Meet ALD Connect’s New President: Dr. Keith Van Haren, MD
Dr. Keith Van Haren, a co-founder of ALD Connect, has spent nearly two decades dedicated to leukodystrophy care and research. In this interview, we asked Dr. Van Haren what inspired him to help launch ALD Connect, how he sees the organization’s mission and priorities evolving as he steps into the president role, and where he hopes to drive progress in research, partnership, and community engagement over the next 4 years.
What motivated you to co-found ALD Connect?
Co-founding ALD Connect goes back to 2012–2013. I had just finished residency and was still early in my career, but there was already a large, motivated ALD community, who all wanted a better way to connect with one another, engage with the scientific landscape, and push therapy development forward. It formed pretty organically out of a shared feeling of, “This is where we are right now—why can’t we build something that helps accelerate progress?” Many of the original founders are still involved today, and it’s remained a group of people who are dedicated to the same goal: improving the future for everyone affected by ALD.
How do you see your role evolving as you step into the president’s role from a board member’s role?
The big change is being able to help set vision and strategy for where we want ALD Connect to go over the next four years. In some ways, it’s a continuation of what we’ve been doing, but it’s also a moment to reflect on how much has changed. When we first founded ALD Connect, there were no approved therapies and very few trials. Bluebird’s work was just beginning, and there might have been only one other company in the pipeline. Now we have one FDA-approved therapy, and a pipeline with promising therapeutics moving towards clinical trial. It’s easy to lose sight of that progress when you’re in the day-to-day, but patient-centered organizations like this really do make a profound difference in getting treatments to families.
Looking ahead, I’m focused on increasing research funding, because that’s what we need to fund future treatment development and better the lives of those affected by ALD., I’m also focused on taking a global view, because many of the things we take for granted in the U.S., like newborn screening and access to approved treatments, are simply not available in other parts of the world.
How would you describe ALD Connect’s mission in your own words, and what do you see as its most urgent priorities right now?
At its core, I think ALD Connect exists to serve its community. Right now, the priority is enabling research. At the same time, there are parts of our role that remain constant: creating engagement and connection, inspiring hope through real progress, and organizing people, meetings, and efforts so that work actually moves forward. Our annual meeting is a great example: there’s a real “family reunion” feel to it, but it’s also where serious conversations happen and where the community gets stronger.
How do you view ALD Connect’s role in research and partnerships with industry?
On the research side, I see ALD Connect as a conduit—an organization that helps channel energy and resources into high-quality projects, which move the field forward. That means creating a thoughtful process for selecting and funding research, including a grants committee and a review model similar to the NIH approach, where proposals are discussed carefully, strengths and weaknesses are debated, and we make difficult choices about what receives funding. It can feel slow, but that’s also how meaningful progress is built over time. With industry, the goal is for companies to see ALD as an area that’s organized, coherent, scientifically engaged, and ready to partner. Companies often have to choose which diseases to prioritize, and we want ALD to be an easy choice because the community is active, the clinical and scientific networks are strong, and families and clinicians are informed and engaged in how trials and therapy development work.
ALD Connect serves a diverse community of patients, caregivers, clinicians, and researchers. How will you balance these perspectives and keep patients at the center?
I’ve always thought of this work as relationship-based. I grew up in rural Michigan and originally imagined being a small-town doctor, and even though my career ended up in a different place, ALD has become my “small town.” It’s a tight community even though people are spread across the world, and I know many of the families, the kids, the scientists, and the physicians personally. That sense of connection matters, and it comes down to trust. Trust is really the connective tissue that holds people and communities together, and it’s not something you can take for granted. Maintaining it means being honest, transparent, earnest, and sincere—sharing the easy information and the hard information and being clear about what we know, what we don’t know, and what we’re worried about. If we keep those values at the center, it becomes much easier to keep patients and families at the center, too.
What is one thing you want every family in this community to know about ALD Connect, and how can they best engage with the organization right now?
I’d want families to know that ALD Connect is here to be useful, and that we created this kind of organization because we can do more together than any of us can do alone. Whether it’s supporting therapy development, strengthening the patient voice, helping move newborn screening forward, or simply connecting families so they don’t feel isolated, the purpose is to help channel the community’s energy into progress. One of the best ways to engage is to come to the Annual Meeting, because there really is no substitute for being together in person. Virtual platforms can help, but being in the same place with real people is different, and it matters. And if a family has an idea, a need, or is looking for a place to start, ALD Connect can be that convening space where you share what you want to see happen and find others to help move it forward, while also working alongside other ALD organizations that share the same goals.
What are you most excited about for 2026?
Honestly, the Annual Meeting. It’s one of my favorite events of the year. The mix of families, scientists, clinicians, and kids creates a really special energy. There’s an egalitarian, welcoming vibe to it, and it ends up being a social, intellectual, and emotional high point for me each year. In 2026, it will be hosted in Salt Lake City, and I hope more people can make it in person.
Is there anything else you would like people to know?
If anything, I’d just emphasize that the community is strong, progress is real, and the way we keep moving forward is by staying connected, keeping trust at the center, and continuing to support the science and collaboration that ultimately lead to better outcomes for families.