Palliative Care & Advance Care Planning
Turning lived experience into better care
FSHD Global funds research into palliative care and advance care planning
For people living with FSHD, managing the disease can involve much more than muscle weakness and physical disability. As FSHD progresses, people and their families may face complex decisions about symptom management, acute illness, treatment options and future care.
Yet there is limited research and guidance to help people with FSHD navigate these challenges.
FSHD Global Research Foundation is working to change that, funding new research into advance care planning and palliative care for people living with FSHD—an area of significant unmet need identified by the FSHD community itself.
The need for this work became particularly clear through the experience of FSHD Global Founder and Patron, Bill Moss AO, who faced the complexities of managing an acute illness alongside advanced FSHD. His experience highlighted the challenges that can arise when a person with FSHD develops another serious or acute health condition, including how to navigate treatment and care decisions when multiple health needs intersect.
Following Bill’s experience, FSHD Global spoke with other people living with FSHD and their families. It became clear that this was not an isolated experience. There was a broader need for better information, support and evidence around advanced disease, symptom management, advance care planning and palliative care.
These issues were subsequently raised by patients and families as an area of unmet need at the 32nd Annual International Research Congress in Amsterdam.
Building the evidence to improve care
In response, FSHD Global has been working in partnership with FSHD Europe to support the development of a research framework that can ultimately help guide people living with FSHD, their families, clinicians and the broader healthcare community.
FSHD Global is proud to have funded PhD student, Riemke Rebel, to undertake this work under the guidance of Professor Nicol Voermans and Dr Stacha Reumers through Radboud University Medical Centre.
We are also grateful to FSHD Stichting, NL, for its funding contribution towards this grant for a PhD student.
Professor Voermans, a neurologist at Radboud University Medical Centre and the project's primary investigator, says the research has the potential to change how care is approached for people living with FSHD.
“Integrating advance care planning and palliative care early—not only at the end of life—has the potential to improve symptom management, support decision-making, reduce uncertainty for families, and ensure that individuals with FSHD receive care that is both person-centred and dignified. This will become even more important when specific therapies become available.”
Professor Derek Willis of the University of Chester, who will contribute his expertise to the project, says research in this area is urgently needed.
“Advance care planning and palliative care remain underexplored and often underutilised among people with FSHD. Research in this area is essential to better understand when and how these conversations should take place, how care can be aligned with patients’ values and goals, and how quality of life can be preserved throughout the disease course.”
Supporting people to live well with FSHD
Importantly, palliative care is not only about end-of-life care.
For people living with a progressive condition such as FSHD, palliative care can play an important role in living well with the disease, including managing symptoms, addressing quality-of-life concerns and supporting people and families through periods of serious or acute illness.
Advance care planning can also help people consider what matters most to them and communicate their preferences for future care, giving families and healthcare professionals a clearer understanding of their wishes when difficult decisions arise.
The goal of this research is to build the evidence needed to develop practical guidance that improves care for people with FSHD and supports families and healthcare professionals.
For FSHD Global CEO, Emma Weatherley, investing in this work is an important part of the Foundation's responsibility to the FSHD community.
“Our community told us there was a real gap in information and support around managing advanced disease, planning for future care and making difficult healthcare decisions. Research organisations have an important role in responding to the needs identified by the people we serve.“
While we continue to invest in treatments that can change the future of FSHD, and that remains an urgent priority, we must also invest in research that helps people live as well as possible with FSHD today.
“This project is about turning lived experience into evidence, and evidence into better care.” – Emma Weatherley, FSHD Global Managing Director
Participate in our Survey on Advance Care Planning and Palliative Care in FSHD
People living with Facioscapulohumeral Muscular Dystrophy (FSHD) are invited to take part in an international survey exploring Advance Care Planning and palliative care. This study is being conducted by Radboud University Medical Centre in the Netherlands, in collaboration with FSHD Global, FSHD Europe and FSHD Stichting.
The aim of this survey is to better understand what matters most to people with FSHD regarding their current and future care. Researchers would like to learn more about patients’ experiences, their care preferences, and the support they may need as their condition evolves.
Advance Care Planning is the process of reflecting on and discussing your future healthcare wishes and personal care preferences. Palliative care focuses on improving quality of life by preventing and relieving suffering and providing support for patients and their families at any stage of the disease.
The survey is anonymous, voluntary, and takes approximately 20 minutes to complete. Please note that because responses are anonymous, it is not possible to save your progress and continue the survey at a later time. No directly identifying personal information is collected.
Help improve FSHD care
Thank you for considering taking part in this survey. By sharing your experiences, you will help improve understanding of the care needs of people living with FSHD. For questions or comments, please contact the research team at: FSHDonderzoek@radboudumc.nl