Welcome to Multiple Myeloma Ireland

Helping Improve Diagnosis & Improve Lives

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Welcome

Multiple Myeloma Ireland is the only charitable organisation in Ireland focused exclusively on supporting patients, families and carers with Multiple Myeloma and related conditions. Multiple Myeloma Ireland is also a member of Myeloma Patients Europe (MPE), the umbrella organisation of multiple myeloma and AL amyloidosis patient groups and associations from across Europe.

Although myeloma is the second most common form of blood cancer, it only represents 1% of cancers. On average 384 patients in Ireland are diagnosed with Multiple Myeloma each year – based on the most recent figures published by the National Cancer  Register.  Many people have never heard of myeloma, so being given a diagnosis of myeloma can be quite alarming. You and your family may have a lot of questions about myeloma: how it may affect you, what treatments you may have, and how much or how little will change in what you are able to do.  Information plays an important role in helping come to terms with a myeloma diagnosis and understanding options around treatment, care and living well with myeloma.

As a voluntary organisation we do everything we can to help patients, and their support network, to get a better understanding of their disease, and to ensure all patients get access to the best possible information, support, care, and treatment. Raising awareness about Multiple Myeloma and related conditions is core to what we do, and it is a strategic imperative for our organisation.

We don’t just provide resources and support for patients, but also for healthcare professionals – offering grants to support research to develop new treatments and improvements in clinical practice.

From diagnosis through to common complications, Multiple Myeloma Ireland is here to help you find all the information you need to help you better understand myeloma and related conditions.

As part of our fundraising and awareness campaign we are delighted to be able to share with you details of the Third Multiple Myeloma Ireland ‘Wild Myeloma Way Cycle‘ that will take place on September 15th and 16th this year. Participants will include Health Care Professionals, Multiple Myeloma Patients and families, Pharmaceutical industry members, and the general public. It promises to be an exhilarating, but challenging event, dedicated to raising awareness about Multiple Myeloma.

2023 Wild Myeloma Way Cycle

Congratulations

Our 2023 Wild Myeloma Way Cycle took place on  Friday 15th and Saturday 16th of September 2023. It was a great success – thanks to all who raised funds and participated.

2023 Current News

Reminder

Multiple Myeloma Ireland AGM
Wednesday, November 22nd 2023
Aisling Hotel, Dublin
@ 6.30 pm

The meeting will also be available for virtual attendance via Zoom

Join Zoom Meeting
https://us02web.zoom.us/j/84761735615?pwd=OSs3c09LQ1J6RkYwOHc0WTh1eCtYZz09

Meeting ID: 847 6173 5615

Passcode: 912234

Note while the link  will be available from 6pm the meeting start time is 6.30pm. 

All welcome including patients, caregivers, and health practitioners.

Janssen Visit

On June 13th, 2023, Mary Kelly ANP, Fionnuala Duffy and Ann Fleming (patients), board members of MMI were delighted to be involved in a Patient Event at the Janssen Ringaskiddy Plant in Cork.
It was an interesting, and informative day. We were made to feel very welcome and met so many different people from different areas, who work in various aspects of the pharmaceutical plant.
It was fascinating to see the production suites and to learn about the intricate and complex process involved in making these cutting-edge new drug treatments for Myeloma. We witnessed the dedication, enthusiasm, and attention to precision and safety at all levels at Janssen. From research, to packing and transporting the product, everyone plays a crucial role in cancer survival. We also took part in a Q and A session to help staff gain a patient perspective on living well with myeloma.

Upcoming Events

Artwork by Vincent Devine will be displayed to the public for Science Week.

Scientific Research, Art and Myeloma, what’s the connection?

Over last number of years some patients and board trustees have as part of PPI (Public Patient Involvement in research) been participating in a research project led by PhD student Rebecca Sheridan at UCD/ Conway Institute. Those involved liaised with Rebecca via Zoom during the pandemic and visited the Conway Institute where there was a tour of the labs and a presentation from Rebecca.

Following on from this the Conway Institute contacted Multiple Myeloma Ireland about a World Cancer Day (Feb 4th 2023) project with Vincent Devine, artist in residence at the Institute. Vincent is a renowned artist responsible for the Triptych of Vicky Phelan.

Vincent has worked with 15 cancer researchers in the Conway Institute, as well as someone with a lived experience of cancer, to create an intriguing artwork representing the complex and varied aspects of cancer at various levels (human, tissue, cellular and molecular).

Ann Fleming a board trustee and myeloma patient was interviewed by Vincent at UCD to discuss her myeloma story and her involvement with research. The artwork entitled ‘The Vitruvian: Uncovering the Layers of Cancer’ was unveiled and publicly displayed for the first time at the UCD Festival in June.

In conjunction with Science Foundation Ireland, this work will be displayed to the public during Science Week (12th-19th November). There will be two exhibition venues, the Esker Arts Centre, Tullamore on the 15th November, from 5.30 culminating in a panel discussion session, and at Dundrum Town Shopping Centre 16th -19th.

The Dublin Multiple Myeloma Support Group will have an informal coffee meet up, in Dundrum Shopping Centre on Thursday Nov 16th @12noon.  Meeting outside on the plaza near Dunne and Crescenzi beside the cinema entrance. We can view “The Vitruvian “in the shopping centre after coffee. All welcome.

Multiple Myeloma Ireland Nurses Educational Day.

Thanks to everyone who made our 2023 Nurses Educational Day a success.  To review a video of the talks,  please click on the review videos button below. 

AIB Pedal & Pie 2023

A big thank you
To AIB staff
who biked or hiked and helped raise €2622 for Multiple Myeloma Ireland

MPE Masterclass 2023

28 – 30 April 2023 – Dubrovnik, Croatia 

Fionnuala Duffy, Niamh Murray and Ann Fleming as Multiple Myeloma Ireland Board members and patients attended the 2023 Myeloma Patients Europe Masterclass. The Masterclass comprised of plenary, breakout and panel discussions aimed at increasing the knowledge and skills of members, and discussed challenges faced by the patient community, ways to address them and sharing the latest treatment updates. Topics included Myeloma and Amyloidosis updates, fundraising for patient organisations, optimising the Myeloma pathway and the importance of physical exercise for multiple myeloma and amyloidosis patients. 

We also presented a poster on our award-winning podcast series and there was a great deal of interest from all attendees. 

The  recordings of the presentations from the  2023 and 2022 Masterclasses  can viewed in the link below.

VHI Women’s Mini Marathon June 2023 Update 

Thank You 

Many thanks to the patients and friends and family who donned Myeloma Ireland T shirts and completed the 10k in style! We raised €4000!

A big thank you to our supporters for their generous donations.

Patient Recruitment

Press Release

(CAR-T), CARTITUDE-5, Feb 1st 2023

 

MMI would like to inform patients that a new myeloma clinical trial for Janssen’s chimeric antigen receptor T-cell therapy (CAR-T), CARTITUDE-5, will begin in St James’s Hospital in Dublin in the new year. The trial is for people with newly diagnosed multiple myeloma for whom ASCT is not planned as an initial therapy.  

Geraldine Walpole, Chairperson of Multiple Myeloma Ireland, said: “This is a welcome development for newly diagnosed multiple myeloma patients in Ireland. Participation in the CARTITUDE-5 clinical trial may provide access to a much-needed cutting-edge treatment option. We hope this trial will ultimately contribute towards better treatment regimens for patients living with multiple myeloma.”  

Please click below button for more information on the trial

We Want You

You are invited to take part in an online survey

Award Winning Podcast

MMI is delighted to announce our Living with Multiple Myeloma Podcast Series has been awarded the Bullseye Award at the Irish Podcast Awards 2022. The Ceremony was held on September 16th 2022 at Liberty Hall, Dublin.

Our podcast series provides information and support for Irish Multiple Myeloma patients and their families. Each year in Ireland 350 new patients are diagnosed and over 2000 patients are living with Multiple Myeloma.
The series of 13 podcasts provides an overview of the patient journey, treatment options and supports available to patients and their families.

MMI are grateful to our host Maire Teresa Ni Cheallaigh, Greg @ Fuzion Communications and all our fantastic interviewees of patients and healthcare professionals for their contributions and support.

2023 Podcast Survey 

We Want Your Feedback

To help us learn more about how helpful you have found our podcast series and to inform further podcast episodes, we’ve launched a short survey. If you have a few minutes, please complete it by click the button bleow: 

The survey will close on Friday, 24th March 2023.