Despite their expertise and contributions, people living with and impacted by ALS/MND are still blocked from attending some scientific forums sponsored by organizations that are supposed to be serving the community and organizations still limit their participation and ignore their concerns. As such, ALS/MND advocates turned to the HIV community to learn from how they demanded — and received — seats at decision-making tables. Inspired by the Denver Principles, a landmark document drafted by HIV/AIDS activists in 1983, ALS/MND advocates sought to create the first guidance document to outline people living with ALS’/MND’s expectations regarding their inclusion in matters directly affecting them. The Morris Principles serve as a social contract solidifying the necessary involvement of people living with ALS/MND.
The Morris ALS/MND Principles Team Active Members
Christa is an organizer and consensus-builder in both her political and volunteer work. She is currently a co-lead of the Legislative Affairs Team of I AM ALS, a patient-led community that provides critical support and resources to people living with ALS, caregivers and loved ones.
One of Christa and the team’s most recent legislative successes was the grassroots advocacy campaign in support of the ACT for ALS legislation. Christa was recognized by President Biden at the bill signing and also previously profiled in The Providence Journal as an ALS advocate. Christa is also Chair of the East Greenwich Town Democratic Committee and a High School English teacher. She currently lives in Rhode Island with her husband Olin (diagnosed with ALS in 2018) and three sons ages 12, 15 and 18.
Jenny Gore Dwyer
In 1985, Jenny met her future husband Pat on a commercial fishing boat in Alaska. From there, they bought their own boat, got married, built a business and raised a family. As they grew their fishing business, Jenny and Pat became involved in fisheries politics. Together they lobbied the state and federal officials on fisheries issues. When Pat was diagnosed with ALS in 2005, their fisheries lobbying experience helped them navigate through their ALS diagnosis. They worked to raise funds, raise awareness and bring attention to ALS at the federal level.
Jenny, Pat and their families and friends have helped to raise over $500,000 for ALS research. After Pat passed away in 2013, Jenny continued her advocacy work. During her 16 years of Advocacy, most of her time is spent working behind the scenes, mentoring other families and raising awareness. She firmly believes that a treatment or 20 will be found. She also believes that changing ALS at the federal level will provide ways to make the stunning ALS diagnosis easier for families to access potential drugs, treatments and resources.
Since her diagnosis with ALS at age 32, Gwen Petersen has poured her energy into advancing the science of her disease. Gwen has participated in more than thirty-five observational ALS studies, 10 of which are ongoing, as well as two interventional trials with an experimental therapy. Prior to her diagnosis, Gwen worked as a Recruiter for one of the top ten medical centers in the country.
Becky has been living with ALS since November 2020. She is an accomplished musician with a Bachelor of Music degree from the Hartt School of Music. She has over 20 years of experience as a private clarinet and saxophone teacher and has performed with the Wellesley Symphony Orchestra and the Claflin Hill Summer Winds. She also has experience in the insurance industry. Since her diagnosis she has become involved with the I AM ALS Clinical Trials Team and co-chairs their Legislative Affairs Team. She leads her own weekly ALS advocacy group and has organized a walk for ALS ONE. She was a congressional meetings panel member for the ALS Association’s 2021 Advocacy Day. She was honored to represent the ALS Association Massachusetts Chapter on the field at Fenway for the first Lou Gehrig Day. Becky is a volunteer member of the Patient Advisory Committee at Sanofi Genzyme.
Deb was a Physical Therapy Assistant/Manager of an outpatient orthopedic physical therapy clinic when her husband of 25 years, Tim was diagnosed at the age of 48 with ALS in 2012. She left her job to become Tim’s primary caregiver with incredible support from their three amazing children Brad, Sammie and Jake. Since Tim’s diagnosis and ultimate passing in 2014, Deb has been using her personal ALS experiences and passion to be the change she would like to see in the ALS world.
With a commitment to empathetic and impactful advocacy, she works to raise ALS awareness and increase funding for ALS research and family services. As Co-Chair of the I AM ALS Legislative Affairs Team, Deb recruits, motivates and mentors new advocates to build relationships with congressional leaders to secure public policies and accelerate ALS therapies and cures. Deb has been advocating since 2012 for FDA regulatory flexibility and has proudly met with more than 100 congressional offices while successfully advocating for the passage of the 2020 ALS Social Security Disability Insurance Act and the 2021 ACT for ALS bills.
Irene’s 15+ year legal and compliance career spans the federal judiciary, private law practice and the corporate sector. She has represented global pharmaceutical and financial services companies in commercial litigation, as well as labor and employment matters. Irene is also regarded as an effective change agent with expertise in compliance program transformation and delivery, risk management, data analytics, information privacy and security.
Irene became involved with ALS advocacy upon her father’s diagnosis in 2020. Stunned by the message of hopelessness from healthcare providers and lack of information about investigative treatment options, Irene was fortunate to connect with a team of revolutionaries at I AM ALS who enabled her to turn pain into purpose. She has since dedicated her time to the successful passage of the ACT for ALS, the development of the Morris ALS/MND Principles and other initiatives that will expedite our path to treatments and cures.
Cathy Collet’s career has led her down some paths that have also informed her approach to patient advocacy. After working for Eli Lilly and Company for 18 years, she became one of the founders of a small consulting practice specializing in benchmarking studies. She recently retired from that role after 23 years. When her Mom died from ALS in 1997, she thought that it was outrageous that the prognosis was the same that Lou and Eleanor Gehrig faced in 1939. Her passion is to improve public policy and clinical research to change that prognosis for others. She has testified at the FDA multiple times and has also been a MedX e-patient scholar. Cathy volunteers for several ALS organizations. She is one of the founders of www.MoreThanOurStories.org and is on the selection committee for the ALS MND Symposium Patient Fellows Program. She recently received the Humanitas Award from Saint Mary’s College for her ALS advocacy work. You can always find her independent voice on Twitter as @ALSadvocacy or on her blog at ALS-Advocacy.blogspot.com.
Since his diagnosis with ALS, Phil has made his life’s work improving the fight against this disease. He is active with many patient advocacy organizations and serves as a volunteer patient advisor to several companies working on ALS therapies and technologies including: Augie’s Quest, Leadership Council; Team Gleason, Board of Directors; International Alliance of ALS/MND Associations, PALS & CALS Advisory Council and Innovation & Technology Council; Cytokinetics, Patient Advisory Board; Clara Health, Breakthrough Crew; MT Pharma, Technology Advisory Board; Healey Platform Trial, Patient Advisory Committee and Recruitment & Retention Committee; UW Medicine Center for Translational Muscle Research, Patient Advisor; CDMRP ALS Research Program, Consumer Reviewer; I AM ALS, Clinical Trials Team Co-chair, Legislative Affairs Team, Community Advisory Team; NEALS, Research Ambassador; and International Symposium on ALS/MND, Patient Fellow (2019, 2020).
Sandy lives near Lake Truckee, CA with her husband of 32 years and their three amazing children ages 24, 22 and 20. She worked for Hewlett-Packard for almost 30 years, managing multiple global teams for the consulting business.
She was diagnosed with ALS in January 2018. She was grateful to be part of the advancing science as a phase 3 participant in the Brainstorm NurOwn clinical trial. She traveled with her family to South Korea four times for the Corestem therapy. She is in the Brainstorm EAP and feels lucky to receive three more spinal infusions. Sandy vowed to make much-needed changes in this destructive disease upon diagnosis. She partnered with Brian Wallach, founder of I AM ALS, in 2018 to lead the Patient Advisory Council and Clinical Trials Team. Standing on the shoulders of giants, she worked with the FDA leaders to obtain the finalized guidance document for clinical trials in September 2019. She, along with the Clinical Trials Team, have met with over 30 ALS drug sponsors to introduce/strongly encourage the Patient centric trial design (PaCTD) ratings. We created an ALS Caucus which currently has over 150 members. Recently we passed the bill Accelerating Access to Critical Therapies for ALS Act (ACT) which ensures expanded access in trials, as well as establishing a Consortium at the FDA level.
Living with ALS since 2013, Shelly is an advocate for veterans and others living with ALS. The disease has taken her ability to speak, but not her voice. She works relentlessly to advance legislation and improve policies. She has authored two published novels and is attending law school to hone her advocacy skills. Shelly is a former public school administrator and current grandmother of five. She lives with her husband, Steve, in North Carolina. She is active with many ALS organizations and efforts including: I AM ALS, Veterans Affairs Team; I AM ALS, Legislative Affairs Team; VA, ALS Executive Team; General Mik Project Lead; CDMRP ALS Research Program, Consumer Reviewer; Healey Platform Trial, Recruitment & Retention Team; NEALS, Research Ambassador; NEALS, PeACE Committee Member; Answer ALS, Research Ambassador; FDA Industry Guidance Document, ALSA Patient Advisory Committee; FDA Guidance Meeting, 2015; and Former Board Member of the Greater Sacramento ALS Association.
My life was the American dream, complete with a picket fence. I married my high school sweetheart and the love of my life, and we had three beautiful children. I had my career as a part-time teacher and volunteer extraordinaire, and Mike was a successful business analyst. Everything changed in January 2015 when Mike got diagnosed with ALS. We were quickly able to enroll him in a promising clinical trial at Mayo Clinic- Rochester. He was one of the 48 participants in the phase 2 clinical trial. Mike responded to the investigational therapy and was in the treatment group. Our hope was short-lived; he could only get one dose. Mike and I fought for continued access to treatment and for changes to the archaic regulatory pathway. Sadly, Mike died waiting for change in 2019. I am a fierce advocate for ALS and co-lead for the I AM ALS Legislative Team. I reside in the outskirts of Denver, CO, where I continue to teach English as a second language to elementary students and enjoy being a mother to three amazing young adults. I promised Mike I would stay in the fight to end ALS. No family, no children and no spouse should go through what we did. I spend my time working to enact policy changes needed to make a difference. Act for ALS is an essential first step. I work to change an archaic FDA regulatory system that impedes bringing therapies to people living with ALS. I make expanded access real for ALS patients by debunking myths about expanded access interfering with clinical trials.
In addition, a team of Community Advisors will contribute to the vision and fulfillment of the Principles