
What Will It Take to Cure ALD? Introducing Our Pathway to a Cure
For individuals living with adrenoleukodystrophy (ALD), and the families who love and care for them, few things offer more hope than the possibility of a cure.
Our core mission at ALD Connect is to improve health outcomes for individuals affected by ALD and, ultimately, to find a cure.
A cure will not come from a single discovery or a single source. It will require people from different areas of research, fields of study and geographic regions to come together, work together and make what was once impossible possible.
We understand the questions that need to be answered and the progress that needs to be made. And we are bringing together the world’s largest network of ALD researchers, clinicians and community members around one shared mission.
Now, to give our community a clearer view of that journey – and the progress being made across areas of research, from understanding the fundamental biology of ALD to predicting who will develop disease – we have created our Pathway to a Cure.
The Pathway is a patient-prioritized research agenda that provides a clearer picture of what we know about ALD, the important questions that remain unanswered and the research needed to move us closer to better treatments and, ultimately, a cure.
What will it take to cure ALD?
Research into ALD is taking place across the world. Scientists and clinicians are studying the underlying biology of the disease, investigating why ALD affects people differently, searching for earlier signs of disease progression, identifying potential therapeutic targets and developing new approaches to treatment.
Our Pathway to a Cure brings these different areas of work together in one framework.
It identifies ten interconnected stages in the research journey, beginning with defining the fundamental biology of ALD and understanding what initiates disease. From there, the Pathway addresses some of the biggest questions facing the ALD research community.
Why do some people develop cerebral ALD while others do not? Can we identify biological signals before disease is visible on an MRI? Can we predict an individual’s risk and when disease might develop? Which biological pathways should treatments target? Can therapies become safer, more effective and more personalized?
Importantly, the Pathway also looks beyond stopping disease progression. It considers the research needed to understand whether damage can be repaired, neurological function can be restored and, ultimately, whether ALD can be prevented or cured.
This means our Pathway to a Cure is centred around our entire community, regardless of the stage of ALD an individual is living with today.
Everyone has a role in the Pathway to a Cure
Reaching a cure will require collaboration across the entire ALD community.
Patients and families bring essential lived experience. Researchers and clinicians bring scientific and medical expertise. Industry can help translate discoveries into new therapies. Advocacy organizations, funders, donors and supporters can provide the resources, connections and momentum needed to move promising research forward.
Our Pathway to a Cure gives all of us a clearer view of the road ahead. Crucially, it also helps us understand the role we can each play in reaching the end of that road.
There is still much to discover. But there is also enormous reason for hope. We have a growing global community working together, a clearer understanding of the questions that need to be answered and, now, a Pathway that shows us where we need to go next.
Explore our Pathway to a Cure to see where ALD research stands today, what still needs to be discovered and how, together, we can move closer to a cure.