Susie Novis Durie Educational Grants Awarded at the 2022 GMAN Summit
By Serdar Erdoğan
IMF Director, GMAN and European & Middle Eastern Patient Programs
The 2021 Susie Novis Durie (SND) Grants Were Awarded To:
Austria (Powerful Against Cancer)
Austrian organization Myelom Lymphom Hilfe Österreich had an online training session which served as a guide for patients on how to exercise at home. This training also nourished the feeling of being in a community and being part of something that goes beyond the confines of one’s home.
The goal was to motivate patients by creating a sense of community through exercising with those affected by the same diagnosis. By going beyond the confines of one's home, "Fit despite Cancer" helps participants feel that they are not alone in their cancer journey and fosters a sense of belonging and connectedness among myeloma patients throughout the German-speaking world.
For this project, Dr. Richard Crevenna explained the benefits of regular exercise, and the necessary precautions that need to be taken so as not to endanger oneself. Patients with multiple myeloma need to be especially careful in taking care of their bones.
Top triathlete, trainer, and host of the daily "Fit mit Philipp" (Fit with Philipp) TV show, Philipp Jelinek has what it takes to entice people of all ages to join in, regardless of nationality or location.
In conclusion, Dr. Crevenna again emphasized some medical facts about working out with multiple myeloma/polyneuropathy. He reminded the audience to regularly revise their exercises. All exercises are available on the Myelom Lymphom Hİlfe Österreich website.
Croatia (Pathway to Clinical Trials in MM in South Eastern Europe)
Croatian organization Mijelom CRO created another project for SND Grants. “Pathway to Clinical Trials in MM in South East Europe” aims to gain a deeper understanding of the present situation in South East Europe (SEE) countries, identify barriers, and define possible pathways to improving access to a greater number of clinical trials in the SEE region.
At the initial stage, the current situation in Croatia and other countries in the region were analyzed. Secondly, an online meeting with experts and stakeholders was organized to better understand major needs and key barriers. The online discussion brought many questions and generated several ideas related to Balkan countries such as Bosnia Herzegovina, Croatia, Greece, Macedonia, Montenegro, Romania, Serbia, and Turkey. Characteristics of the trials, priorities, legal requirements, and access barriers were the main topics tackled by the attendees.
Israel (Raise Awareness Among Arabic Patients)
Israeli organization AMEN proposed a project that breaks language barriers. “Raise Awareness Among Arabic Patients” aims to produce communication materials to raise awareness of myeloma: translations, digital campaigns, an info line in Arabic, and interviews with Arabic-speaking hematologists and experts.
The Arab population actively uses social media but needs more awareness about patient rights and on whom to seek relevant response from. Every translated material (including the IMF’s Patient Handbook) would be very useful for newly diagnosed patients.
Another goal of the project is to raise awareness of early diagnosis and treatment of multiple myeloma among family doctors and orthopedists. The project continues to work in achieving its multi-targeted long-term quantitative objectives with online resources being distributed by AMEN facilities.
Portugal (Website Tool – Healthcare Professionals Answers)
The Portuguese organization, Associaçao Portuguesa Contra A Leucemia (APCL) was awarded a SND Grant for their online project, “Website Tool- Healthcare Professional Answers.” The project is an integrated platform on the APCL website which allows patients and caregivers to ask questions and get answers from various health professionals working in the field of myeloma: hematologists, nutritionists, dermatologists, social workers, nurses, and psychologists.
The tool is not intended to replace medical advice and should be used for informational purposes only to address specific concerns that patients may have. The program helps patients and caregivers have stronger communication with myeloma experts via a digital channel. APCL will be measuring the effectiveness of the tool through adherence rate and participant surveys.
The Susie Novis Durie Educational Grants were created to help member organizations of the IMF’s Global Myeloma Action Network (GMAN) increase education, awareness, and access to treatment.