Team of Advisors

Advocacy 101: See our new guide!

Interested in getting into advocacy for your health condition community this year? Raising your voice to boost awareness about your condition or the reality of being a patient takes courage. Yet it’s pretty simple to get started with advocacy, so together with members of our Team of Advisors (a team of highly active members and advocates in their condition communities), we’ve put together a new guide called “Advocacy 101.” See/expand and print the guide here! More than 30,000 PatientsLikeMe members indicate that advocacy is one of their interests on their profile. Join PatientsLikeMe or log in now to find and connect with these members here (filter the list to show others with your same condition using the “Condition” search field in the left-side menu). Have any advocacy pointers you’d like to add? Add a comment below or log in to share with the community here!

Meet Lindsay from the PatientsLikeMe Team of Advisors

  Meet Lindsay (Shyandspicy), a member of the PatientsLikeMe 2016-2017 Team of Advisors living with bipolar II, fibromyalgia and diabetes. We recently caught up with Lindsay to learn how she finds purpose in her relationships with her family, her faith and helping others.  Keep reading to get to know her story and how she tackles the obstacles of living with her conditions through research, self-advocacy and connecting with others. What gives you the greatest joy and puts a smile on your face? There used to be not much that could give me joy or even make me smile. Now I can say one of my biggest joys in life is bringing pride to God and my family and other supportive loved ones. I have put them through a lot of strife and knowing that they recognize my hard work and attempts at trying to correct the past and become a better version of me brings joy. Along with that, I get a smile on my face when I spend time with my son, who is 13 and my little sister, who is 30 years younger than me. Experiencing life again through their eyes has a whole new meaning! What has …

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Meet Gary from the PatientsLikeMe Team of Advisors

Meet Gary (tupelo), a husband, father and grandfather who lives with Parkinson’s disease. Gary’s also a member of the 2016-2017 Team of Advisors. He believes that physical exercise slows the progression of Parkinson’s and practices Tai Chi and Qigong on a regular basis. Check out Gary’s story and his outlook on life with Parkinson’s: “Accepting your condition doesn’t mean you must resign yourself to it.”  What gives you the greatest joy and puts a smile on your face? There are many things that give me joy in life. In my personal life, I love sports, reading a good book and drinking a glass of good wine.  In my professional life, I’m motivated by taking on the challenge of new opportunities, taking an idea and creating a business around it, or public speaking. However, nothing gives me more joy in my life than my family. They are the reason I push myself so hard to understand all there is to know about Parkinson’s Disease while searching for a way to stop or slow the progression. My phone, my computer and my desk all contain pictures of my two young grandsons.  That’s what brings a smile to my face each day. How …

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Meet Jacquie from the PatientsLikeMe Team of Advisors

Say hello to Jacquie (@Jacquie1961), another member of the 2016-2017 Team of Advisors. We chatted with Jacquie recently about how she lives with her condition and what it meant to become part of this year’s Team of Advisors; “Joining the team is allowing me to…help others who are newly diagnosed or those who think they have something wrong with them.” Jacquie also opened up about her passion for animals, especially her dog, Roman: “He’s precious, loving, beautiful and really has the personality of a human.” What gives you the greatest joy and puts a smile on your face? I would have to say I get the most joy out of being with my dog, he’s been the greatest addition to my life right before I was diagnosed. He’s precious, loving, beautiful and really has the personality of a “human.” Of course my new kitty is an added bonus of love and fun. All in all, I have a tremendous passion for animals. What has it been like for you managing multiple conditions? First off, I had Lung Cancer. Fast forward months, I have a new oncologist and stage 4 metastatic lung to colon cancer. I became the 13th documented case …

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Meet Glenda from the PatientsLikeMe Team of Advisors

  Meet Glenda (gagafor2), a member of the 2016-2017 Team of Advisors. Glenda is a wife, mother and grandmother who finds great joy in making others happy. She’s also living with idiopathic pulmonary fibrosis (IPF). Recently, Glenda told us about coming to terms with the “unknown” in her future and coping with anxiety: “PatientsLikeMe became my lifeline to information and patients who knew what I wanted and needed to know.” Check out the rest of her story and learn how Glenda hopes to represent other members of the IPF community. What gives you the greatest joy and puts a smile on your face? I would have to say making others happy makes me smile. I love to give and do special things for others, it gives me great joy I get so excited when I can find that special gift or plan that special surprise for someone else. My family gives me the greatest joy of all. I have had a wild ride so far with my husband of 45 years and my children and grandchildren. We moved many times throughout the last forty years to different parts of the country, making so many incredible friends and have having such …

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Meet Laura from the PatientsLikeMe Team of Advisors

  Say hello to Laura (thisdiva99), another member of your 2016-2017 Team of Advisors. Laura chatted with us about what it’s like to live with bipolar disorder and why she thinks it’s essential to find and connect with others who live with the same condition: “It is of the utmost importance to connect with other Bipolar Warriors. Mental illness can be very isolating.” Laura also shared some details about her background as a professional opera singer. She’s performed all over the world and has even won a Grammy! Get to know Laura and read her advice for others who are living with chronic conditions. What gives you the greatest joy and puts a smile on your face? Hearing the laughter of my husband, my nieces, and my nephews brings me ultimate joy. What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges? My greatest obstacle in living with bipolar disorder is having to pretend that I am “OK” all the time. People with mental illness often find that they must hide their symptoms, and live in a quiet kind of …

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Meet John from the PatientsLikeMe Team of Advisors

Have you met John (JohnJFB126)? He’s another member of the 2016-2017 Team of Advisors.  John is a musician, husband and father of four. He’s also living with MS. For John, living with an “invisible” disease is challenging, and he hopes for more compassion and understanding from others in the future. Here, John shares how he finds critical support in the PatientsLikeMe community: “It reinforces that I am not alone.” What gives you the greatest joy and puts a smile on your face? What gives me the greatest joy and puts a smile on my face is knowing that I helped someone. What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges? The greatest obstacle living with this condition is its, oftentimes, invisibility. Especially when compared with other chronic and disabling conditions. Societal shifts need to occur resulting in more a compassionate or understanding of these challenges are a more concise, comprehensive overview of the disease and how it truly is idiosyncratic. How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like? I …

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Meet Kimberly from the PatientsLikeMe Team of Advisors

We’d like to introduce you to Kimberly (firefly84), another member of your 2016-2017 Team of Advisors. Kimberly lives with autonomic neuropathy and describes what it’s like to manage a condition that is at times invisible, how she tackles each day by taking “baby steps” and focusing on the moment at hand. Before becoming ill, Kimberly worked as a registered nurse and discusses the challenging transition from “caregiver to the one needing care.” As someone who knows firsthand what it’s like on both sides of the patient/care team relationship, Kimberly shares why it’s important to her to help change the system and, in doing so, leave “a lasting impact that will benefit all generations to come.” What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges? Prior to getting ill, I was working as a Registered Nurse in all areas of the hospital and had recently started doing home health and hospice as well. Suddenly I went from caregiver to the one needing the care. It’s been hard giving up the control factor. Healthcare professionals in general make horrible patients because …

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Meet Jim from the PatientsLikeMe Team of Advisors

  We recently announced the 2016-2017 Team of Advisors, and now we’ll be introducing each member so you can get to know them better as they kick off their year-long term. First up is Jim (jangrilah), a member of the MS community. Jim is a new grandfather, a husband and an international executive and leadership development and change management consultant. He sat down with us recently to talk about finding appreciation in the “upside-down” reality of life with MS. Below he shares his experience advocating for himself and how he built a strong relationship with his doctor. What gives you the greatest joy and puts a smile on your face? Family moments. What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges? Mobility challenges limit what I can do/where I can go. In the U.S. things are pretty good; overseas, people tend to recoil from any appearance/behavior that strays from the “norm.” How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like? MS produces a wide variety of often invisible but strange and obtrusive …

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PatientsLikeMe Welcomes Next Patient Team of Advisors

  CAMBRIDGE, Mass, November 14, 2016—PatientsLikeMe has named 11 members to its patients-only 2016–2017 Team of Advisors, which this year will focus on elevating the patient voice. Team members will share their stories, participate in community initiatives, and give real world perspectives to our industry and research partners. “Each year, our Team of Advisors has proven an invaluable source of inspiration and support for the PatientsLikeMe community,” said PatientsLikeMe CEO Martin Coulter. “We look forward to learning from this year’s team as we partner to identify how we can change healthcare for the better.” More than 500 PatientsLikeMe members submitted applications for this year’s Team of Advisors. Those selected represent a range of medical and professional backgrounds and ages. They are living with a cross-section of conditions, including amyotrophic lateral sclerosis (ALS), autonomic neuropathy, bipolar disorder, epilepsy, fibromyalgia, idiopathic pulmonary fibrosis (IPF), lung cancer, lupus, multiple sclerosis (MS) and Parkinson’s disease. Members named to the team include: Cris Simon, Gary Rafaloff, Ginny Emerson, Glenda Rouland, Hetlena Johnson, Jacquie Toth, Jim Seaton, John Blackshear, Kimberly Hartmann, Laura Sanscartier and Lindsay Washington. John Blackshear is living with multiple sclerosis (MS) and looks forward to the opportunity to share his story with others, and …

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