12.16.20 Guilty By Association

I’ve had the honor of serving as a Patient Fellow for the International Symposiums on ALS/MND in both Glasgow and Perth. This Fellowship is about increasing the voice of people with ALS/MND at the Symposium sessions and following up with patient-centric recaps. This year’s symposium was held virtually which opened many opportunities, specifically the increase in Patient Fellows in attendance. Introducing them to y’all is truly inspiring, most of the information below comes directly from the person.

Seth Christensen, United States

• 45 years old 

• I reside in Utah

• Married to superwoman. We have four kids

• Undergrad at BYU; MBA at Babson College 

• My pre-ALS career was in corporate acquisition integration

• Was diagnosed at 35 after a year of symptoms

• Am Cofounder of ALS Crowd, a non-profit led by patients, looking for tech solutions to advance ALS research.

• Am a Patient Fellow at Denali Therapeutics

Jack Gray, United States

– Jack lives in St. Charles MO – a suburb of St. Louis

– 68 years old and married to Bonita for 46 years. 

– 3 adult children and 7 grandchildren (soon to be 9) 

– BA and Masters from Temple University and MBA from St. Ambrose University

– Worked 19 years for John Deere Corporation and 17 years for IBM Corporation as a senior manager

– Diagnosed with ALS in April of 2016

– Mainly voice and walking issues at this time. 

– Appointed NEALS ALS Ambassador in 2018

– 2020 participated in CDMRP (Congressional Directed Medical Research Program) as a Client Evaluator of various research project requests. 

Philip Green, United States

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.  A loving husband to his wife Jennifer, Phil is also a dedicated father to four children (Arianne-18, Hunter-17, Parker-13, and Whitney-10).  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 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.  

Here is a list of the various organizations that he works with and the role he serves with each:

• Augie’s Quest, Leadership Council

• Team Gleason, Board of Directors

• International Alliance of ALS/MND Associations, PCAC (PALS & CALS Advisory Council)

• International Alliance of ALS/MND Associations, Innovation and Technology Council

• ALS Association, PCAC (PALS & CALS Advisory Council)

• Cytokinetics, Patient Advisory Board

• Clara Health, Breakthrough Crew

• MT Pharma, Technology Advisory Board

• HEALEY Platform Trial, Patient Advisory Committee

• HEALEY Platform Trial, Recruitment and Retention Committee

• UW Medicine Center for Translational Muscle Research, Patient Advisor 

• CDMRP ALS Research Program, Consumer Reviewer

• I AM ALS, Clinical Trials Committee Co-chair

• I AM ALS, Legislative Affairs Committee

• I AM ALS, Community Advisory Committee

• Lou Gehrig Day Committee, Co-founder

• NEALS, Research Ambassador

• International Symposium on ALS/MND, Patient Fellow (2019, 2020)

• American Academy of Neurology (AAN), ALS Quality Measures Review Subject Matter Expert

Madeline Kennedy, United States

I am from upstate NY but I currently live in Florida. The weather here is much friendlier for wheelchair living. My story is told on my personal website www.ConquerALS.com

Steven Kowalski, United States

I live in Boston MA with my three children, Tyler – 28, Drew – 25 and Anna – 20  and Silver Lab Lou  – 3 

– Was diagnosed in August 2017 with lower limb onset ALS

– Retired in 2018 from Apple Inc. as a Sr. Account Executive for 23 years.

– My new self appointed title is…The Impatient ALS Patient. 

– I spend my days advocating for ALS both at the national and state level for ALS research and patient care.

– Hobbies include all Boston professional sports teams, live music, fine food & wine and traveling.

– I serve on the Board of Directors for the MA ALS Association and chair the Advocacy committee

– A NEALS Research Ambassador in the CRLI Program

– Participated in several clinical trials at MGH/Healey Center

– Have been a pALS speaker or pALS clinical trial advisor for Novartis, Biogen, Amelex, Alexion & Harvard Medical School

– To date have raised over $100K for ALS research and patient care.

– Have a strong interest/passion in how mobile and wearable technology can play a larger role in ALS research, patient care and early detection.

Anna Maerker, United Kingdom

Jan Mattingly, Canada

Kenneth Menkhaus, United States

59 years old, married to a wonderful Swede, and father of three – Oskar 20, Kaisa 18, Erik 14.

Originally from  Cincinnati Ohio, but from age 12 grew up in Columbia SC. Graduated from Xavier University (Ohio) 1982, PhD Univ South Carolina 1989.  

Spent much of my 20s and early 30s abroad, in France, Somalia, Kenya, and two years teaching at the American University in Cairo, Egypt (1989-91). Went back to Somalia to work in support of famine relief for two months in 1991 and got my first taste of war. Went back to serve as political advisor in the UN peace operation in Somalia in 1993-94, saw more war.  Have been teaching at Davidson College in NC for 30 years.   Most of my professional work and research is in conflict analysis, hybrid governance, state-building, humanitarian and development work.  I have been going back to the Horn of Africa almost every year for fieldwork and consultancies. Fieldwork with weak legs is getting hard so I may not have much more of that in me.

At Davidson, one of the courses I developed is Philanthropy and the Non-Profit Sector, which I have taught for 20 years. That gives me a special interest in the work of non-profits in the ALS space.

I was diagnosed with ALS March 2018.

Since summer 2019 I have served on several ALS Association national committees and in March joined the ALSA Board of Trustees.

I also serve as a NEALS research ambassador and am on the Board of advisors for Patients Like Me.

I continue to teach  at Davidson full-time and hope to stay on in that role as long as I can, but have stepped away from some administrative roles I’d been playing.

I place a lot of value on collaborative work and a culture of respect and cooperation in the non-profit sector – I’ve seen where it works well and that serves constituents very well, and I’ve seen where non-profits in a shared space  get into dysfunctional rivalries, and that never serves the interests of constituents.  Working with fellow PALS who are working with a number of different ALS groups is a great opportunity to build ties that transcend organizations and build a strong sense of trust and shared goals, so I’m delighted to have the chance to work with all of you!

Cari Meystrik, United States

• Turned the big 5-0 this year. Can’t believe I made it this far! Very thankful!

• Graduated from the University of TN – Knoxville with a BS in Medical Technology 

• Managed the laboratory in the Hemophilia Clinic at UT Medical Center

• Diagnosed with ALS in 1998 at the age of 28

• Have 4 amazing kids – Jonathan – 20, Graceanne – 23, Rebecca – 25, Jacob 28. Youngest two still in college/grad school, Rebecca is a nurse in the army serving with her husband, and Jacob just finished grad school 

• I homeschooled my kids for 10 years – what a privilege 

• Before ALS, I was an athlete (runner), and I enjoyed hiking, biking, camping, anything outdoors 

• After ALS, my favorite thing to do is watch my kids play sports, still watching Jonathan play college soccer. 

• Married to the love of my life, Chris, for almost 29 years. Now that we are empty-nesters  we enjoy weekend adventures that usually include Civil War battlefields and Breweries, watching SEC football, watching movies, and hanging out in the mountains 

• NEALS Research Ambassador since 2012

• ALS Focus PCAC 

• Knoxville Walk Committee since 2010

• Raised over $160K for ALS research and patient care services 

• Patient advocacy in DC for 20+ years 

• Peer mentor for newly dx pALS

• Consumer Reviewer for CDMRP ALSRP 2020

• Have participated in one clinical trial and 12 research/observational studies 

• Have been in a wheelchair since 2002, can’t use arms or legs but can still transfer with assistance, still able to eat and drink, just began using NIPPV last week for few hours/day 

Michael Robinson, United States

I am 49 (almost 50 but refuse to jump the gun saying I am 50). 

– Married to my wife of 25 year Tina, and have two adult children – Cam 21, and Lacey – 23. 

– Reside in Chicago, IL, but are from Kingston, Ontario Canada, and have lived in Virginia, Indiana, Japan, and Illinois. We have two awesome dogs – Chance & Cheetoh.

– Main hobbies of action sports – waterskiing, snowboarding, skateboarding, surfing, windsurfing, etc… So ALS was not an easy Dx to adjust to. I have managed to adapt and still get out on the water on an adaptive wakeboard, and on the snow on a sit-ski. Would love to surf with a sit down surfboard set-up and hope to pursue once we can dig out of Covid. I also want to learn to power paraglide using a sit down trike et up. 

– Physician – I trained in Adult Psychiatry, Child & Adolescent Psychiatry and Psychosomatic Medicine. I practiced for a number of years – and did Psychiatry in the Medically Ill – focused on Neurodegenerative Disorders and HIV/Hepatitis C. 

– Joined the Pharmaceutical industry in 2004 and have worked in clinical drug development bringing treatments to market around the world in areas including schizophrenia, bipolar disorder, depression, generalized anxiety, fibromyalgia, Parkinson’s, chronic pain, osteoarthritis of knew and hip, chronic low back pain, and neuropathic pain. The last half of my career was in leadership within the industry  and my last job was leading the US&PR medical organization at Abbvie – a team of around 400 people. 

– Since Dx, I prioritized time with Family and travel. I have dipped a number of toes in ALS advocacy – attending Capital Hill twice, yearly fundraising, consulting with a couple biotech companies in the ALS space, Platform Steering Committee, liaising with Industry on Expanded Access Programs, and advocating on behalf of other patterns to obtain good care. 

– Since Covid, I have found art – and spend a good portion of my day – drawing and painting….its my form of medication – and I am surprisingly loving it. 

Bert van Hoeijen, Canada

I’m 46, married to Christopher. I was born in the Netherlands and moved to Toronto, Canada by myself when I was 25. We used to go back twice a year for a visit.

I studied Clinical Chemistry and education. I taught for 18 years here in Toronto.

Last year we took a year off, to travel around the world. In Japan I noticed things were wrong. In New Zealand I found out I have ALS. We went on to visit Australia, Singapore and the Netherlands but I had this hanging over my head. I was officially diagnosed January 2nd, of this year. The neurologist wanted to wait longer, but i didnt think that was necessary. So we pushed for an emg.

I participate in a trial at the Neuro CRU at McGill university in Montreal. They have quite a few trials going on. It’s a 5 hour drive, but it’s worth it since we don’t have many trials going on in Toronto. 

I like bicycling, gardening, cooking (mainly because I like to eat good food) and watching tv (Rick & Morty, Doctor Who, Star Trek, to name a few.)

The community here has been nothing but wonderful. I’m very grateful for all these supportive people I have met.

Erin Vierstra, United States

– 39 years old and diagnosed in March 2020 with fus als.

– my mother and all siblings passed from fus als in the 80s/90s and my sister and brother have just been confirmed of the mutation this month.

– I am from Madison, wi and currently live there but have spent time living in Boston (mba from babson), Athens ga vail and Denver

– have spent many years in tech startups and am currently an account executive at a software company called Zendesk

– skiing is my greatest passion- was an instructor during my 20s in vail. Also enjoy biking, yoga And traveling 

– participating in an ASO experimental new drug trial at Columbia university since June. 

Bruce Virgo, United Kingdom

Bruce Virgo is a maritime lawyer qualified in Australia, England/Wales and Scotland. Australian, he has lived in Edinburgh for over 20 years. Following symptoms in 2013, Bruce was diagnosed with MND in late 2014. He led the shipping team at a London legal office until May 2016, before deterioration of his condition forced the relinquishment of that role.

Since 2014 Bruce has been participating in various MND research projects, raising awareness of MND and fundraising. He is a former Symposium Patient Fellow and is currently on the PALS/CALS Advisory Council of the International Alliance of ALS/MND Associations.

The motto for this program is: Nothing about us without us.

That’s the impressive list I’ve been bragging about. I’m proud to be guilty by association with these warriors. One comment that was shared,

“For me, living in an ALS body that’s increasingly isolated, I start or tend to think of my experience as somehow mine alone. The greatest personal benefit of the symposium was to remind me of the breadth of research and global nature of what I’m experiencing personally. “

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