Advancing Hope: FTD and ALS Joint Initiatives
Did you know that certain cellular changes that occur in FTD are also observed in Amyotrophic Lateral Sclerosis (ALS)? In some cases, neurodegeneration in ALS and FTD is linked to aggregation and impairment of a protein known as TDP-43. Furthermore, there are genetic mutations linked to onset of one or both diseases. With these and other biological changes bridging FTD and ALS, scientific advancements on these shared features can accelerate the field towards successful drug approvals for both diseases. AFTD recognizes the importance of harnessing learnings from related fields like ALS and continues to advocate for representation of the FTD community in applicable ALS studies.
Here are several ways that AFTD has recently been engaging with researchers and community members to accelerate the pace of collaboration between FTD & ALS:
- ALS experts have spoken at the FTD Research Roundtable annual meeting hosted by AFTD. Through their participation, FTD researchers have learned about the ALS approaches and tool development that could be applicable to FTD studies. The ALS community has recently had exciting new advances in drug development. Tofersen was recently approved as the first treatment of ALS caused by the SOD1 mutation and is being tested in the ATLAS trials as preventative intervention in presymptomatic ALS. Through this work and that of others, we learn about biomarker development and approaches for successful clinical trials in a rare neurodegenerative disease.
- A one-day C9orf72 FTD/ALS Prevention Trial Workshop was held in 2024, led by Dr. Adam Boxer (UCSF) and Dr. Michael Benatar (University of Miami) and enabled by AFTD and the ALS Association. The agenda focused on crucial components needed to deploy a C9orf72 FTD/ALS prevention trial and incorporated input from persons with lived experience of FTD & ALS. A manuscript highlighting the meeting has been recently submitted for publication.
- AFTD is partnering with other scientific stakeholders through the Accelerating Medicines Partnership (AMP) ALS Program. The goal of AMP ALS is to promote collaboration between industry, NIH, FDA, and nonprofit organizations to accelerate drug and biomarker development for ALS. AFTD’s participation in this program is made possible by David and Weezie Reese.
- AFTD staff have represented the FTD community at eight scientific conferences focused on ALS and FTD research over the last year. AFTD has provided sponsorship for a number of these meetings and invited people directly impacted by FTD to participate in these scientific conversations.
- Drs. Michael Benatar (University of Miami) and Corey McMillan (University of Pennsylvania) joined AFTD’s Senior Director of Scientific Initiatives, Dr. Penny Dacks, for a plenary session at the AFTD Education Conference titled FTD: At the Crossroads of Neurodegenerative Disease. The discussion included the biological and clinical overlap of FTD and ALS, why these diseases have traditionally been siloed, the important work being down to bridge these gaps, and how this collaborative work is relevant for everyone impacted by FTD.
- Learn more about FTD and ALS on AFTD’s website.
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