The ALS Association
ALS Ice Bucket Challenge Progress

ALS Focus Structure

The ALS Association is proud to bring together a diverse and broad array of key opinion leaders into ALS Focus from industry, academia, government, and most importantly people with ALS and caregivers. Through collaboration, ALS Focus will make a tremendous impact on driving the perspectives of people with ALS and caregiver into major programs and policies in the ALS space.

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 Co-Chairs of the PCAC are Dr. Ken Menkhaus and John Russo, who also serve 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 ALSFocus@alsa-national.org.

Patient and Caregiver Advisory Committee Biographies

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Doug Clough
Member of the International Alliance of ALS/MND Associations
Arizona Chapter

April 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.



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Michelle Melland
Mid America Chapter

Michelle Melland lives in Kansas City, MO, with her husband Paul and their twin 16-year-old daughters. She is a graduate of the University of Notre Dame, an Army veteran, and spent 19 years in corporate America. Michelle was diagnosed with ALS in 2011 and has been on a ventilator in her home for the last five and half years. She is currently a freelance writer and authors a book review blog.



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Ken Menkhaus
PCAC Co-Chair
North Carolina Chapter

Dr. Ken Menkhaus is C. Louise Nelson Professor of Political Science and Vice-Chair of the Faculty pro tem at Davidson College. He specializes in the Horn of Africa and has published in the fields of development, conflict analysis, humanitarian response, peace operations, peacebuilding, state-building, and violent extremism. His work involves both academic research and policy work with the U.S. government, the United Nations, the World Bank, and non-government organizations. He has testified five times before Congressional committees and has appeared on CNN-International, MSNBC, PBS News Hour, BBC, and other media outlets. He teaches courses on Policy Analysis and on Philanthropy, and the nonprofit sector, and follows issues related to the nonprofit sector closely. In March 2018, Menkhaus was diagnosed with ALS, and since then has redirected some of his research and policy work to ALS advocacy, including service on several ALS Association committees and a blog devoted to ALS at https://kenscaucus.home.blog/.



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Carianne Meystrik
Tennessee Chapter

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.



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Lora Pollari-Welbes
DC/MD/VA Chapter

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 for the past 27 years 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.



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Susan M. and Steven J. Reuter
Wisconsin Chapter

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.



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John Robinson, EdD
Northern New England and Oklahoma Chapters

CW5 John A. Robinson most recently served as the third Chief Warrant Officer of the US Army’s Field Artillery branch. He has served as a leader and staff officer at every echelon of the Joint force, including 14 different staffs at Battalion, Brigade, Division, Corps/Joint Task Force, Army Service Component Command/Theater Army, Combatant Command, Army Command and two numbered Air Forces and will retire in March 2020, after nearly 32 years of active federal service. CW5 Robinson holds a bachelor’s degree in education from the University of Maine; three master’s degrees in military art & science (U.S. Army Command & General Staff College), international relations (Webster University) and criminal justice (Troy University); and a doctoral degree in education from Argosy University. CW5 Robinson’s awards and decorations include the Legion of Merit, Bronze Star Medal (1 OLC), Defense Meritorious Service Medal, and Meritorious Service Medal (5 OLC). CW5 Robinson is married to the former Karen Roberts, of Pittsburgh, Pennsylvania and they have one son, Robert.



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John and Loretta Russo
PCAC Co-Chair
Greater Philadelphia Chapter

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 for four years. 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 for 36 years. They enjoy hosting friends and relatives at our home in southern New Jersey.



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Jeremy Van Tress
Oregon and SW Washington Chapter

Jeremy Van Tress was born and raised in Orange County, California, and at 19 years of age served a 2-year humanitarian mission for his church in central Chile. His experiences in Chile were formative and inspired his decision to become a social worker and eventually serve in the US Army and Army Reserves.

As a first-generation college student, Jeremy graduated with a Bachelor of Social Work from Brigham Young University-Hawaii (2007) and a Master of Social Work from the University of Hawaii at Manoa (2009). After serving honorably for six years in a special operations unit and in the conventional Army, Jeremy separated from active military service to become a physician and provide medical care to vulnerable populations. During his first semester of medical school, Jeremy experienced unexplained neurological symptoms later diagnosed as Lou Gehrig’s disease. In August 2018, Jeremy was officially medically retired from the Army Reserves.

After being diagnosed with ALS, Jeremy saw a need for accessible social work services for people with ALS and their families. Consequently, he founded Smile Inside, Inc., a nonprofit social work telehealth agency that provides free and accessible online services, including counseling, advocacy, awareness, and social research, exclusively for people with ALS and their families. Jeremy is also a social work doctoral student at Walden University and is currently working on his dissertation, which examines the relationship between socio-ecological resilience and self-determination for life-sustaining treatments among people with ALS. He was selected as a 2019 Pat Tillman Scholar and currently serves on several national committees of collaborative ALS organizations. Jeremy resides in Corvallis, Oregon with his college sweetheart, Courtney, and their six children.



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Tony and Karen Vick
Mid America Chapter

Tony was a sports enthusiast and participant from a very early age, excelling in basketball and baseball. He also has a love of golf. Tony is a young man who has always had the desire to serve and after graduating high school, he enlisted in the U.S. Army and served 16 years in the U.S. Army and U.S. Air Force Reserves, reaching the rank of Master Sergeant .Tony graduated from the University of Central Missouri with a degree in finance and worked for 10 years in the Civil Service at Whiteman Air Force Base. On Sep 20, 2017 he was diagnosed with ALS and since then Tony has suffered significant loss of function in his arms, hands, legs, and feet and the disease is now beginning to affect his breathing, swallowing, and speech. As the disease has taken its toll, Tony was medically retired from the Reserves and from Civil Service. While he can no longer participate in the sports he loves most, he enjoys watching them. Tony feels blessed to have amazing support from his wife Karen.



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Courtney Watts
Massachusetts Chapter

Courtney began working as a Personal Care Attendant for people with ALS in September 2017. During the first year and a half, provided care for a woman named Linda, who sought out many opportunities for Courtney, including shadowing at the ALS Clinic at Massachusetts General Hospital and Compassionate Care ALS. In February of 2019, Courtney was a panelist representing ALS for Biogen’s Rare Disease Day Rare Disease Caregiver Panel. Courtney is also currently enrolled in the Nursing School at Lawrence Memorial/Regis College and intends to become an ALS nurse upon graduation.

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.

The Steering Committee Members are:

  • Kristina Bowyer, Ionis Pharmaceuticals
  • Michelle Campbell, Ph.D. and M.S., U.S. Food and Drug Administration
  • Ken Faulconer, M.B.A., Massachusetts General Hospital
  • Clifton Gooch, M.D., University of Southern Florida/ALS Association Board of Trustees
  • Chad Heatwole, Ph.D., University of Rochester
  • Zeena Huang, Genentech
  • Christi Kolarcik, Ph.D., University of Pittsburgh/ALS Association Board of Trustees
  • Paul Mehta, M.D., Centers for Disease Control and Prevention
  • Ken Menkhaus, Ph.D., Patient and Caregiver Advisory Committee (PCAC) Co-Chair
  • Megan Murphy, M.P.M., Biogen
  • Lasair O’Callaghan, M.B.E. and M.P.H., Biogen
  • Christine Pozniak, Ph.D., Genentech
  • Reshma Punjani, M.P.H., Centers for Disease Control and Prevention
  • John Russo, PCAC Co-Chair
  • Alex Sherman, M.Sc., Massachusetts General Hospital
  • Christine Zizzi, University of Rochester

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
  • Governance
  • Community Engagement and Recruitment
  • Survey Platform
  • Publications

 

 

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