Women’s History Month

The ALS Network celebrates the leadership and contributions of the many remarkable women who are making a difference in the fight against ALS. Join us in honoring many amazing women in the ALS community who are helping blaze trails in advancing the search for prevention strategies, effective treatments and cures, and who are leading the way in raising ALS awareness and support.

Meet Your ALS Network - Patricia Schimbor, Esq

Meet Patricia (Patty) Schimbor, Esq., a longtime ALS Network (formerly the ALS Association Golden West Chapter) leadership volunteer and current board chair. After her husband, Mark Anderson Schimbor, died from ALS in 2012, Patty joined the ALS Network and has advanced our mission by serving on our board of directors. She is an advocate for people with ALS and their loved ones, participates in our many community events, and gives back as a major donor.

Celebrating the many ALS Clinicians and Scientists Dedicated to Care, Cures, and Community

Celebrating the many ALS Clinicians and Scientists Dedicated to Care, Cures, and Community

As a part of National Doctors’ Day (March 30), we honor these special ALS clinicians and scientists dedicated to care, cures, and community. These individuals work tirelessly for people living with ALS and their families. They are also leaders, teachers, and mentors who are training the next generation of physicians and researchers.

Understanding the Mechanisms of ALS

Understanding the Mechanisms of ALS

Jill Ann Goslinga, MD MPH is an assistant professor in the UCSF Department of Neurology where she cares for people living with ALS and other neuromuscular diseases, teaches fellows and other trainees, and does both clinical trial and epidemiologic equity-focused research. She earned her Doctorate of Medicine at Harvard Medical School and completed her Neurology Residency and Neuromuscular/EMG Fellowship at UCSF. 

Dr. Goslinga’s research includes clinical trials for ALS, as well as population-based health equity research into the impact of air pollution on ALS disease progression, and strategies to reduce geographic health inequities in access to multidisciplinary ALS care. She is a recipient of the American Academy of Neurology’s Clinical Research Training Scholarship (CRTS) and the UCSF Dean’s Scholar Program in Population Health and Health Equity (PHHE).

In January 2024, Dr. Goslinga gave a special presentation about the mechanisms of ALS medications at the ALS Network’s (formerly the ALS Association Golden West Chapter) ASK ME educational webinar, “ALS Research and Care in 2024.” She provided an overview of the processes that cause cell injury, also known as ALS pathogenesis, and the connections to ALS medications including Tofersen (Qalsody), Edaravone (Radicava), Healey ALS Platform Regimens F and G, AMX0035 (Relyvrio), and Riluzole. Here are some excerpts.

Spotlight on … Erin Merritt – An Inspirational Theatremaker

Spotlight on … Erin Merritt – An Inspirational Theatremaker

Erin Meritt is well known in the San Francisco Bay Area theater community as the founder of the all-female Shakespeare company, Woman's Will, as well as her work with Stagebridge, Crowded Fire Theater, Bay Area Children’s Theatre, Magic Theatre, Theatre Bay Area, and the Bay Area Women’s Theatre Festival. In addition, Erin was part of a team that created a permanent exhibit for the Rosie the Riveter World War II Home Front National Historical Park where she wrote and directed audio stories based on local residents during WWII.

When Erin was diagnosed with ALS in August 2022, she refused to allow it to stop her from doing what she loved. Even though ALS took away her ability to speak, she directed her last production at the American Conservatory Theatre’s Strand Theater. After more than three decades, she remains an important leader in the theater community. Her efforts to build diversity, share stories of women and under-represented people, as well as create equity and gender parity in the arts, are remarkable, as is her inspirational fight against ALS.

Meet Your ALS Network - Karen Sutton

Meet Karen Sutton, ALS Network board member and person living with ALS. Diagnosed in January 2022, Karen has become an ALS advocate, spokesperson, and leadership volunteer who is helping advance the ALS Network’s critical work in care, research, and advocacy.

Before joining the board, she got involved in many of our community outreach events including our Walk(s) & Roll to Cure to ALS, the Napa Valley Ride, Walk & Roll to Cure ALS, and Lou Gehrig Day games with Major League Baseball. In October 2023, Karen was honored with the ALS Hero Award, and her brother Robert, accepted it on her behalf at the East Bay Walk.

Advancing ALS Research and Early-Career Scientists

Advancing ALS Research and Early-Career Scientists

The annual Barber ALS Research Award is one of the many legacies of Jim Barber, who was diagnosed with ALS in 2006 and battled the disease for nearly a decade. A major outcome of Jim's work was the formation of the California ALS Research Network in 2010 and the creation of the annual California ALS Research Summit in 2011.

Jim held a deep commitment to the mission of the ALS Network, then the ALS Association Golden West Chapter. He was passionate about advancing scientific achievement by fostering early-career researchers and developing new ideas. Sadly, he died from ALS in 2016.

Beginning with the 2017 Summit and continuing annually, the Barber family in conjunction with the Golden West Chapter present three (3) cash awards of $1,000 to each of the top poster presenters, along with a special memento recognizing their accomplishment. Since the award’s inception, 17 women have been honored with the Barber ALS Research Award for their outstanding efforts in ALS research. 

One of the 2024 winners is Caiwei Guo, PhD, from Stanford University, whose research is focused on how TDP-43 pathology triggers cryptic RNA splicing of synaptic genes in ALS/FTD.

Celebrating Students Dedicated to Ending ALS

The ALS Network is proud to celebrate Alison Conner and Naomi Johnson for their service as co-chairs for the 10th annual Jim Tracy 5K, Walk & Roll to Cure ALS. The San Francisco University High School seniors are leading a volunteer student committee, dedicated to the success of the annual fundraising event, in honor of Coach Jim Tracy who died from ALS in 2014. They each have brought their personal experiences to inspire their efforts to raise awareness and funds in support of the ALS community.

Alison Conner (2)

“As a runner, I wanted to honor Jim Tracy as he helped to create our incredible UHS track/cross country community. I also have a family member with ALS which inspired me to join this committee.” - Alison Conner

Naomi Johnson (2)

“Originally, I joined the JT5K Committee because a senior I looked up to told me to, but in being part of putting on this entire event and fundraising to support those facing ALS, I have found a part of my community that I admire and am proud to be a part of. This committee has helped me hone organizational and administrative skills for a good cause and has led me towards leadership in and out of my position as a committee sub-chair.” - Naomi Johnson

Honoring and Remembering Environmental, Social Justice, and ALS Advocate Marsha Maytum, FAIA, LEED AP

Honoring and Remembering Environmental, Social Justice, and ALS Advocate Marsha Maytum, FAIA, LEED AP

We celebrate the life and legacy of Marsha Maytum, FAIA, LEED AP, who died from ALS on February 10, 2024. As a co-founder of Leddy Maytum Stacy Architects, Marsha became an innovative architectural leader who held a deep conviction that architecture can and should address our most critical problems, including the climate crisis and social equity. After Marsha was diagnosed in 2020, she helped raise awareness and funds in support of the ALS community. She also shared her story with senators and members of the House of Representatives. Marsha and her family have participated in our many community outreach events. The ALS Network is forever grateful to Marsha for her determination to design spaces that nurture humanity, her perseverance to create change that is inclusive for all, and her passionate efforts to improve the lives of anyone impacted by ALS.

To learn more about Marsha’s impact, please read the following articles: 

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