North Star ALS

10/12/2026

North Star ALS was delighted to introduce Jessica Morris to Critical Path Institute (C-Path) to share her experience with SOD1 ALS. We believe people impacted by ALS should help shape research, from the questions we ask to how we measure progress.

Jessica makes meaningful outcomes tangible: climbing stairs, attending family events, maintaining independence. A change that looks small on a clinical scale can make a profound difference in daily life. These experiences should inform what we measure and how we interpret research results in ALS.

Her story also highlights the potential of targeted ALS therapies. Qalsody’s development offers an important foundation to learn from and build upon as researchers pursue treatments for more forms of ALS.

That progress should fuel ambition and rigorous science, with families helping define what success needs to look like.

Thank you, Jessica, for sharing your experience, Payne In The A.L.S. for your advocacy over the years, and C-Path for providing your important platform.

Jessica Morris, Care Advocate, joins C-Path's 2026 Global Impact Co...

09/25/2026

For people living with ALS and their families, clinical trial participation can also mean travel, long days, overnight stays, and significant physical and emotional demands.

In this episode of the North Star ALS Podcast, Nadia Sethi speaks with Corey Straub about an often-overlooked part of clinical research: the participant experience.

Corey created the Patient Experience Program at the Montreal Neurological Institute to support people participating in overnight and Phase I trials beyond the procedures required by the study. He shares what participants and families taught him, how seemingly small details can make a meaningful difference, and why a more humane research experience can also strengthen trust, communication, retention, and the research itself.

We also discuss INARC, the International Network for ALS Research and Care, and its work to connect and empower the allied health professionals and clinical research staff who play such an important role in ALS care and research.

What should “patient-centered research” look like in practice? Listen to the full conversation and let us know about your experiences and what you’d like to see for research participants.

YouTube: https://youtu.be/X_Qrqj-1IkY?si=Ci5pVIEbHqWLMldA

Spotify: https://open.spotify.com/episode/4wptLQkglcHfzFdHtGZZvI?si=3de162a59f2b434c

Apple Podcasts: https://podcasts.apple.com/us/podcast/perspectives-the-human-side-of-als-research/id6793122559?i=1000791169478

Podcast Episode · Perspectives: The Human Side of ALS Research · September 22 · 31m

09/24/2026

ALS families and clinicians have both identified the same gap: families want more conversations about research and clinicians need the information and tools to have those conversations.

Allison Bulat saw that need years ago and worked hard to make the Clinical Research Boot Camp happen to fill this gap, arranging the curriculum and bringing together the faculty and attendees to make research more accessible. Last weekend, it all came together. Much planning went into identifying geographies with fewer research opportunities and including clinics that serve those areas. These included clinics serving people in North and South Dakota, Arkansas, more rural parts of New York, and many other areas where research opportunities may be harder to access.

Over 48 hours, we learned together, engaged and collaborated within a group of 27 allied health professionals and advocates. We covered how the ALS clinical research landscape has changed over the years, the types of research available now, why observational studies matter and often have broader eligibility, trials currently recruiting, and the basics of genetics. We got to hear from ALL ALS and ALS United Arizona. Faculty included representatives from Massachusetts General Hospital, Northwestern /Les Turner ALS Clinic, the Veterans Administration, North Star ALS, and Global Y Care, and the event was hosted by ALS Network.

Some of the most valuable work happened when we practiced conversations through role playing. What do you say when a family asks about research? How do you bring it up when there are few or no trials nearby? We brought a strong mix of experience to those discussions, and over the weekend, we really got to know the people doing this work and help them build confidence and gather the tools to have these discussions.

The before and after assessments were encouraging. On a five-point scale, participants’ average self-reported confidence in answering a patient’s research question rose from 3.1 to 4.4, the largest increase among the measures we reviewed. Their sense of being equipped to connect families with research resources or pathways rose from 3.2 to 4.4.

Allison brought together people who care deeply about making research discussions a more useful part of ALS care. North Star ALS is grateful to have been part of it and looks forward to continuing to share resources and support with this group. This was an effort where people who have lived through the gaps in our systems and people who are in a position to help close them were in the same room, learning from one another and figuring out how to move forward together. Sometimes that is what it takes to move the needle.

09/23/2026

What happens in the years before ALS symptoms appear?

In a new episode of the CReATe Podcast, North Star ALS CEO Dr. Nadia Sethi talks with Dr. Michael Benatar about research following people who carry ALS-associated genetic variants. By studying blood samples collected over time, researchers found changes in certain proteins before ALS became clinically apparent.

They discuss what the findings could mean for future prevention trials, and why more research is needed before these measurements can predict an individual’s future.

Listen here: https://create.rarediseasesnetwork.org/resources/patients-families/create-podcasts

09/17/2026

If you are living with ALS or supporting a family member and exploring interventional clinical trials, our next Prism One Workshop will be held on September 22 at 9:00 a.m. PT / 12:00 p.m. ET.

Step 1: Register at https://northstarals.app.neoncrm.com/forms/prismonewebinar
Step 2: Watch the presentation in advance: https://youtu.be/tQPWvxAhdrQ
Step 3: Attend the live workshop on September 22 and bring your questions.

We’re trying something new to make Prism easier to access and more useful for the people it was created to support.

This workshop is for people living with ALS and family members or caregivers who are actively exploring interventional trials and are new to ALS research participation.

Please know that no prior knowledge or advocacy experience is needed. We’re here for you!

Navigating Early Research Decisions Aimed at those newly diagnosed or in the first stages of ALS, this session explains how clinical trials work, how to find one that fits your needs, and how to contact research sites. September 22, 2026 9:00am - 10:00am PST Presented by: Dr. Nadia Sethi, DDS, MS No...

09/15/2026

Ask. Listen. Look deeper.

Illuminate: Precision Medicine was built on the belief that understanding ALS research requires more than one kind of expertise, one familiar conversation, or one perspective.

Over the past several months, people living with ALS and their families joined researchers, clinicians, advocates, and industry leaders to explore where targeted drug development stands today, where it may be heading, and what questions still need to be asked.

We are deeply grateful to every presenter who shared their knowledge with honesty, welcomed difficult questions, and helped make complex science more understandable. Thank you to our sponsors and partner organizations for believing in this work and helping us bring it to the ALS community.

Also, enormous gratitude to our Illuminate Community Advisory Board for helping ensure that this program remained grounded in the questions, needs, and lived realities of ALS families.

We know Illuminate covered a tremendous amount of dense information. The series may be complete, but our work with this material is not. Over the next several months, we will continue breaking down key concepts, revisiting important questions, and helping connect what we learned to the research decisions and conversations happening across ALS.

The full webinars and related podcasts can be found on our YouTube channel, and all of our educational social media content will remain available to revisit and share.

Thank you for learning with us, questioning with us, and helping build a more informed and effective ALS research community.

ALS Network | Les Turner ALS Foundation | Target ALS | Genetic ALS & FTD: End the Legacy | Payne In The A.L.S.

09/14/2026

Randomization assigns clinical trial participants to groups by chance, but especially in smaller trials, chance does not always produce groups with similar expected rates of ALS progression.

Baseline neurofilament light, or NfL, may help. Higher baseline NfL is generally associated with faster future decline. Researchers can measure NfL before randomization and account for it when assigning participants, helping each group begin with a similar mix of expected progression rates.

Baseline NfL can also be included in the trial’s planned analysis. This may reduce unexplained variation, improve precision, and make a true treatment effect easier to detect. In some trial designs, it could also reduce the number of participants needed.

NfL can provide useful prognostic information for individuals, but it does not determine exactly how one person’s ALS will progress or whether that person will respond to a treatment. It is one part of the larger clinical picture.

A more balanced starting line can help researchers make a clearer comparison.

ALS Network | Les Turner ALS Foundation | Target ALS | Genetic ALS & FTD: End the Legacy | Payne In The A.L.S.

09/13/2026

Observational research is not one type of study. It includes natural history studies that show how ALS changes over time, biomarker studies that search for measurable signs of disease, and studies that collect samples, health information, surveys, or data from apps and wearable devices.

Unlike a treatment trial, these studies do not assign an experimental therapy. Many have broader eligibility and may include people living with ALS at different stages, gene carriers, and family members.

Participation can still ask a great deal of people living with ALS and their families. But without it, researchers have less information about how ALS occurs and differs among people, and the research needed to develop and test better treatments advances more slowly.

These contributions can reveal patterns that shape what scientists study, how trials are designed, and how treatment effects are measured. Observational research helps make everything that follows more targeted, efficient, and informative.

Studies are taking place around the world. Find a study near you and ask what participation involves. Your contribution can help build the foundation for better ALS research.

ALS Network | Les Turner ALS Foundation | Target ALS | Genetic ALS & FTD: End the Legacy | Payne In The A.L.S.

09/12/2026

Every blood sample, spinal fluid collection, clinic visit, and assessment can help researchers see ALS more clearly.

Laura Dugom, Associate Director of Clinical Research at Target ALS, explains how longitudinal natural history studies connect biological changes with changes in symptoms over time. This is one of the most scientifically meaningful ways to contribute to research.

Through their participation, people living with ALS and their families help researchers understand the disease more clearly, creating a stronger foundation for studies that are more targeted, efficient, and informative.

Watch the full Illuminate conversation: https://youtu.be/ZdXGDyK5q8Q?si=Hgw18dO5Cr1R36nh

ALS Network | Les Turner ALS Foundation | Target ALS | Genetic ALS & FTD: End the Legacy | Payne In The A.L.S.

09/12/2026

Most people with ALS or FTD do not have a known family history or an identified disease-causing genetic variant. That does not mean genetics has no role in their disease. Important genetic contributors may remain undiscovered or poorly understood.

One important consideration in discovering new genetic contributors is that large genetic datasets still disproportionately represent people of European ancestry. When other populations are underrepresented, researchers may miss genetic contributors, struggle to confirm findings, or find it challenging to determine whether a variant is common, rare, or related to disease.

Research led by Dr. Juliana Acosta Uribe and colleagues shows what broader representation can make possible. By building genetic datasets across historically underrepresented Latin American populations, researchers expanded opportunities for discovery and showed how findings may be interpreted differently across ancestry groups.

This matters to families with known genetic disease and to people whose ALS or FTD is currently considered sporadic. Representation is necessary for more complete genetic discovery.

ALS Network | Les Turner ALS Foundation | Target ALS | Genetic ALS & FTD: End the Legacy | Payne In The A.L.S.