ALS Focus Patient and Caregiver Advisory Committee
People with ALS and caregivers are at the center of ALS Focus. Members of the ALS Focus Patient and Caregiver Advisory Committee (PCAC) are leaders in the ALS community and represent the voices of people living with ALS and caregivers. The PCAC provides valuable feedback and advice to the ALS Focus Steering Committee and Association leadership. PCAC members lend their expertise and experiences with ALS to offer insights on the following:
- Potential survey topics
- Survey question development, relevance, and clarity
- Usability of programmed surveys
- Review of ALS Focus reports and publications
The Chair of the PCAC is Ron Faretra, who also serves on the ALS Focus Steering Committee. The committee meets and provides feedback as needed throughout the year, either in person or virtually. Travel is not required to participate.
We are always looking for volunteers to serve on our ALS Focus Patient and Caregiver Advisory Committee. If you would like to join the PCAC, please send a message to [email protected].
Patient and Caregiver Advisory Committee Biographies
Member of the International Alliance of ALS/MND Associations
ArizonaApril 8, 2014 Doug Clough was told that he has ALS, Lou Gehrig’s Disease while at the game where Cal Ripken broke Lou Gehrig’s record. Doug immediately began wondering how he could get into a clinical trial and began 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 his five years post diagnosis Doug has learned that he wouldn't trade those years for anything and looks forward to the years he has left. He prays that he is able to help to others and watch his grandkids graduate.
ALS Association Board of Trustees Member
After his own ALS diagnosis in 2017, Larry knew that he wanted to raise awareness of this disease and help raise funds for ALS research. He was featured on local and national news during the summer of 2019 as he took his family around the country to meet with other people who have been affected by ALS and sharing their stories on social media - all while visiting every Major League baseball park.
Called the “Iron Horse Tour”, in reference to Lou Gehrig, Larry worked with The ALS Association National office and Chapters to create awareness about ALS and raise money to help find a cure. He remains dedicated to making an impact against ALS by continuing to raise awareness, and fundraising to help support patient care, advocacy, and research.
Larry grew up in Florida but currently lives in Apex, NC. He has been married for 19 years to his wife Shana and has two boys, Quinn, 15, and Piersen, 13.
Ron was 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 over 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.
The last six years 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.
He was diagnosed with ALS by Dr. Jeffrey Rothstein at Johns Hopkins Hospital January 2017. The diagnosis was confirmed and accepted by the Veterans Administration in June of 2017. Ron considers himself a very lucky ALS patient in that the disease is moving very slowly. It has affected his legs, right hand, and arm; however, he is able to walk short distances with a cane or walker and uses a mobility scooter for longer distances. He does water aerobics five days a week, which Ron believes has been a tremendous help in his ability to still walk.
He is married to his wife Bernadette, and his two children Jeffrey and Kristen and Bradley, his stepson, have all been very supportive of the disease. They understand fully the impact it will have on all their lives.
After Dawn received her diagnosis in January 2023 (sporadic limb onset), Dawn dove into everything she could read on ALS. With her previous experience as an EA to CEO’s for more than 30 years, she was not one to sit still and watch the disease take away everything she enjoyed . . . and certainly not without some way to help those that would come after her.
Dawn began by joining every single support group she could find; she worked with her local ALS Clinic (Barrow Neurologic Institute) on enrolling in trials and research of which she is currently involved in HEALY, ARC/Precision and TARGET and hopes to be part of a VR (virtual reality) for PALS thru the University of Texas in Austin; and she has recently been accepted as a NEALS 2023 Research Ambassador.
In her past, she was an advocate for the underserved... was formerly a board member of the local MDA Association raising funds to send kids to camp; volunteered extensively at the 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. Her hope is to take 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, and daughter-in-law Karey and the entire ALS community.
Natalie Fernandez 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, have been running the Martha Olson-Fernandez Foundation (MOFF) in Martha's memory. Since her passing, MOFF has donated over $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 presently working as the associate project manager of clinical development at a precision oncology company called Viracta Therapeutics in San Diego, CA.
Troy was born in Puerto Rico where he lived until his teenage years when he moved to Tampa Bay where he has lived, raised a family, and worked for the last 40 years. A graduate of the University of South Florida with a bachelor’s degree in accounting, Troy is a 56-year-old husband and father of four and a person living with ALS (limb onset), diagnosed in June 2018.
Troy worked at FIS, a global financial technology company, for 26 years and devoted the last 20 years to the payments industry in the Latin America region. During his time at FIS, Troy has had various roles including Director of Accounting, Project and Country Manager, Head of Client Relations, and more recently, Head of Pre-Sales and Marketing for Latin America and the Caribbean, where he has led efforts around market development and product and marketing strategy.
Troy is eager to dedicate his time to help advance awareness and provide support for ALS related causes. Troy joined the Board of Directors at the Florida Chapter in March 2019.
Tyler Gaetano lives in Hoboken, NJ with his girlfriend, and graduated from Wake Forest in 2015 with a Bachelor’s 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 at home in Connecticut. Over that time, Tyler quickly gained expertise on home healthcare, serving as his mother’s primary caregiver and medical liaison, led a massive handicap renovation at their new home, and optimized VA care and benefits for Vera. In summary, he ran through any roadblocks in his family’s way.
Prior to caring for his mother, Tyler worked in sports marketing, most recently heading client brand partnerships, hosting company events, and assisting in contract negotiations for NFL players at a boutique sports management agency. He is excited to utilize his knowledge of VA care and intimate understanding of the various intervals on the patient/caregiver roadmap, to further support the ALS community, and make the path for those who come behind his mother easier.
A loving husband to his wife Jennifer, Phil is also a dedicated father to four children (Arianne, Hunter, Parker, and Whitney). Four years after doing the Ice Bucket Challenge, Phil was diagnosed with ALS in August of 2018 and immediately dedicated himself to making a difference in the fight against this horrific disease. Phil is active in helping multiple ALS organizations and institutions (Team Gleason, I AM ALS, Augie’s Quest, ALS TDI, ALS Cure Project, UW Medicine) with promoting ALS legislation and policy issues, increasing awareness and raising funds to find effective treatments and cures, and providing much needed support services for ALS patients and families. He was privileged to be a Patient Fellow at the 2019 International Symposium on ALS/MND and has also served as a Consumer Reviewer for the DoD ALS Research Program. Phil is a graduate of the University of Washington where he was on the 1991 National Championship UW Football team. He has spent the past 25 years building a career in developing technology solutions for brands such as Sony, Hewlett Packard, and Home Depot.
Lamont and Chanel Hobbs
High school sweethearts, Lamont and Chanel have been married 28 years. They are the proud parents of two daughters, Angel (22) and Deja (21). As their lives were flourishing, raising their young children, the inevitable 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, 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 BS in Accounting from Hampton University and a MBA 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 BS in Business Management from Saint Paul’s College, MBA from Old Dominion University and a Masters in Theology from Virginia Union University. This couple lives a full life. They are advocates for ALS, raising over $375,000 for the ALS Association. Lamont and Chanel also provide ALS awareness to 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 lives in Boston with his three adult children. He
has B.S. in Business Administration with a minor in Marketing and an A.S. in Computer Science from Keene State College. Upon Graduation in 1986, he moved to Boston and began working as a Manufactures 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 5th as 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 ALS.
Steve has raised over $150K 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 on The ALS Association Massachusetts Chapter Board of Directors, and he Chairs the Chapter’s Advocacy Committee. In 2019 and 2020, Steve attended The ALS Association Advocacy Conference in Washington, D.C., and recently, he formed a group of people with ALS and ALS caregivers to lobby at the state level in Massachusetts.
In 1994 Carianne Meystrik graduated from the University of Tennessee, Knoxville with a degree in medical technology. Following graduation, Carianne managed a specialty laboratory as part of the Hemophilia Clinic at the UT Medical Center until taking on a full-time mom and homeschool teaching position. 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 over $100,000 for the Walk to Defeat ALS.
Lora Pollari-Welbes has been part of the ALS family since 1989 when her father passed away at the age of 62. Since then she has lost two sisters and a brother to ALS and is aware of her own potential onset. Lora has participated in numerous ALS Advocacy Days and appreciates connecting with other family members and ALS patients. Born and raised in Minnesota, Lora has lived in Arlington since 1993 with her husband Matt and their daughter, who is a sophomore in college. Lora is the Executive Director of Encore Learning, an organization promoting lifelong learning and engagement for older adults.
Susan M. and Steven J. Reuter
Susan has a bachelor’s degree in social work; master’s degree in counseling. She was a guidance counselor at Wisconsin State Prisons and served on the Sherwood Area Jaycette 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 Township Harrison northern tip of lake Winnebago where he still lives 65 years later. 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 of the Sherwood Area JCI (1975-1995) and now holds the highest International honor of 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 his wife Susan.
John and Loretta Russo
Since John Russo’s diagnosis in 2013, he and his wife Loretta Russo have been active advocates for people with ALS at both the federal and state level in New Jersey. John has also been a consumer reviewer for the Congressionally Directed Medical Research Program since 2015. Prior to 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.
Michael and Wendy Wilson
Hello! My name is Michael Wilson and my beautiful wife and caregiver is Wendy Wilson. We have a daughter named Londyn. I graduated from Oklahoma State University as a mechanical engineer in 2007. I worked for a local architectural and engineering firm doing mechanical engineering design for commercial buildings. I was diagnosed with ALS in February 2017 at the age of 35 and I stopped working in July of 2020 due to my condition. My wife is a registered dietitian and has stopped practicing in order to care for me.
We try to be involved in the ALS community, especially helping new people with ALS by showing them some of the solutions that have made life a little easier for us. Our family continues to be as active as we can by spending time with family/friends, going on road trips across the country, and making the most of our situation.
David Doane from Maine is also a PCAC member.
ALS Focus Steering Committee
The ALS Focus Steering Committee provides insights on potential survey topics, survey questions, and best practices for survey design, communications, and implementation. Committee members also consult on ALS Focus deliverables including datasets, reports, and publications. The Steering Committee is overseen by ALS Association leadership and its members represent the drug development industry, academia, government, people with ALS, and caregivers. The committee meets at least four times a year as needed.
Current Steering Committee Members are:
- Kristina Bowyer, Ionis Pharmaceuticals
- Michelle Campbell, Ph.D. and M.S., U.S. Food and Drug Administration
- Ron Faretra, Patient and Caregiver Advisory Committee (PCAC) Chair
- Ken Faulconer, M.B.A., Massachusetts General Hospital
- Christi Kolarcik, Ph.D., University of Pittsburgh/ALS Association Board of Trustees
- Paul Mehta, M.D., Centers for Disease Control and Prevention
- Robert Goldstein, Biogen
- Reshma Punjani, M.P.H., Centers for Disease Control and Prevention
- Alex Sherman, M.Sc., Massachusetts General Hospital
ALS Focus Working Groups
The Steering Committee spent time forming working groups to convene members with specific expertise. Each working group is centered on a specific task regarding ALS Focus.
The Working Groups are:
- Survey Development
- Community Engagement and Recruitment
- Survey Platform