The Alex and Jaci Hermstad Rare Disease Trailblazer Series - Her Stories: ALS

Join members of Her ALS Story, patient advocates, clinicians, and researchers to hear how a group of women are challenging ALS stereotypes and changing the face of this disease to drive female centric solutions.

Date: Tuesday, February 8, 2022
Location: Virtual
Time: 11 AM - 2 PM (EST)


image of Leah Stavenhagen member of Her ALS story

Sponsored By

Charles River Logo  ProjectALS Logo    IONIS Logo  Her ALS story.pngBiogen Logo.png

Amyotrophic lateral sclerosis (ALS) afflicts both genders, yet older men are the public face of this crippling neurodegenerative disorder. The reality is 45% of newly diagnosed patients are women, and while it is frequently diagnosed between 40 and 60 years old, it can strike at a very young age. Attendees of the virtual event will listen in on three intimate journeys from Her ALS Story members and women speaking for the advocacy, clinical, and research community who are driving change from diagnosis, to drug development to clinical trials.



All times in the agenda* are Eastern Standard Time (EST).

11:00 AM - 11:05 AM Opening Remarks
Julianna Margulies
11:05 AM -11:10 AM She Has Hope: Rebecca Luker Story
11:10 AM -11:50 AM Panel Discussion: Diagnosis and the Patient Journey
Kristina Bowyer, Jinsy Andrews, Leah Stavenhagen, Kaitlin Swanson, Sarah Durand
Moderator: Valerie Estess
11:50 AM - 12:00 PM Break
12:00 PM- 12:05 PM What Does Access Mean to You?
12:05 PM - 12:45 PM Panel Discussion: Accessing Clinical Trials for ALS
Lauren Black, Becky Crean, Sabrina Paganoni, Gwen Petersen, Erin Vierstra
Moderator: Barbara Killian
12:45 PM- 12:55 PM Break
12:55 PM - 1:00 PM For You: A Researcher's Story
1:00 PM - 1:45 PM Panel Discussion: Drug Development and a Look to the Future
Helen-Marie Dunmore, Emily Lowry, Alex Cavaliere, Michele Stellato, Sunny Brous
Moderator: Erin Fleming
1:45 PM - 1:55 PM The Alex and Jaci Hermstad Rare Disease Trailblazer Award   
Valerie Estess, Lori Hermstad, Her ALS Story
1:55 PM - 2:00 PM Closing Remarks    
Valerie Estess

*Agenda subject to change

Headshot of Julianna Margulies

Featured Speaker:
Julianna Margulies
Actor, Writer, Producer, Friend of Project ALS

Headshot of Alexandra Cavaliere

Alexandra Cavaliere
Patient Advocate, Her ALS Story

Headshot of Becky Crean

Becky Crean
Executive Director, Clinical Development, Ionis

Headshot of Emily Lowry

Emily Lowry
Director of Internal Operations,
Project ALS Therapeutics Core at Columbia University

Headshot of Erin Vierstra

Erin Vierstra
Patient Advocate, Her ALS Story

Headshot of Gwen Petersen

Gwen Petersen
Patient Advocate, Her ALS Story

Headshot of Helen-Marie Dunmore

Helen-Marie Dunmore
Principal Scientific Advisor

Headshot of Jinsy Andrews

Jinsy Andrews
Director of Neuromuscular Clinical Trials, Project ALS

Headshot of Kaitlin Swanson

Kaitlin Swanson
Patient Advocate, Her ALS Story

Headshot of Kristina Bowyer

Kristina Bowyer
Vice President, Patient Centric Drug Development, Ionis

Headshot of Lauren Black

Lauren Black
Distinguished Scientist, Charles River

Headshot of Leah Stavenhagen

Leah Stavenhagen
Patient Advocate, Her ALS Story

Headshot of Lori Hermstad

Lori Hermstad
Alex & Jaci’s Mom and Patient Advocate

Headshot of Michele Stellato

Michele Stellato
Patient Advocate, Her ALS Story

Headshot of Monique Green

Monique Green
Patient Advocate, Her ALS Story

Headshot of Sabrina Paganoni

Sabrina Paganoni, MD, PhD
Co-Director, MGH Neurological Clinical Research Institute (NCRI)

Headshot of Sarah Durand

Sarah Durand
Patient Advocate, Her ALS Story

Headshot of Sunny Brous

Sunny Brous
Patient Advocate, Her ALS Story

headshot of Barbara Killian

Barbara Killian
Associate Director, Discovery, Charles River

headshot of Erin Fleming

Erin Fleming
Research Consultant, Project ALS

headshot of Valerie Estess

Valerie Estess
Founder & Director of Research, Project ALS


At Charles River, we are passionate about our role in improving the quality of people’s lives. Our mission, our excellent science, and our strong sense of purpose guide us in all that we do. We approach each day with the knowledge that our work helps to improve the health and well-being of many across the globe.


Project ALS identifies and funds the most promising scientific and medical research that will lead to the first effective treatments and a cure for ALS. We recruit the world’s best scientists and doctors to work together—rationally and aggressively—to develop a better understanding of the ALS disease process and, in parallel, better therapeutic strategies.


For more than 30 years, Ionis has been the leader in RNA-targeted therapy, pioneering new markets and changing standards of care with its novel antisense technology. Ionis currently has three marketed medicines and a premier late-stage pipeline highlighted by industry-leading neurological and cardiometabolic franchises. Our scientific innovation began and continues with the knowledge that sick people depend on us, which fuels our vision of becoming one of the most successful biotechnology companies.

Her ALS story.png

We are a group of women diagnosed with ALS before our 35th birthdays. To challenge the stereotype that ALS is an older white man’s disease, we foster an open dialogue about our declining health in female-centric media outlets. We cultivate relationships with female lawmakers to improve current insurance and Medicare standards, and introduce legislation to speed up the drug pipeline. We raise money for the pursuit of unbiased, supercharged ALS research to ultimately end this devastating disease.

Biogen Logo.png

At Biogen, our mission is clear: we are pioneers in neuroscience. Since our founding in 1978 as one of the world’s first global biotechnology companies by Charles Weissmann, Heinz Schaller, Kenneth Murray and Nobel Prize winners Walter Gilbert and Phillip Sharp, Biogen has led innovative scientific research with the goal over the last decade to defeat devastating neurological diseases. Millions of people around the world are affected by multiple sclerosis, Alzheimer’s disease, Parkinson’s disease and amyotrophic lateral sclerosis (ALS). Many people also suffer from less common diseases such as spinal muscular atrophy (SMA) and progressive supranuclear palsy (PSP). We believe that no other disease area holds as much need or as much promise for medical breakthroughs as neuroscience.