In 2017, the following individuals living with ALS acted as Patient Fellows during the ALS/MND International Research Symposium held in Boston that December.
Stephen Finger, Ph.D.
Stephen Finger was diagnosed with ALS in 2013. A vocal advocate, his articles have appeared in the Huffington Post, he appeared on the BBC and he actively participated in drafting the FDA Guidance Document. He serves on the Board of Advisors for the Every90Minutes Foundation and is on the Board of Directors of HopeNow4ALS. He was awarded the 2014 Stephen Milne Adventurous Spirit Award by the ALS Therapy Development Institute.
Stephen grew up in Arlington, VA. After earning degrees from Princeton and Duke, Dr. Finger was an economics professor at the Moore School of Business at the University of South Carolina. He now resides in Atlanta, GA with his wife Cara and their two kids, Mary Adair (7) and James (5).
I was diagnosed with Bulbar-onset ALS in March 2017. My speech is almost gone, but I can still walk and I have limited use of my hands. In September 2017 I became the 4th person in San Diego, California to start the new drug, Radicava.
My career has included newspaper reporting, magazine editing, hospital public relations, and freelance medical writing. But, the highlight of my life has been my husband, Ron (married 50 years this past August), my three adult children and five grandsons.
After receiving a bachelor’s of journalism degree at the University of Missouri, I was a reporter for newspapers in Missouri and Virginia. When my husband finished his military obligation, we moved to California with one-year-old daughter, Lisa. That seemed as good a time as any to have our second and final child. We even followed the instructions in a book called “How to Choose Your Baby’s Sex” to try for a boy. As one friend noted, we obviously didn’t read the fine print. Our twin boys were born the day after Christmas.
In San Diego, I became a researcher, then copyeditor for Psychology Today magazine until it moved to New York. Rather than return to time-intensive news reporting, I began a 28-year career in public relations and medical writing. My favorite PR jobs were with Scripps Clinic and Research Foundation, ScrippsHealth (five hospitals in San Diego County), and University of California, San Diego (UCSD) School of Medicine and Medical Center. After I “retired” from UCSD, I wrote freelance medical articles for publications such as Arthritis Today, The Rheumatologist, ENT Today, Neurology Today and various UCSD publications. I am most proud of the eight years I wrote a monthly two-page news-feature section in the academic American Journal of Transplantation.
In high school, I was Editor in Chief of my weekly newspaper. I moved on to study Geology in college and graduate school. When the job market failed me, I worked in various jobs such as delivery truck driver and office equipment salesperson before going back for a second master’s degree in hydrogeology and then working in groundwater issues related to the gold mining boom of the 1990’s in Nevada. Then after being a stay at home aunt and mom, I worked as an Administrative Secretary at a large public elementary school, a job I loved. I continued my love of writing with a blog about bicycling. I trained hard for a Ride to Defeat ALS ride, because I have ALS in my family.
My mom, my aunt, and my cousin all died from ALS. My own symptoms of ALS started in December of 2015. It started with slurred speech. My diagnosis was confirmed in June 2016, on the day before my 56th birthday. By August, I had a feeding tube and soon took no food by mouth. My speech declined and I had to become proficient with text to speech to keep working until November 2016. Starting right after my diagnosis, I turned my love of writing into a blog about living with ALS. My husband and my 17 year old son are my copy editors.
My mother was confirmed to have the C9ORF72 gene expansion, so when I had my DNA tested, I was not surprised that I have it too. This gene mutation can cause ALS or Frontal Temporal Dementia (FTD). There are many cases of FTD in my family also. I am participating in three research studies for the C9ORF72 gene mutation, one for biomarkers and another studying the FTD aspect of the gene mutation, plus one to look at my spinal MRI to try develop another way to diagnose ALS. I am committed to doing whatever I can to move this devastating incurable disease to a curable one.
I was diagnosed with ALS at age 33, less than a year after completing 5 triathlons, including a 70.3-mile half Ironman.
Thanks to slow progression and a careful training regiment, I have continued to participate in races. Since diagnosis, I have completed 27 races on my recumbent trike, including 4 triathlons, 12 half marathons, and 5 marathons. I dedicate each race to someone with ALS who inspires and teaches me how to live with this disease. I share the profiles of my honorees, as well as my experience with the disease, on my blog (www.teamdrea.org/blog).
In 2015, I encouraged my friends and family to take on a race that represented a challenge to them and use it as an opportunity to raise money for ALS research. Team Drea has now grown to 150+ athletes in 22 states, Canada, and the U.K, and has raised almost $250,000 for ALS research. In 2016, we formalized our fundraising by creating the Team Drea Foundation.
Prior to ALS, I was an urban planner focused on developing quantifiable metrics for local governments to measure their environmental, economic, and social sustainability. My career goal was to leave my community more sustainable than the way I found it – which is still true, except my definition of “community” is now my ALS family, and the Team Drea athletes I challenge to appreciate what their bodies can do.
I was deeply honored to receive the 2016 Stephen Heywood Patients Today award from the ALS Therapy Development Institute.
I am a pharmacist, board certified in psychiatric pharmacy. I worked for the State of California for 31 years in various clinical and administrative capacities. Most of my career was spent at Medi-Cal (California Medicaid), where I reviewed drugs for addition to the formulary and designed a good deal of Medi-Cal’s electronic pharmacy claims processing system. For the final eight years before my retirement, I created and led the Pharmacy Analysis Group within Medi-Cal. We worked with Medi-Cal’s massive claims database to do research, looking for areas of potential care improvement, as well as detecting fraud and abuse. I retired in 2012.
I have Primary Lateral Sclerosis (PLS). I had my first fall in 2001 (while attending a health conference.) The progression has been slow. I first saw a physician about neurological problems in 2003, but was not diagnosed till 2004, as a second opinion. I walked without a cane until 2010, and without a walker until 2015. I do not, as yet, need a wheelchair or scooter, except for times when I must walk a lot (e.g., Disneyland).
I retired from practice in 2012, and traveled to Taiwan for a year and a half, where my wife and I lived. We returned in 2013, and have been largely retired since then. We enjoy travel by car and airlines. I still drive, though I will be the first in line to buy an autonomous car when they become available. I am happily married, with four adult children and seven grandchildren. My wife and I both speak Mandarin Chinese pretty fluently, and I practice it every chance I get.
Virtual Patient Fellows
Being diagnosed with ALS makes it hard to plan really far into the future. The following two individuals applied and were selected to serve as Patient Fellows in June 2017, however, due to a variety of factors, they informed the Committee that they were unable to attend the Symposium in person just a short few weeks out from the event. Both Andrew and Steph have had an immense impact on the execution of this program and keeping them involved directly in it going forward will only add to our ability to achieve the mission of the Fellowship. Therefore, the Committee asked them to stay on with the group as “Virtual Fellows” and they agreed.
I was diagnosed in 2013 with ALS while working for a software company focused on Mobile analytics, I became acutely aware of the lack of progression and wellness tracking for patients and instinctively knew something better than a 20yr old subjective survey was needed to scientifically measure progression and so we set out to develop a FREE app to empower patients and their care teams.
Prior to ALS, I spent 24+yrs in data analytics and performance management working for Cognos (acquired by IBM) and then Roambi (acquired by SAP) working with fortune 500 companies , as well as president and co-founder of Information Integration a BI & DW consultancy for 8yrs. I was an avid mtn biker , snowboarder and volunteer wrangler and photographer at Westernaires ( a volunteer youth equine organization with 1000+ members).
Stephen Courdin is CEO & Co-founder of ALS NeverSurrender Foundation (100% volunteer led non-profit).
Andrew Niblock is the Director of Schoolwide Initiatives and the former Head of Lower School at the Greenwich Country Day School, Greenwich, CT. Prior to his current position he was the Director of Lower School at Hamden Hall Country Day School and spent eleven years as a teacher, coach and administrator at Isidore Newman School in New Orleans.
In July 2016 Andrew was diagnosed with ALS. In the time since, Andrew and his family have become more hopeful, not less. Andrew’s life’s work is education, and this is the lens through which he views ALS.
There has never been a more exciting time in ALS science. The creativity that comes with looking at problems from different angles, collaboratively, and with unprecedented advances in technology, gives justified cause for hope.
NOTE: Fellows wrote and submitted their own bios.