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 caregivers 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 [email protected].

Patient and Caregiver Advisory Committee Biographies

Image
Doug Clough

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.

Image
Ellen Corinidia

Ellen Corinidia
PCAC Co-Chair
Northern New England Chapter

Ellen Corindia grew up in southwestern NH and graduated from Norwich University in 1997 with a Bachelor of Science in Nursing. She was commissioned as a Nurse Corps Officer in the Navy where she served on active duty at military hospitals in Bremerton, WA, and Groton, CT. Ellen lives in Marlborough, NH with her fiancée, Leif Moore. In the fall of 2001, she had the initial symptoms of sporadic ALS in her left thumb and was evaluated by her beloved neurologist, Dr. Merit Cudkowicz at Massachusetts General Hospital in Boston. 

Ellen was medically retired from the Navy in 2002 and has received excellent care from the Veterans Administration Medical Center in White River Junction, VT. By 2008, she discovered the world of adaptive sports through the VA. They support and organize an extensive network of opportunities across the country in conjunction with local non-profit volunteer groups. She raced a two-man sailboat in San Diego harbor controlling it independently with a joystick, went surfing, kayaking, water skiing, biking, rock climbing, to name a few, and looks forward to downhill skiing each winter in a sit ski or standing up using a “walker on skis.” She loves the thrill of adventure and leaving her power wheelchair behind.

Over the years, Ellen has been involved with Augie’s Quest, the MDA, ALS Therapy Development Institute, Mass General Hospital, and A.L.S. Family Charitable Foundation of Bourne, MA. She is currently fundraising to support the Healey ALS Platform trial and the Healey Center’s Expanded Access Protocol program.

Image
placeholder image

David Doane

Northern New England Chapter

Bio coming soon!

Image
Larry Falivena

Larry Falivena
ALS Association Board of Trustees Member
North Carolina Chapter

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.

Image
Ron Faretra

Ron Faretra
South Carolina Chapter

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 and his stepson have all been very supportive of the disease. They understand fully the impact it will have on all their lives.

Image
Natalie Fernandez

Natalie Fernandez
Golden West Chapter

Natalie Fernandez is a recent graduate from the MBA program at the Philadelphia College of Pharmacy. She is an entrepreneur in the ALS disease space and currently works as CFO and Program Director of the Martha Olson-Fernandez Foundation (MOFF). Since 2012, MOFF has donated over $400,000.00 to ALS patient care and research projects. Natalie is actively seeking a project management role at a biopharma company with a neurodegenerative disease pipeline. Her mother, Martha, passed away from bulbar onset ALS in 2012. Natalie was Martha’s primary caregiver.

Image
Troy Fields

Troy Fields
Florida Chapter
 

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.

Image
Phil Green

Phil Green
Golden West, Orange County, and Evergreen Chapters

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.

Image
Shelly Hoover

Shelly Hoover, Ed.D.
Greater Sacramento ALS Association Chapter

Shelly, a U.S. Navy Veteran, was diagnosed with ALS in 2013. Prior to her ALS diagnosis, she served as a public-school administrator. After medically retiring, she became active in advocacy and supporting others in the ALS community. Shelly is on the Board of Directors of the Greater Sacramento ALS Association Chapter and a NEALS Research Ambassador. Shelly types with eye-gaze technology, and recently published a work of fiction; and a second novel is in progress. She lives in the mountains of Northern California with her husband, Steve. Her two children and four grandchildren live nearby.

Image
Michelle Melland

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.

Image
Carianne Meystrik

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.

Image
Lora Pollari-Welbes

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.

Image
Susan M. and Steven J. Reuter

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.

Image
John Robinson

John Robinson, Ed.D.
Florida Chapter

CW5 (Ret) John A. Robinson recently retired, after nearly 32 years of active federal service. He last 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. John 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. John’s military awards and decorations include the Legion of Merit, Bronze Star Medal (1 OLC), Defense Meritorious Service Medal, and Meritorious Service Medal (5 OLC). John is married to the former Karen Roberts, of Pittsburgh, Pennsylvania and they have one son, Robert.

Image
John and Loretta Russo

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.

Image
Michael Trainor

Michael Trainor
Greater Philadelphia Chapter

Michael is the Owner and Publisher of Coffee News South Jersey, which is a weekly fun reading paper and with its first printing in July 2012. His wife, Suzanne, was an integral part of the business. She was a tremendous and beloved kindergarten teacher and gave her students love, encouragement, and a thirst for learning, in a challenging low-income school district in Bridgeton, NJ. Suzanne was an excellent stepmother to our two children. As the owner of my business, I had flexibility to be with Suzanne for appointments and care giving. 

Suzanne, my wife, passed away in my arms from complications due to an aggressive form of ALS in May 2018. In the summer of 2016, we were walking on the beach and as she was in fine health. Starting in September of 2016, she began to drag her foot, but we just thought that she pulled something. Within a month, it progressed where her balance was affected. From November 2016, many tests were administered, and she was wheelchair bound by June 2017. At this point, the neurologist diagnosed her with ALS. By the end of 2017, she had no control over her legs, arms, hands, lost her ability to talk, and had limited ability to eat. In March 2018, we had a celebration of life, as she did not want a large funeral and wanted the ability to say goodbye to all her family and friends. The ALS was aggressive, as she passed away within 10 months from diagnosis or 18 months from initial symptoms.

Image
Jeremy Van Tress

Jeremy Van Tress
Oregon and SW Washington Chapter

Jeremy Van Tress was born and raised in Orange County, CA, and at 19 years of age served a two-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 U.S. 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, OR with his college sweetheart, Courtney, and their six children.

 

ALS Focus Steering Committe

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
  • Ellen Corinidia, Patient and Caregiver Advisory Committee (PCAC) Co-Chair
  • Ken Faulconer, M.B.A., Massachusetts General Hospital
  • Chad Heatwole, Ph.D., University of Rochester
  • Zeena Huang, Genentech
  • Christi Kolarcik, Ph.D., University of Pittsburgh/ALS Association Board of Trustees
  • Andrew Madsen, Genentech
  • Paul Mehta, M.D., Centers for Disease Control and Prevention
  • Megan Murphy, M.P.M., Biogen
  • Reshma Punjani, M.P.H., Centers for Disease Control and Prevention
  • John Russo, Patient and Caregiver Advisory Committee (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

 

 

Back to Main Page