November 2015

Still leading a full life – An interview with IPF member David

David’s (darbygreenboy) username comes from the village in the English countryside where he lives and is still an active member of the community. We caught up with this grandfather of 10 – a former business owner, mayor and leader of the town council to talk about living with IPF. Here’s what we learned … Tell

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Meet Gus from the PatientsLikeMe Team of Advisors

Say hi to Gus, another member of your 2015-2016 PatientsLikeMe Team of Advisors. Gus is someone who’s been very competitive and focused, has always felt that there was nothing he couldn’t accomplish or overcome, and spreads positivity wherever he goes. So when he was diagnosed with familial ALS, positive SOD1 gene – unknown variant, in

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More than heartburn: GERD awareness around Thanksgiving

To a lot of folks, this time in November means a holiday feast with all the trimmings – turkey, stuffing, mashed potatoes, pies and other rich foods. But for people living with gastroesophageal reflux disease (GERD), it might mean something different. Today marks the beginning of the 17th Annual GERD Awareness Week (November 23-29). GERD is

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Natalie shares her story as caregiver for her mother with Alzheimer’s disease

When was your mom diagnosed with early-onset Alzheimer’s disease? What was your mom’s diagnosis process like for you, for your mom, and for the rest of your family and friends? My mother, Maxine, was diagnosed with early-onset Alzheimer’s disease in April of 2010. She had been living on her own for about one year, following her

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“I am not a quitter, I never have been” – An interview with lung cancer member Jacquie

For Jacquie (Jacquie1961), a business owner and entrepreneur from New Mexico, 2013 was the worst year of her life – she’d lost two beloved pets to old age and then was diagnosed with lung cancer, which soon turned into colon cancer. After rigorous chemotherapy and the adoption of a new dog, Roman, Jacquie joined PatientsLikeMe

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The Schwartz Center for Compassionate Healthcare names their National Compassionate Caregiver of the Year Award recipient

Last night, our partners at the Schwartz Center for Compassionate Healthcare announced the recipient of their National Compassionate Caregiver of the Year (NCCY) Award, a national recognition program that honors outstanding healthcare providers who display extraordinary devotion and compassion in caring for patients and families. Of six nominees, this year’s NCCY Award recipient is Rick Boyte,

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Getting “Patients Included” right Part II: Planning a patient-centric event

You may remember Part I of this blog that focused on the experiences of two PatientsLikeMe members who attended the Kidney Health Initiative’s (KHI) workshop, “Understanding patients’ preferences: Stimulating medical device development in kidney disease,” back in August. KHI is a partnership between the U.S. Food and Drug Administration (FDA) and the American Society of

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Compassion for all: Terry Yoas, CNA – Schwartz Center NCCY Award finalist

Tonight, the recipient of the National Compassionate Caregiver of the Year (NCCY) Award, from our partners at the Schwartz Center for Compassionate Healthcare, will be presented to one of six nominees at the 20th Annual Kenneth B. Schwartz Compassionate Healthcare Dinner in Boston.  Today we’re highlighting the sixth and final nominee for the NCCY Award.

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