ALS Focus Patient and Caregiver Advisory Committee 

People living with ALS and caregivers are at the heart of ALS Focus. PCAC members lend their expertise and experiences with ALS to offer insights and advice on:  

• Potential survey topics 
• Survey question development, relevance and clarity 
• Usability of programmed surveys 
• Reports of results and other publications 

The committee meets and provides feedback as needed throughout the year. Travel is not required to participate. We are always looking for new PCAC members. If you would like to volunteer, please reach out to us at ALSFocus@als.org. 

PCAC Members 

Dawn Baxter 

After Dawn received her diagnosis in January 2023 (sporadic limb onset), she dove into reading everything she could about ALS. Having served as an executive assistant to CEOs for more than 30 years, she was not one to sit by and watch the disease take away everything she enjoyed, and certainly not without doing something to help those who would come after her. 

Dawn began by joining every support group she could find. She also worked with her local ALS clinic (Barrow Neurologic Institute) to enroll in a number of trials and research opportunities, and she was selected as a NEALS 2023 Research Ambassador. 

In the past, Dawn was an advocate for the underserved. She was formerly a board member of the local Muscular Dystrophy Association, raising funds to send kids to camp; volunteered extensively at summer and winter events for Special Olympics; and donated time, money and resources to the Justa Center, which provides resources, services and support to assist homeless seniors on their path back to housing. She hopes to use these resources and skills in raising awareness, support and funds for those living with ALS. But mostly, Dawn is grateful for the love and support from her son Derek, her daughter-in-law Karey, and the entire ALS community. 

Doug Clough 

On April 8, 2014, Doug was told that he had ALS. He immediately began wondering how he could get into a clinical trial and started looking for solutions. His wife Karen was very supportive and pushed him to do anything he could to help fight ALS and help the ALS community. In the time since his diagnosis, Doug has learned that he wouldn't trade those years for anything and looks forward to the years he has left. He prays he is able to help others and watch his grandkids graduate. He also serves as a member of the International Alliance of ALS/MND Associations. Doug serves as co-chair of the PCAC and as a member of the International Alliance of ALS/MND Associations.

Larry Falivena 

After being diagnosed with ALS in 2017, Larry knew he wanted to raise awareness of the disease as well as funds to support ALS research. He was featured on local and national news during the summer of 2019 as he, his wife and their two sons traveled across the country to meet with other people affected by ALS and shared their stories on social media—all while visiting every Major League Baseball park, called the “Iron Horse Tour” in reference to Lou Gehrig, Larry works with the ALS Association to raise awareness of ALS and money to help find a cure. He remains dedicated to making ALS a livable disease by serving as a member of the Association’s Board of Trustees and continuing to educate and fundraise to support patient care, advocacy and research. 

Ron Faretra 

Ron, who was diagnosed with ALS in January 2017, serves as the co-chair of the PCAC. He is a retired chief master sergeant from the United States Air Force. During his 27-year tenure in the Air Force, he spent 20 years as an aircraft loadmaster, logging more than 8,000 flying hours. He was responsible for the weight and balance, loading, unloading, cargo and personnel airdrop, and in-flight passenger care on the C-130 and C-141. 

For the last 6 years of his military career, Ron was the defense finance and accounting officer for Charleston Air Force Base, responsible for all payments for goods and services and civilian payroll. After retiring from the Air Force, he became the finance director for the City of Goose Creek located just north of Charleston, SC. Ron’s wife Bernadette, his two children—Jeffrey and Kristen, and his stepson Bradley have all been very supportive throughout his disease journey. They all understand fully the impact it will have on their lives. 

Natalie Fernandez 

Natalie has been an ALS advocate since her mother, Martha, passed away from bulbar-onset ALS in 2012. Natalie, her father Larry, and her sister Andrea run the Martha Olson-Fernandez Foundation (MOFF) in Martha's memory. Since Martha’s passing, MOFF has donated more than $400,000 to ALS patient care and research projects. Natalie currently facilitates the ALS Research Paper Review with fellow PCAC members Phil Green and John Russo. Over the years, Natalie has recognized that the oncology field has informed many important advances within the ALS community. She is project manager and head of patient advocacy at a precision oncology company called Viracta Therapeutics in San Diego, CA. 

Tyler Gaetano  

Tyler lives in Hoboken, NJ with his girlfriend and graduated from Wake Forest in 2015 with a bachelor’s degree in business and enterprise management. He had the honor of caring for his mother, Vera, a Navy veteran and VA researcher, during her battle with bulbar ALS. Vera was diagnosed in March 2020 and passed away in July 2021. During that time, Tyler quickly gained expertise in home health care by serving as his mother’s primary caregiver and medical liaison, led a massive renovation to improve accessibility at their new home, and optimized VA care and benefits for Vera. In summary, he ran through any roadblocks in his family’s way.  

Tyler now heads new business for a full service, independent sports and entertainment marketing agency. He also utilizes his knowledge of VA care and intimate understanding of the various intervals on the patient/caregiver roadmap to support the ALS community and make the path for those who come after his mother easier. 

Gary Goad 

Gary is a retired pharmacist and during his nearly 19-year career, he worked in multiple practice settings. He concluded his career as a clinical staff pharmacist in the home IV infusion industry. Although he no longer practices, Gary keeps abreast of knowledge and advancements surrounding the safe and evidence-based use of medications. 

Gary was diagnosed with ALS in November 2022, following almost 4 years of slowly deteriorating mobility and speech. He feels that, despite these mobility and speech deficits, he can move mountains, and his voice has never been louder. Gary hopes that through his roles as a NEALS clinical research ambassador and a member of the ALS Focus Patient Caregiver Advisory Committee, he can become an effective and valuable resource for a diverse patient population, particularly those who are medically underserved.  

Gary grew up in wild and wonderful southern West Virginia and currently resides in Charleston, WV. He enjoys spending time with his children, twin brother, family and friends. Gary also likes to travel, especially to the northeastern United States and you can often catch him at a baseball game or concert, as he is an avid fan of both. 

Lamont and Chanel Hobbs  

High school sweethearts Lamont and Chanel have been married 29 years. They are the proud parents of two adult daughters, Angel and Deja. As their lives were flourishing, raising their young children, the unimaginable occurred. After a year of testing, Chanel, at the age of 39, was diagnosed with ALS in June 2008. Chanel’s symptoms began with tripping, drop foot and unexplained falls. Fast-forward to today, and ALS has taken the full ride. Chanel is completely paralyzed, trached, vented and depends on a communication device to speak. Nevertheless, Chanel and Lamont haven't let their losses steal their joy.  

Chanel still works full-time as a deputy comptroller for the Virginia State Corporation Commission. She’s steadfast, relentless and determined. Chanel has a bachelor’s in accounting from Hampton University and an M.B.A. from Virginia Commonwealth University. Lamont is not only a devoted husband, father and Chanel’s caregiver, but he’s also a pastor and real estate broker. He has a bachelor’s in business management from Saint Paul’s College, an M.B.A. from Old Dominion University and a master’s in theology from Virginia Union University. 

Lamont and Chanel live a full life. They are advocates for ALS, raising more than $375,000 for the ALS Association. They also help raise ALS awareness within their community. They’ve been featured in television segments and newspaper articles. Chanel received the Virginia Governors Award for her ALS advocacy, resilience and dedication.

This couple believes that it’s not what happens to you in life, it’s how you respond. Their response has demonstrated positivity, faith and service. Even with the vent, they continue to travel and enjoy life. As Chanel says: “As long as I’m here, I’m not going to just survive; I’m going to thrive.“  

Steve Kowalski

Steve lives in Boston with his three adult children. He has a bachelor’s degree in business administration with a minor in marketing and an associate degree in computer science from Keene State College. After graduating in 1986, he moved to Boston and began working as a manufacturer sales representative for Apple Inc. via UNICOM. In 1996, Apple hired Steve directly to continue serving the New England education market. After 34 years, Steve left Apple on long-term disability and fully retired in November 2020.  

Steve experienced a loss of movement in his toes on his right foot in early 2016. Within 2 hours of seeing a neurologist in August 2017, he was diagnosed with ALS. Soon after, the City of Boston proclaimed September 5 Pete Frates Day. Hearing Pete’s wife and mother speak about courage and resilience was a turning point for Steve. The shock he felt from his recent diagnosis shifted to determination, and ever since, he has been using his strength to make a difference in the ALS community.  

Steve has raised more than $150,000 for ALS research and care. He is a NEALS Research Ambassador and Patient Fellow at the MND/ALS International Symposium. He has enrolled in clinical trials and is a member of the HEALEY ALS Platform Trial Expanded Access Program Patient Advisory Committee. He has been a patient speaker at pharmaceutical companies and academic medical programs, and he has consulted with technology companies about use of technology for mobility and communication. He currently serves as secretary of the ALS Association Massachusetts Community Leadership Council and chairs the advocacy committee. In 2019 and 2020, Steve attended the ALS Association Advocacy Conference in Washington, D.C., and he formed a group of people with ALS and ALS caregivers to lobby at the state level in Massachusetts.  

Carianne Meystrik

In 1994, Carianne graduated from the University of Tennessee, Knoxville with a degree in medical technology. Following graduation, she managed a specialty laboratory as part of the hemophilia clinic at the University of Tennessee Medical Center until taking on the role of full-time mom and homeschool teacher. She was diagnosed with limb-onset sporadic ALS in 1998 at the age of 28, and since then, she has participated in one clinical drug trial, about eight different research studies, become an ALS Research Ambassador, been an advocate for ALS awareness and policies in Washington, D.C., and raised more than $100,000 through the Walk to Defeat ALS. 

Katy Pierce

Katy grew up in Melrose, MA. After her dad, Bob, was diagnosed with ALS in December 2010, she became a part of his caregiving team until she moved to North Carolina to attend the University of North Carolina Chapel Hill in 2019. Up until Bob passed away in April 2023, Katy was involved in his health care and developed an interest in ALS research and care. Bob was stubborn and always fought for the care he knew he deserved. 

Katy graduated with a bachelor’s degree in neuroscience and psychology in 2023 and is currently doing stem cell-based autism research at the University of North Carolina Neuroscience Center. She hopes to enroll in a Ph.D. program in 2025 and eventually have a career in patient-focused and patient-informed ALS research, not only to honor her father’s life but to do her part to increase the quality of life for people still living with ALS. In the meantime, Katy is a NEALS ALS Research Ambassador and is involved with ALSUntangled, which reviews alternative ALS treatments so people living with ALS can make informed decisions about their health. 

Susan M. and Steven J. Reuter 

Susan has a bachelor’s degree in social work and a master’s degree in counseling. She was a guidance counselor at Wisconsin State Prisons and served on the Sherwood Area Jaycees and Sherwood Area Junior Chamber International (JCI). Susan married Steven Reuter in 1985, and their son Nick was born in 1991. She retired in 2014 after being diagnosed with ALS in 2013. 

Steven was born on a 100-acre homestead dairy farm in Harrison Township on the northern tip of Wisconsin’s Lake Winnebago where he still lives. After receiving his diesel mechanic degree from Fox Valley College, Steven worked as a mechanic for 15 years, then in customer service for a hardware store for another 15 years, and now operates S&S Engraving, a business that he started in 1985. Steven is a charter member of the Sherwood Area JCI (1975-1995) and now holds the organization’s highest international honor—JCI Senator. He is also a Sherwood Lions member, where he helps install wheelchair ramps for anyone who needs one at no charge. Steven was a caregiver to his father and is now a caregiver to Susan. 
 

 

John and Loretta Russo 

Since John’s diagnosis in 2013, he and his wife Loretta have been active advocates for people with ALS at both the federal and state level. John has also been a consumer reviewer for the Department of Defense’s ALS Research Program since 2015. Prior to his diagnosis, John worked in the dialysis industry for 29 years in various sales, consulting and business development roles. Loretta and John have been married since 1983. They enjoy hosting friends and relatives at their home in southern New Jersey.

 

Dave Shulman 

Diagnosed in 2023 with limb-onset ALS, Dave quickly plugged into the ALS community and uses his strategic and commercial expertise to push for faster, more efficient progress toward better outcomes for all families affected by ALS. Leveraging assistive technology, he continues to work full-time as a managing director at Wells Fargo in its Technology Finance Group – and wouldn’t have it any other way! Dave proudly attended the ALS Clinical Research Learning Institute® at the 2023 Annual NEALS Meeting, as well as the Patient Fellows Symposium Program at the 2023 International Symposium on ALS/MND. He serves on the Healey ALS Platform Trial Patient Advisory Committee, NIH’s Accelerating Medicines Partnership ALS Biomarkers Working Group and regularly collaborates with EverythingALS on citizen-based research. Dave lives in Summit, NJ with his adoring wife, two brilliant children and absolutely adorable puppy.

Michael and Wendy Wilson  

Michael was diagnosed with ALS in February 2017 at the age of 35. He graduated from Oklahoma State University as a mechanical engineer in 2007. He then worked for a local architectural and engineering firm doing mechanical engineering design for commercial buildings until July 2020 when he stopped working due to his condition. His wife Wendy is a registered dietitian but has stopped practicing to be Michael’s caregiver. They have a daughter named Londyn. 

Michael and Wendy try to be involved in the ALS community, especially by helping people who are newly diagnosed with ALS and showing them some of the solutions that have made life a little easier for them. Their family continues to be as active as they can by spending time with family and friends, going on road trips across the country and making the most of their situation.