Today is European Myeloma Day!
Join us, along with MPE members, the patient community, clinicians and stakeholders, as we come together to shine a spotlight on myeloma early diagnosis, address crucial concerns for European patients, share patients’ experiences and collaborate on solutions. Read more about European Myeloma Day and the goals of the patient community here. European Myeloma Day – Myeloma Patients Europe (mpeurope.org)
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
Thank You
Our 2023 Wild Myeloma Way Cycle took place on Friday 15 September and Saturday 16 September 2023. It was a great success – thanks to all who raised funds and participated.
More information on the event to follow
2023 Current News
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.
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
12 women including MMI Board members Fionnuala and Ann along with Gina and Fiona MM patients plus family and friends – Sarah, Phil, Julie, Madeleine, Paula, Jilly, Vourneen and Raquel donned our Myeloma Ireland T shirts and completed the 10k in style! We all had a great day and though it was very sunny a gentle breeze and plenty of water stops kept us cool and hydrated. We all stayed together (except Sarah who ran it!) and got great exposure including mentions by the MC at the start and at the end. We have also raised €3,751 – lets see if we can raise a bit more to get it to € €4000!
Big Congratulations To All Who Took Part In Our 2022 Cycle
2022 Myeloma Cycle
Congratulations to all who took part in our 2022 wild myeloma way cycle. It was terrific fun and we look forward to another great event in 2023.
Some of those who took part…
Shane Ryan
Driving greater awareness of Multiple Myeloma
For many years I have worked in an organisation that is committed to researching and providing treatments for MM patients. This is a great responsibility and challenge. I’m doing this cycle to drive greater awareness of Multiple Myeloma and support the great work that MMI do to support patients, families and carers ensuring the best possible access to information, education, support, care and treatment.
Mary Kelly
Raising awareness on behalf of the Midlands Multiple Myeloma patients
Mary is Haematology ANP at Midland Regional Hospital, Tullamore. She is a founding member of MMI and is Midlands Myeloma Support Group leader. Mary is taking part again in the cycle on behalf of the Midlands patients to raise awareness and funds towards MMI activities.
Oonagh MacMahon
In memory of mam
In 2019, we both did the cycle while our mum was very terminal with Multiple Myeloma, she died 2 months later, but was incredibly proud of the cycle. The whole event was so therapeutic for us both, and although at the time, we were both emotionally and psychologically drained, the support and camaraderie we encountered was unbelievable. Anyway, we’re doing it this year for mum, and for all those who are battling with this awful cancer.
Mum was from West Clare and we spent a lot of time in Spanish Point, so this will be extra special for us.
Amy O’Shaughnessy
In support of my brother Richard
I’m doing the Wild Myeloma Way in support of my brother Richard who was diagnosed in February this year. Within 24 hours he went from a regular life to having to stop work and receive treatment. At the time of the spin, all going to plan, he will have had his stem cell transplant in Galway. Fingers crossed he will be on the mend and looking forward to a bright future. It’s great to know that he’ll be able to avail of the services and support of MMI.
I look forward to joining my ‘multiple’ friends in September for our wild adventure.
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.