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PROJECT ALS RESEARCH LIVE

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4/24/2023

Project ALS Research Live: 25 Years of Research Progress - Our First Family

Mickey McGrath was a beloved husband, father, and doctor. Following his ALS diagnosis, Mickey and his family rallied their community in support of Project ALS research. Erin and Valerie speak with Mickey’s daughters, Nicole and Melissa, about their father’s life with ALS and how their community has continued to champion Project ALS in honor of their dad for more than 20 years.

3/28/2023

Project ALS Research Live: 25 Years of Research Progress - Sea of Plenty

Erin and Valerie are joined by pre-eminent ALS geneticist and a founding Project ALS Research Advisory Board member, Robert H. Brown Jr., DPhil, MD, to talk about when Project ALS met Dr. Brown, and his wise words that encouraged Project ALS cofounders to relentlessly work towards better treatments for ALS.

2/23/2023

Project ALS Research Live: 25 Years of Research Progress - The Learning Curve

Erin and Valerie are joined by Alexandra Cavaliere and Gwen Petersen of Her ALS Story to discuss some difficult, but necessary, topics, including the road to an ALS diagnosis, participating in clinical trials, and what the future of ALS research looks like.

1/26/2023

Project ALS Research Live: 25 Years of Research Progress - The Beginning Years

Leading neurologist and neuroscientist, Dr. Jeffrey Rothstein, diagnosed Project ALS founder Jenifer Estess at the age of 35. He then became a founding crusader for collaborative Project ALS research. Dr. Jeffrey Rothstein and Project ALS president Meredith Estess join Valerie Estess and Erin Fleming for an intimate discussion about the beginning years of Project ALS, why it was created, and what we’re doing now.

12/15/2022

Project ALS Research Live: The Next Generation

Valerie and Erin are joined by Lauren Hendel, Brynley Kirchhoff, and Kylan Morris, three young women who lost a parent to ALS. They share their experiences growing up with a parent living with ALS, the isolation of grief, the power of action, and why Project ALS continues to give them hope.

10/20/2022

Project ALS Research Live: A Family Effort

Valerie was joined by Kathy and Richard, members of the Weber family (NextGen ALS)—which has been afflicted by a genetic form of ALS (CHCHD10) for generations—and Drs. Giovanni Manfredi and Hibiki Kawamata Fujita from Weill Cornell Medicine to talk about our effort to develop therapies for genetic ALS and what this could mean for all forms of the disease.

9/20/2022

Project ALS Research Live: An Update On Prosetin

Erin and Valerie are back to give an update on prosetin—the first potential new drug under investigation for the treatment of ALS to emerge from the Project ALS Therapeutics Core at Columbia—that Project ALS moved to Phase I of FDA clinical trials earlier this year. They are joined by Dr. Hynek Wichterle, scientific co-director of the Core, and Stan Abel, president and CEO of ProJenX.

11/02/2021

Project ALS Research Live: ALS Drug Candidates, from Jaci Hermstad to Phase III Clinical Trial

Erin and Valerie are joined by special guests Dr. Becky Crean—Executive Director, Clinical Development at Ionis Pharmaceuticals—and Lori Hermstad—mother and ALS advocate—for a conversation on the power of advocacy and community in the drug development process.

9/14/2021

Project ALS Research Live: An Update from The Core

Erin and Valerie welcome back Emily Lowry, PhD, Director of Internal Operations at the Project ALS Therapeutics Core at Columbia (THE CORE) for up-to-the-minute developments from THE CORE, and to answer your questions about how we utilize units of THE CORE to get better drugs to clinical trial for people with ALS.

8/18/2021

Project ALS Research Live: Next Steps for Prosetin

Erin and Valerie are joined by ALS clinical and clinical trial specialist, Jinsy Andrews, MD, MSc, & regulatory consultant, Kevin Phelan, PhD, to discuss prosetin moving to Phase I clinical trial.

6/1/2021

Project ALS Research Live: Featuring Gwen Petersen, Leah Stavenhagen, Michele Stellato & Sally Stewart

Erin and Valerie are joined by four powerhouse advocates living with ALS for a discussion about what it means to have ALS as a young woman in 2021.

4/13/2021

Webinar: The History and Future of "ALS in a Dish" featuring Sebastian Thams, MD, PhD

Erin and Valerie are joined by Sebastian Thams, MD, PhD, a Project ALS/Jenifer Estess Laboratory for Stem Cell Research alumnus, for a deep dive into the development of the first patient-derived models of ALS, how he leveraged this breakthrough toward a sophisticated drug screening platform—and the ALS drug candidates we’ve discovered based on his work.

3/23/2021

Webinar: A Good Virus? New Tools in ALS Research featuring Francesco Lotti, PhD

Erin and Valerie are joined by Francesco Lotti, PhD—who directs the Viral Vector Unit at The Project ALS Therapeutics Core at Columbia—to talk all things viral vectors, how they can be used in ALS therapy development, and an update on his work at THE CORE.

3/9/2021

Webinar: The Kleiner Family Initiative

Erin and Valerie connect with Meredith Gonnason, who, along with her family, friends, and community, have raised over $1.5M for Project ALS following her mother Carol’s diagnosis in 2013.

2/10/2021

Webinar with Esteban Mazzoni, PhD

Erin and Valerie speak with Esteban Mazzoni, PhD, about how his work has contributed to better cellular models of ALS and new approaches to understanding and treating the disease.

1/26/2021

Webinar with Neil Shneider, MD, PhD

Erin and Valerie speak with Neil Shneider, MD, PhD, about new efforts to diagnose and treat ALS through the Project ALS Families Project, the CORE, & other targeted research efforts.

1/12/2021

Webinar with Meredith Estess

Erin and Valerie welcome back Project ALS co-founder & president, Meredith Estess, to look back at what we have learnt from past Project ALS research – and talk about the research forecast for 2021!

12/15/2020

Webinar with Emily Lowry, PhD

Erin and Valerie are joined by Emily Lowry, PhD, for a year-end update on The Project ALS Therapeutics Core at Columbia’s accomplishments, how the team have continued to progress research during this unprecedented time, and where we are heading in 2021!

12/1/2020

Webinar with Staci Kirchhoff and Christine Taylor

Erin and Valerie are joined by Project ALS Board members and long-time supporters Staci Kirchhoff and Christine Taylor to discuss what drew them to Project ALS, and how they found their people.

11/17/2020

Webinar with Alejandro Garcia Diaz, MA, and Bethany Johnson-Kerner, MD, PhD

Erin and Valerie catch up with Alejandro Garcia Diaz, MA and Bethany Johnson-Kerner, MD, PhD, two alumni of the Jenifer Estess/Project ALS Laboratory for Stem Cell Research.

11/4/2020

Webinar with Brent Stockwell, PhD

Erin and Valerie speak with Brent Stockwell, PhD, whose laboratory was integral in designing and synthesizing prosetin, the first investigational drug to emerge from The Project ALS Therapeutics Core at Columbia as a potential treatment for ALS.

10/20/2020

Webinar with Richard Kind

Erin and Valerie chat with actor and long-time Project ALS supporter, Richard Kind. Richard is the host of this year’s Tomorrow is Tonight Virtual Gala, airing Thursday, October 22nd at 7:30 ET.

10/6/2020

webinar with Senator Mike Braun and Corey Polen

Erin and Valerie speak with Senator Mike Braun, co-chair of the Senate ALS Caucus, and ALS patient advocate Corey Polen about the Promising Pathway Act (S. 3872) and other critical ALS legislative priorities.

9/22/2020

Webinar with Michele Stellato

Erin and Valerie speak with Michele Stellato about her diagnosis, the strength of her community, and how she plans on being the best thing to ever happen to ALS.

9/8/2020

Webinar with George Mentis, PhD

Erin and Valerie chat with George Mentis, PhD about how he is now using his knowledge of neural degeneration and motor systems to lead the In Vivo Electrophysiology Unit of The Project ALS Therapeutics Core at Columbia (THE CORE) where where he applies cutting edge technology to better characterize motor neuron dysfunction—and response to potential therapies—in ALS.

8/25/2020

webinar with Cali Orsulak and Nadia Sethi

Erin and Valerie speak with Nadia Sethi and Cali Orsulak who aided the I AM ALS Promising Therapies Committee in debuting ALS Signal: a tool designed to empower those living with ALS with information about clinical ALS research on a global scale.

8/13/2020

Webinar with Emily Lowry, PhD

Erin and Valerie speak with Emily Lowry, PhD, about where we are with the prosetin program, and provide an update on other research progressing through The Project ALS Therapeutics Core at Columbia (THE CORE) – despite the impact of COVID-19.

7/28/2020

Webinar with Matthew Harms, MD, PhD

Erin and Valerie speak with Matthew Harms, MD, PhD, about ALS genetics and how his expertise is critical to The Project ALS Therapeutics Core at Columbia (THE CORE)’s efforts to develop novel precision medicines for ALS.

7/21/2020

webinar with Alejandro Chavez, MD, PhD

Erin and Valerie speak with Alejandro (Alex) Chavez, MD, PhD about the unique system he and his lab are developing in which drugs can be tested against multiple genetic mutations causing ALS, and even other neurodegenerative diseases like Alzheimer’s and Parkinson’s, in one screen.

7/14/2020

Webinar with Judy Gold

Erin and Valerie speak with Emmy Award winning writer and comedian, Judy Gold, about her support of Project ALS and how she has raised awareness and critical funding for leading edge medical research as an ambassador for the organization.

6/30/2020

Webinar with Erin Fleming

Valerie introduces co-host Erin Fleming to discuss Erin’s role as Director of External Operations at The Project ALS Therapeutics Core at Columbia (THE CORE) where she oversees the day-to-day operations of prosetin’s development.

6/23/2020

Webinar with Hynek Wichterle, PhD

Erin and Valerie speak with Hynek Wichterle, PhD, Associate Professor at Columbia University, and co-scientific director of The Project ALS Therapeutics Core at Columbia (THE CORE). Dr. Wichterle discusses developing the ALS in a Dish cellular drug screening model that his lab used to discover prosetin, and how we continue to push ALS drug development forward through THE CORE.

6/16/2020

Webinar with Joe Quinn, MS

Erin and Valerie speak to Joe Quinn, MS, the expert guiding Chemistry, Manufacturing, and Controls (CMC) for prosetin. Joe explains what CMC actually means, how drug manufacturing and formulation evolves with clinical development, and how we’re approaching this process with prosetin.

6/9/2020

Webinar with Meredith Estess

Erin and Valerie are joined by Project ALS President, Meredith Estess. In 1998, Meredith cofounded Project ALS to set forth a new paradigm for ALS research. Meredith speaks about how Project ALS transformed the ALS landscape, and the decision and plans to bring prosetin to people with ALS.

6/2/2020

Webinar with Arie Zask, PhD

Erin and Valerie speak with Arie Zask, PhD about his experience as a medicinal chemist and his role in the discovery and development of prosetin.

5/26/2020

Webinar with Sandy Morris

Sandy Morris was diagnosed with ALS in January 2018. Sandy joins Erin and Valerie to discuss her work as an ALS expert & advocate with I AM ALS—from specific efforts to improve ALS drug development, to big goals toward making ALS a priority on this planet.

5/19/2020

Webinar with Eric and Amanda Stevens

Erin and Valerie speak with Amanda and Eric Stevens about their journey to becoming leading activists to #axeALS and how they formed Team Stevens Nation to battle the toughest fight of their lives—against ALS, and against time.

5/5/2020

webinar with Lauren Black, PhD

Erin and Valerie speak with Lauren Black, PhD about IND enabling studies, what this means for prosetin, and important considerations when approaching drug development for life-altering diseases such as ALS.

4/28/2020

Webinar with Jinsy Andrews, MD, MSc

Erin and Valerie speak with Jinsy Andrews, MD, MSc, Director of Neuromuscular Clinical Trials at Columbia University, about impactful clinical trial design and prosetin’s development.

4/21/2020

webinar with Emily Lowry, PhD

Erin and Valerie are joined by Emily Lowry, PhD, Director of Internal Operations for The Project ALS Therapeutics Core at Columbia (THE CORE), and one of the lead scientists on the prosetin pre-clinical development team. Dr. Lowry describes how THE CORE is improving our ability to identify and evaluate promising ALS therapies, and details the drug screening process and challenges overcome in developing prosetin.

4/14/2020

webinar with Kevin Phelan, PhD

Erin and Valerie are joined by Kevin Phelan, PhD, regulatory consultant for our prosetin team. Dr. Phelan discusses how his breadth of regulatory experience, which ranges from a 20+ year career at Pfizer to hands-on work with start-up biotechs, is helping us to think outside the box and accelerate prosetin’s development.