Neurodegeneration Conferences: In Search of a Self Cure
Over the past year, CureC9’s Yentli Soto Albrecht, PhD has attended conferences across the United States and Europe, sharing her story as a C9orf72 genetic carrier and MD–PhD trainee racing to find treatments for ALS and FTD. Below is a chronological account of each stop in her In Search of a Self Cure conference series.
Conference 1: Packard Symposium — Johns Hopkins, Baltimore (April 2025)
The Robert Packard Center for ALS Research at Johns Hopkins hosted Yentli for what would be her first major conference in the ALS/FTD field — attended just six months after losing her father to ALS. In a post shared from the symposium, she reflected on the weight of that timing: ALS had taken her father only 14 months after foot drop first appeared. At the Packard Symposium she connected with leading researchers including Claire Clelland, Rita Sattler, Sarah Mizielinska, and Nicholas Seyfried, as well as advocates from Genetic ALS & FTD: End the Legacy. A two-hour conversation with Dr. Clelland helped reframe Yentli’s thinking about pursuing full physician-scientist training — something she had been reconsidering given the urgency of cure-directed work.
Conference 2: AD/PD 2025 (April 2025)
Just days after the Packard Symposium, Yentli attended AD/PD 2025 — Advances in Science & Therapy — marking eight months since she held her father as he struggled to take his last breath. The conference brought together leading voices across Alzheimer’s, Parkinson’s, ALS, and FTD research. Yentli connected with Jeffrey Rothstein, Rita Sattler, Claire Clelland, representatives from the ALS Association, ALS TDI, Ionis Pharmaceuticals, Corsalex, the Association for Frontotemporal Degeneration (AFTD), Barrow Neurological Institute, and the ALS Network, among many others. The breadth of those connections signaled what this conference series would become: a sustained campaign to bring the patient-scientist perspective into the rooms where ALS and FTD science gets made.
Conference 3: C9 Summit — Arizona (April 2025)
The C9 Summit in Arizona brought together researchers, clinicians, and advocates focused specifically on C9orf72 — the genetic mutation at the heart of Yentli’s family’s story and her own research mission. After the Packard Symposium, Rita Sattler had expressed excitement about seeing Yentli at the Arizona summit, and the event delivered on that promise of community. The gathering deepened Yentli’s network within the C9-specific research world and reinforced the urgency of cure-directed work for those carrying the mutation.
Conference 4: New York Academy of Sciences — Therapeutic Approaches to Protein Misfolding in Neurodegenerative Disease, New York, NY (May 2025)
The New York Academy of Sciences hosted a focused symposium on therapeutic approaches to protein misfolding in neurodegenerative disease — a topic directly relevant to C9orf72 pathology. Yentli attended and made a lasting impression on researchers and biotech leaders in the room. James Moe, President & CEO of Oligomerix, described meeting her there as motivating for his entire team: learning about her personal stake in C9 ALS and FTD, and her father’s passing, reinforced for him why this research must continue. The encounter led to an ongoing conversation about potential future collaboration.
Conference 5: Target ALS Annual Meeting (May 2025)
Yentli attended the Target ALS Annual Meeting, where the organization’s mission — #EveryoneLives — aligns directly with CureC9’s. The meeting brings together the ALS research community to accelerate the path from discovery to treatment, and Yentli documented her experience in a video post. The gathering reinforced the collaborative spirit that has come to define her conference presence: as a patient-scientist who carries both urgency and scientific credibility into every room.
View the LinkedIn post (video) →
Conference 6: 2nd Annual Genetic ALS & FTD Community Summit (June 2025)
Yentli took on a leadership role at the 2nd Annual Genetic ALS & FTD Community Summit, moderated by Genetic ALS & FTD: End the Legacy — moderating a panel alongside her husband Sam Riegel, her mother Elizabeth Soto, and advocate Abigail Bunting. The panel brought together perspectives from researchers including David Irwin, Matt Harms, Frank Shewmaker, and Manish Raisinghani, with support from the ALS Hope Foundation and Target ALS. Executive Director Jean S. of End the Legacy captured the spirit of the event: “Teamwork makes the dream work.” Yentli’s response: “Thank YOU for your inspiring leadership.”
Conference 7: VIB New Horizons Meeting — Leuven, Belgium (October 2025)
By the time Yentli arrived in Leuven, Belgium for VIB’s New Horizons Meeting on neurodegeneration, she had attended six conferences in the year since her father’s death — all while keeping her identity as a C9orf72 carrier private. At VIB, she chose to step forward. In the post she shared afterward, she described what it meant to finally speak openly in that room. The meeting brought together world-leading researchers including Bart De Strooper, Ludo Van Den Bosch, Jeroen Pasterkamp, Renzo Mancuso, Selina Wray, Judith Steen, Stephan Zuchner, Steven Boeynaems, Robert Prior, and Ammar Al-Chalabi — a gathering of the field’s top minds, many of them working on pathways directly relevant to C9orf72. For Yentli, it was a turning point: her public identity as a patient-scientist in the ALS/FTD world was no longer something she navigated privately.
229th Interurban Clinical Club Meeting (November 2025)
Penn Medicine Board of Trustees presentation (October 2025)
In November 2025, Yentli shared her mission to accelerate treatments for ALS and FTD with the Board of Trustees and leadership of Penn Medicine, University of Pennsylvania Health System — presenting at the historic Interurban Clinical Club Meeting #229. The Interurban Clinical Club, one of the oldest medical societies in the United States, convenes clinicians and scientists from leading academic medical centers. Connecting with Penn Medicine’s leadership, including Rahul Kohli and colleagues from the Perelman School of Medicine, reinforced the institutional support behind Yentli’s research and advocacy — from protein mapping at a European lab to building the first biorepository of stem cells carrying the C9orf72 mutation.
Conference 8: 36th International Symposium on ALS/MND — San Diego, CA (December 2025)
The International Symposium on ALS/MND is the field’s largest annual global gathering, and the 36th edition in San Diego marked a milestone for Yentli: her 10th conference since losing her father, exactly one year after her first. In a post tagged #SearchForASelfCure, she reflected on the arc of that year — from a grieving daughter walking into the Packard Symposium for the first time, to a recognized patient-scientist with a growing network across four continents. The San Diego symposium brought together researchers including Christine Vande Velde, Jeffrey Rothstein, Alex Cammack, Anjan Aralihalli, Christopher Donnelly, Jack Humphrey, Jeroen Pasterkamp, Monica Gorassini, David Hopkins, Sheri Strahl, and Defne Amado.
Conference 9: Gordon Research Conference — Inaugural FTD Gordon Conference, Ventura, CA (February 2026, pending)
The inaugural FTD Gordon Research Conference in Ventura, California represents a landmark moment for frontotemporal dementia research — the first Gordon Conference dedicated specifically to FTD. Yentli’s attendance is pending. We will update this post when more details are available.
Conference 10: Packard Symposium — Johns Hopkins, Baltimore (March 2026)
One year after her first conference, Yentli returned to the Robert Packard Center for ALS Research at Johns Hopkins — this time as a returning presence, not a newcomer. In the post she shared, she noted that the Packard Symposium had been her first conference in this field a year ago, and that returning marked her 10th. The symposium connected her again with Jeffrey Rothstein and Packard Center colleagues, as well as researchers including Christine Vande Velde, Alex Cammack, Anjan Aralihalli, Christopher Donnelly, Jack Humphrey, Jeroen Pasterkamp, Monica Gorassini, David Hopkins, Sheri Strahl, and Defne Amado. The year of conference attendance — funded in part through her role as inaugural Community Science Liaison with Genetic ALS & FTD: End the Legacy — had transformed her standing in the field.
Conference 11: AD/PD 2026 — Baltimore (March 2026)
Penn Medicine, University of Pennsylvania Health System featured Yentli’s attendance at AD/PD 2026 in a profile that captures the stakes of her work: an MD–PhD in training, a genetic carrier 95% likely to develop ALS and FTD in the coming decades, and a patient advocate working to change her own future and the lives of others. With support from Penn, she is advancing powerful collaborations — from mapping proteins at a European lab facility to creating the first biorepository of stem cells carrying her genetic mutation. For Yentli, conferences like AD/PD are more than a step in her training. They are where Penn’s institutional support meets her personal determination to turn a devastating diagnosis into science that could change what survival looks like.