A few weeks ago, Amy shared about living with a rare genetic disease in her Team of Advisors introduction post. Today, it’s Steve’s turn to share about his unique perspective as a scientist who has been diagnosed with ALS. Below, learn about Steve’s experience with ALS research, his views on patient centeredness and what being a part of the Team of Advisors means to him.
About Steve (aka rezidew):
Steve is a professor of Developmental Psychology at the University of North Carolina at Chapel Hill. He was diagnosed with ALS in the fall of 2013 and his symptoms have progressed with increased debilitating weakness in his arms and hands. He was excited to join us as an advisor to lend his expertise on research methodology to the team. He has authored or coauthored an impressive 6 books, 91 peer reviewed publications, and 26 published chapters. When we talked about giving a background on research methods to the team, Steve said ‘I can teach it.’ He is passionate about helping teach others and believes “as a scientist who has been diagnosed with ALS, I regret having this disorder but I am eager to use my unique perspective to promote and possibly conduct relevant research.”
Steve’s view of patient centeredness:
“The obvious perspective is that patients should have some voice in decisions regarding what research should be conducted, what the participants in research should be expected to do, how participants in research should be selected, and how results of research should be communicated.”
Steve on being part of the Team of Advisors:
“Being a member of the Team of Advisors has helped me understand a wide array of perspectives on patient-centered research based on my interaction with fellow patients who have various health problems and who have various levels of knowledge about research. I am impressed with the consensual consolidation that has emerged from the Team’s dialogue about research.”
Steve’s experience with bibrachial ALS and research on ALS:
“A diagnosis of ALS can be associated with several different configurations of symptoms. Some PALS (Patients with ALS) begin with problems in their feet and legs, some begin with difficulty talking and/or swallowing, and some, like me, begin with weakness in their hands and arms. Also, some PALS start relatively young and have other PALS in their family. And, some PALS have dementia. We all lose our ability to breathe eventually and our array of symptoms broadens, but our initial experience can be very different. I am surprised and disappointed that the medical community has not done more to identify our subtypes and to track our progression within our subtype.
Developing a PALS taxonomy would help doctors provide support to PALS that is most relevant to our needs. It would also help us share our experience with fellow patients and learn from each other. An ALS taxonomy would also be extremely relevant for research on treatments. Ongoing research on ALS using rodents with SOD1 mutations may yield an effective treatment someday, but for now PALS would feel more supportive of this research if it used models that reflect the different taxonomies of ALS. We would feel even more supportive if more research allowed us to participate in studies that focus directly on medicines that could help our ongoing progressive terminal illness.”
More about the 2014 Team of Advisors
They’re a group of 14 PatientsLikeMe members who will give feedback on research initiatives and create new standards that will help all researchers understand how to better engage with patients like them. They’ve already met one another in person, and over the next 12 months, will give feedback to our own PatientsLikeMe Research Team. They’ll also be working together to develop and publish a guide that outlines standards for how researchers can meaningfully engage with patients throughout the entire research process.
So where did we find our 2014 Team? We posted an open call for applications in the forums, and were blown away by the response! The Team includes veterans, nurses, social workers, academics and advocates; all living with different conditions.
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