be held in Adelaide, but cancelled due to low numbers
- TAMS Chair David Mayne, Secretary Heather Mayne and Vice-Chair Kristin Sinclair, represented TAMS at the 29th Annual Conference of the Australasian Society of Clinical Immunology and Allergy (ASCIA) in Canberra, 4-8 September 2018. TAMS was an invited exhibitor.
- TAMS Chair David Mayne and Vice-Chair Kristin Sinclair represented Australia on the new Mastocytosis and Mast Cell Diseases Awareness Day committee, resulting in the formation of the first annual Mastocytosis and Mast Cell Diseases Awareness Day on 20 October 2018
- National Allergy Strategy (NAS) funding continued with TAMS attending the announcement
- TAMS build the Awareness Day website
- TAMS Vice Chair Kristin Sinclair represented TAMS at Rare Voices Australia’s (RVA) invitation-only biannual 2018 National Rare Disease Summit in Melbourne
- TAMS AGM was held on 8 December 2018 via Zoom with the following roles assigned:
- Chair: David Mayne
- Vice-Chair and Treasurer: Kristin Sinclair
- Secretary: Heather Mayne
- Ordinary member/support chair: Suzanne Dickinson
- Ordinary member: Pamela Mathieson
- Ordinary member: Liam Cochrane
- Ordinary member: Cindy Cluett
- Launch of new TAMS website
- New TAMS logo to reflect our growing national and international presence and work, and align with a more recognised colour for mast cell disease – purple.
- TAMS print brochure for doctors, family and friends
- TAMS Chair David Mayne and Secretary Heather Mayne represented TAMS at the 28th Annual Conference of the Australasian Society of Clinical Immunology and Allergy (ASCIA) in Auckland New Zealand, 13-15 September 2017. This trip was a self-funded trip. TAMS was an invited exhibitor.
- First Rare Disease Symposium to further educate doctors and specialists from GPs, Immunologists, Haematologists and Dermatologists on 6 October.
- Hosted by TAMS and Campbelltown Hospital/Western Sydney University
- Convened by Professor Connie Katelaris
- Guest speakers included:
- Dr Clive Grattan MA, MD, FRCP; consultant Dermatologist (UK)
- Dr Graham Mackay, University of Melbourne
- Associate Professor Stephen Fuller, Clinical Haematologist, Nepean Hospital
- Dr Li-Chuen Wong, Consultant Paediatric and Adult Dermatologist
- Sixth annual Australasian Mastocytosis Conference, held in Sydney, 6-8 October 2017 with speakers including:
- Dr Clive Grattan, Consultant Dermatologist MA, MD, FRCP from the UK
- Professor Connie Katelaris – Sydney
- Dr Celia Zubrinich – Melbourne
- Associate Professor Richard Loh – Perth (Paediatric)
- RN Maria Said – Allergy & Anaphylaxis Australia
- Anne Swain, Dietician, RPA
- Dr Natalie Green, Clinical Psychologist
- Cassandra Balinas & Dr Cabanas; Griffith University, QLD
- TAMS AGM was held on 8 October 2017 in Sydney with the following roles assigned:
- Chair: David Mayne
- Vice-Chair and Treasurer: Kristin Sinclair
- Secretary: Heather Mayne
- Ordinary member/support chair: Suzanne Dickinson
- Ordinary member: Pamela Mathieson
- Ordinary member: Liam Cochrane
- Ordinary member: Cindy Cluett (new)
- TAMS Research Committee was formed comprising an epidemiologist and three well-known Immunologists/ Allergists (WHO), led by Chair David Mayne
- TAMS Chair David Mayne represented Australia at the European Competence Network Meeting (ECNM) on Mastocytosis in a self-funded trip to Paris
- TAMS Kids brand was created
- TAMS was registered with the Australian Charities and Not-for-profits Commission (ACNC)
- Third March for Masto walk-a-thon to raise funds for TAMS and mast cell disease was held in Sydney and Melbourne on 28 February 2016 in recognition of Rare Disease Day
- TAMS Chair David Mayne and Vice-Chair Claire Ellis represented TAMS at the 27th Annual Conference of the Australasian Society of Clinical Immunology and Allergy (ASCIA) in Gold Coast, 14-17 September 2016. TAMS was an invited exhibitor.
- Fifth annual TAMS Mini-Conference, held on the Gold Coast, Qld, 16-18 September 2016 with speakers including:
- Petrea King, Founding Director and CEO of the Quest for Life Foundation
- Dr Celia Zubrinich FRACP
- Dr Velencia Soutter, Paediatrician Allergist, MBBS FRACP (Paed)
- Professor Donald Staines, Griffith University Researcher
- TAMS members participated in a Griffith University Research Project, providing blood donations to help gain a better understanding of the role mast cells play in Chronic Fatigue Syndrome (CFS) and Mastocytosis.
- The TAMS AGM was held on 18 September with the following roles assigned:
- Chair: David Mayne
- Vice-Chair and Treasurer: Kristin Sinclair
- Secretary: Heather Mayne
- Ordinary member/support chair: Suzanne Dickinson
- Ordinary member: Pamela Mathieson
- Ordinary member: Liam Cochrane (new)
- The TAMS Committee bid farewell to Claire Ellis as Vice Chair
- Face to face support groups held in Melbourne, Perth and Sydney
- TAMS joined Rare Voices Australia
- Launched a members-only section of the TAMS website for TAMS paid members to chat and share resources (despite our best efforts engagement levels led to this being closed in 2017)
- Second March for Masto walk-a-thon to raise funds for TAMS and mast cell disease was held in Sydney and Melbourne on 28 February 2015 in recognition of Rare Disease Day
- Fourth annual Australasian Mastocytosis Conference, held in Sydney, 1-3 May 2015 with speakers including:
- Professor Theoharis Theoharides – USA
- Professor Connie Katelaris – Sydney
- Associate Professor Sheryl Van Nunen – Sydney
- Dr Celia Zubrinich – Melbourne
- Associate Professor Richard Loh – Perth (Paediatric)
- Professor Pete Smith – QLD
- Dr Velencia Soutter – RPAH Sydney + QLD
- Professor Glenn Reeves – Newcastle + Gosford
- RN Maria Said – Allergy & Anaphylaxis Australia
- Mishele Cunningham, TMS education chair and RN (USA)
- TAMS Chair David Mayne and Vice-Chair Claire Ellis represented TAMS at the 26th Annual Conference of the Australasian Society of Clinical Immunology and Allergy (ASCIA) in Adelaide, 9-12 September 2015. TAMS was an invited exhibitor.
- TAMS held its AGM via webinar on 20 December 2015 with the following roles assigned:
- Chair: David Mayne
- Vice-Chair and Treasurer: Claire Ellis
- Secretary: Heather Mayne
- Ordinary member/support chair: Suzanne Dickinson
- Ordinary member: Pamela Mathieson (new)
- Ordinary member: Kristin Sinclair (rejoining after a 18 month absence due to ill-health)
- Face to face support groups held in Melbourne and Sydney
- Third annual Australasian Mastocytosis Conference, held in Melbourne, 2-4 May 2014 with speakers:
- Mishele Cunningham, Registered Nurse, BSN, PHN, Patient Referral Coordinator, TMS’ Education Chair and Medical Conference Chair, USA
- Professor Jo Douglass, Head of the Department of Clinical Immunology and Allergy at the Royal Melbourne Hospital
- Lynda Katona – Clinical Psychologist- Manager of Psychology services at Alfred Health Melbourne
- Dr Celia Zubrinich, Allergy, Sleep and Respiratory Physician, the Alfred Hospital
- Amanda Cane, Dietician
- First March for Masto walk-a-thon to raise funds for TAMS and mast cell disease was held in Melbourne, on 3 May 20214
- TAMS members participated in a research project for rheumatoid arthritis, comparing viable and similar markers between rheumatoid arthritis and mast cell degranulation.
- TAMS AGM was held at the end of the conference with the following roles assigned:
- Chair: David Mayne
- Vice-Chair and Treasurer: Claire Ellis
- Secretary: Heather Mayne
- Ordinary member/support chair: Suzanne Dickinson
- Ordinary member: Leisa McKenna
- Ordinary member: Monique Hawkins
- Face to face support groups held in Melbourne chaired by Claire Ellis, Brisbane chaired by Roger Van Twest, Perth chaired by Shirley Phillips and New Zealand chaired by Monique Hawkins
- TAMS Chair David Mayne and Vice-Chair Claire Ellis represented TAMS at the 25th Annual Conference of the Australasian Society of Clinical Immunology and Allergy (ASCIA) in Sydney, 10-13 September 2014. TAMS was an invited exhibitor.
- TAMS supporter Robyn generously crocheted 50 Masto Moggies to sell to raise money for TAMS. These were sold at conferences and events and sported a blue crocheted ribbon on each moggie (our original brand was navy).
- After many requests, we launched the Mastocytosis Australasia Carers (MAC) Facebook Support Group in March 2013.
- Conducted a TAMS member survey, with results presented at the second annual Australasian Mastocytosis Conference
- TAMS print brochure for doctors, family and friends
- Second annual Australasian Mastocytosis Conference, held in Port Macquarie, 12-14 April 2013 with speakers:
- Dr Constance H Katelaris Senior Consultant, Department of Clinical Immunology, Allergy and Paediatrics, Westmead Hospital, Sydney
- Peter Clark Accredited Practising Dietician, Nutritionist & Sports Dietician
- Mishele Cunningham, Registered Nurse, BSN, PHN, Patient Referral Coordinator, TMS’ Education Chair and Medical Conference Chair, USA
- Patricia Baggiato, USA (Skype)
- Dr Natalie Green, Psychologist
- Professor Green Reeves (Skype)
- Professor Theoharis Theoharides – USA (Skype)
- Dr Joseph McMahon
- Luke Van Twest
- TAMS AGM was held at the end of the conference
- Chair: David Mayne
- Vice-Chair and Treasurer: Claire Ellis
- Secretary: Heather Mayne
- Ordinary member/support chair: Kristin Sinclair
- Ordinary member: Suzanne Dickinson
- Ordinary member: Leisa McKenna
- Ordinary member: Monique Hawkins
- Face to face support groups in Melbourne chaired by Claire Ellis, Brisbane chaired by Roger Van Twest, Perth chaired by Shirley Phillips and Sydney chaired by Kristin Sinclair.
- TAMS Chair David Mayne and Vice-Chair Claire Ellis represented TAMS at the 24th Annual Conference of the Australasian Society of Clinical Immunology and Allergy (ASCIA) in Perth, 11-13 September 2013. TAMS was an invited exhibitor.
- Co-founded by David Mayne, Claire Ellis and Kristin Sinclair with support, as always, from Heather Mayne
- Incorporated as an Association on 24 January 2012
- First Committee meeting: January 2012 (approx)
- First Committee was made up of:
- Chair: David Mayne
- Vice-Chair: Claire Ellis
- Secretary: Heather Mayne
- Treasurer: Claire Ellis
- Ordinary member/support chair: Kristin Sinclair
- Ordinary member/marketing: Jodie Holman
- Ordinary member/marketing: Jenn Herd
- TAMS print brochure for doctors, family and friends
- Our initial medical advisory committee was:
- Dr Constance H Katelaris Senior Consultant, Department of Clinical Immunology, Allergy and Paediatrics, Westmead Hospital, Sydney
- A/Prof Richard Loh Immunology, Paediatrics
- Dr Andrew Wei The Alfred Hospital, Melbourne
- Inaugural TAMS Conference held in Port Macquarie, 13-15 April 2012 with guest speakers including:
- Dr Andrew Wei The Alfred Hospital, Melbourne
- Peter Clark Accredited Practising Dietician, Nutritionist & Sports Dietician
- A/Prof Richard Loh Immunology, Paediatrics
- Dr Constance H Katelaris Senior Consultant, Department of Clinical Immunology, Allergy and Paediatrics, Westmead Hospital, Sydney
- Dr Norton Greenberger MD, BWH
- Dr Mariana Castells MD, PhD, BWH (pre-recorded)
- Dr Theoharis Theoharides MD, PhD, Tufts University Medical School (pre-recorded)
- Valerie Slee Registered Nurse, Chair of The Mastocytosis Society
- Dr Natalie Green, Clinical Psychologist
- Masto Man was debuted – on TAMS t-shirts along with TAMS pens.
- AGM was held at the end of the conference with new committee members:
- Chair: David Mayne
- Vice-Chair and Treasurer: Claire Ellis
- Secretary: Heather Mayne
- Ordinary member/support chair: Kristin Sinclair
- Ordinary member/marketing: Jodie Holman
- Ordinary member: Suzanne Dickinson
- Launched the TAMS website
- Held our first support groups in Melbourne chaired by Claire Ellis, Brisbane chaired by Roger Van Twest and Perth chaired by Shirley Phillips
- Sent the first issue of the TAMS eNews on 2 October 2012
- Took over the Australasian Mastocytosis Patient Support Group on Facebook (launched earlier by Claire Ellis)
- In November 2012, the Australasian Society of Clinical Immunology and Allergy (ASCIA) listed TAMS as an ‘official patient organisation’ on the ASCIA website.
Throughout this time, most importantly, we have provided support to those who are searching for answers to their mast cell disease questions via phone, email and our face to face and online support groups.
