2018 Team of Advisors

“Breaking up” with a doctor after 14 years — Bernadette’s journey to better care

PatientsLikeMe member Bernadette (yellsea), who’s on the 2018 Team of Advisors, has been living with Parkinson’s disease (PD) since 2002. She recently filled us in about switching specialists after more than a decade with the same neurologist, and advocating for herself after enough “red flags” popped up in her interactions with that physician. Out with the old Bernadette lives in remote area in the Great Lakes Region of New York. The first PD symptom she noticed was her handwriting getting small (a common early symptom of PD known as micrographia) — and her first doctor dismissed it as “writer’s cramp.” When she began having tremors in her hand, she started seeing a neurologist with a strong reputation in Syracuse, about a 40 minute drive from her home. “He’s very well-respected in the area,” she says. “In fact, a lot of the [other] doctors won’t step on his toes.” Bernadette was experiencing serious side effects with some of her PD medications — including compulsive gambling out of the blue (a reported side effect of Mirapex) — but her neurologist asked her very few questions about how she was feeling, and never raised the topic of side effects. “My husband didn’t like him,” Bernadette says of her …

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ALS Conference

2018 National ALS Advocacy Conference: A recap from Team of Advisors members Rich & Paul

Last month, Rich and Paul from this year’s Team of Advisors attended the 2018 National ALS Advocacy Conference in Washington D.C. to learn about the latest ALS research, network, and meet with members of congress on Capitol Hill. Just over 600 people attended the event, including 100+ pALS and 240 first-time participants. The event started on Sunday with opening remarks followed by an afternoon session, reception, networking dinner and entertainment. Paul and Rich had the opportunity to share with pALS about PatientsLikeMe. Read on to learn how it went and what they accomplished. (front row: Holly Crowder, Stacy Crowder, Kathy Tavano, Team of Advisors member Paul and Tanner Hockinsmith from the ALSA; back row: Stephen Reynolds from Senator Cronyn’s office) Day 2: Research & Policy Opportunities to participate in research: Rich (and other participants) gave saliva samples to the Centers for Disease Control (CDC) and blood to the National Institutes on Health (NIH). Interview with Rich: Rich spoke about the ALS Registry Taskforce that exists to brainstorm and come together to find ways to increase participation. Public Policy sessions: These sessions included time to prepare for the visit to Capitol Hill, a Congressional Panel with bipartisan Congressional staff and remarks from US Senator Bill Cassidy. Interview with Pat …

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Confessions of a research study addict: “It’s powerful to use a devastating diagnosis for good.”

Elizabeth is a member of the 2018 Team of Advisors living with MS and a self-described research addict. Here’s what she had to say about her experience contributing to research and why “it’s powerful to use a devastating diagnosis for good.” I’ve always been a sucker for a focus group. Give me some free pizza and I’ll tell you everything you want to know about your product, service or ad campaign. In fact, I got into advertising as a career because I liked the research part of it so much. So, when I was diagnosed with multiple sclerosis, I applied that same mindset to my disease approach. The first MS research study I did came a few months after my doctor prescribed Avonex. For someone with a virulent needle phobia, a weekly intramuscular shot sounded almost worse than having MS. So I spent the next few months imagining myself on a beach—right before I tried in vain to push an inch-and-a-half needle into my leg. The meditation didn’t quite take, but my passion for research didn’t waiver (thank goodness for a husband who didn’t mind giving shots and, later, the Avonex quick inject pen!) Next came the EPIC Study — …

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PatientsLikeMe names 2018 Team of Advisors

  CAMBRIDGE, Mass., December 14, 2017—PatientsLikeMe has named 13 members to its 2018 Team of Advisors, a patients-only group that collaborates with the company on new research and product development, advocates on behalf of patients, and provides real-world perspectives to industry and PatientsLikeMe partners. “This is now our fourth Team of Advisors, and its members have consistently been some of our most vocal and important partners,” said Executive Vice President of Marketing and Operations Michael Evers. “Their insights on everything from product development to design and research, and their strong role as advocates, will be invaluable as we progress with our more advanced initiatives.” Evers said those initiatives include DigitalMe, which will merge genetic, biological and experiential data from multiple sources to create a personalized, digital representation of health and disease, and give people actionable information to improve their health and health care. “More than half of the 2018 Team of Advisors are participating in DigitalMe. They will be a great resource as we adopt more advanced biological measures to find new signals about health, disease and aging.” Nearly 1,000 PatientsLikeMe members submitted applications for this year’s team. The 2018 members include 10 women and three men representing a cross …

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