2 posts tagged “2018 Team of Advisors”

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

Posted March 14th, 2018 by

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 — “an intensive observational study of over 500 people with MS who have been carefully studied since 2004.” I even got my parents involved as a control group. Once a year for twelve years I’ve been getting evoked potentials, an eye screening, a hand-eye coordination exam, and a bonus MRI — I also play a dreaded number addition memory game. I’m proud to be part of this study—last week I was lucky enough to see some of the preliminary findings that I contributed to (hint: there is some AMAZING stuff happening in the MS therapy world.)

I made a brief, but unsuccessful, journey into a Copaxone clinical trial where I had the honor of getting lipoatrophy faster than any patient my doc has ever seen. My case even made it into a medical journal. And while the dents in my thighs never let me forget this one, I like to think my experience helped someone else avoid their own unseemly dents.

My research obsession doesn’t stop with MS. I fit a patient profile for a breast screening study to determine if mammograms alone or with a DNA test can improve outcomes for detecting early cancers. I was happy to be a part of this work, plus I learned I don’t have a carrier gene—a nice bonus of helping out.

Yes, health studies are a bit addictive to me. I get a thrill from trying a new approach or having my data contribute to a new protocol. And while there are different levels of research (especially when it comes to drug trials), every observation, every data point moves our collective understanding about MS and chronic illness forward. I’m grateful to play a role in that; it’s powerful to use a devastating diagnosis for good.

So, what’s next? The other day I heard about an MS gut microbiome study. The details are…a little gross. But sign me up!

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PatientsLikeMe names 2018 Team of Advisors

Posted December 14th, 2017 by

 

CAMBRIDGE, Mass., December 14, 2017PatientsLikeMe 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 section of medical and professional backgrounds, ages and conditions, including: amyotrophic lateral sclerosis (ALS); bipolar disorder; breast cancer; epilepsy; fibromyalgia; lupus; major depressive disorder (MDD); multiple myeloma; multiple sclerosis (MS); Parkinson’s disease; and rheumatoid arthritis (RA). The members named to the team are: Elizabeth Asdorian; Kip Edwards; Marcia Holman; Melinda Lowery; Bernadette Mroz; LaKeisha Parnell; Rich Pollock; Christine Von Raesfeld; Rosie Stambaugh; Paul Tavano; Alysia Taylor; Susan Tomasic; and Jeanette Alston-Watkins.

Rosie Stambaugh joined PatientsLikeMe in 2010, and is living with MDD and fibromyalgia. “There’s an isolation when you’re chronically ill that can work against you. PatientsLikeMe gives you a lifeline to hold onto. You’re talking to people and sharing data and insights, so that everyone can help each other. As an advisor, I will be able to raise my impact by providing hope and answers to those getting diagnosed, today and in the future.”

The 2018 Team of Advisors recently kicked off its 12-month collaboration with PatientsLikeMe in Cambridge, Massachusetts, and will convene several times during the upcoming year.

About PatientsLikeMe

PatientsLikeMe, the world’s largest personalized health network, helps people find new options for treatments, connect with others, and take action to improve their outcomes. The company has worked with every major pharmaceutical company and a range of government organizations to bring the patient voice to research, development and public policy. With more than 600,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 100 research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

 

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