Humor and a passel of grandchildren keep Lee (slicky) going. He’s been living with ALS for nearly three decades and refuses to let his condition get the best of him. Now retired, he delights in his family and is very active in our forums – welcoming new members, doling out information and sharing his positive… Continue reading “Do not give up, find a reason to keep going.” – An interview with ALS member Lee
“You may not like it, but make the MOST of it.” – An interview with IPF member Nikki
When Nikki (Nimiha) was diagnosed with IPF in 2010, she was already a survivor of both ovarian cancer and a heart attack. Staying positive and up-to-date on new information is now this retired RN’s best defense – and she’s been sharing it with her IPF family on PatientsLikeMe since March. We had the chance to… Continue reading “You may not like it, but make the MOST of it.” – An interview with IPF member Nikki
“I feel as if I’ve been given more time to spread awareness.” – An interview with ALS member Lisa
Lisa (Ltbeauti) was studying to become a teacher in Richmond, VA, when she was diagnosed with ALS—the same type that affected both her sister and father. After joining PatientslikeMe in 2008, Lisa has made it her mission to stay proactive about her health and, like any good teacher, offer support and share her experience with… Continue reading “I feel as if I’ve been given more time to spread awareness.” – An interview with ALS member Lisa
A Q&A with Alec Mian, CEO of Curelator
Our partners at Curelator Headache enable individuals with migraine to discover their personal triggers, dismiss supposed triggers that are not associated with attacks, and identify factors that reduce the risk of having an attack (“protectors”). Understanding your personal triggers – environmental, physical, or emotional – and how they may be acting in combination to provoke attacks is… Continue reading A Q&A with Alec Mian, CEO of Curelator
From our partners at One Mind: Zack Lystedt’s football story
Accidents happen, anywhere to anyone. Whether it’s from playing soccer or football, snowboarding, riding a bike, competing in synchronized swimming, slipping on ice or falling off of a ladder. In sports, even with the best safety procedures in place, there are still accidents. That’s why our partners at One Mind have started the #TreatBrainsBetter campaign.… Continue reading From our partners at One Mind: Zack Lystedt’s football story
RWJF Awards Grant to PatientsLikeMe to Develop New Measures for Healthcare Performance
Patient Network to Work with the National Quality Forum to Ensure Patients Drive Healthcare Value CAMBRIDGE, MA., December 8, 2015—PatientsLikeMe has been awarded a $900,000 grant from the Robert Wood Johnson Foundation (RWJF) to help jumpstart changes that will amplify the patient voice in the measurement of healthcare performance. A portion of the grant funds… Continue reading RWJF Awards Grant to PatientsLikeMe to Develop New Measures for Healthcare Performance
Meet Christel from the PatientsLikeMe Team of Advisors
We wanted to take a minute to introduce you to Christel, one of your 2015-2016 PatientsLikeMe Team of Advisors. Christel who was 12 years old when she was diagnosed with type 1 diabetes, shares openly that she spent a lot of her teens and twenties ignoring its existence. But 32 years later, Christel has made… Continue reading Meet Christel from the PatientsLikeMe Team of Advisors
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… Continue reading Still leading a full life – An interview with IPF member David
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… Continue reading Meet Gus from the PatientsLikeMe Team of Advisors
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… Continue reading Natalie shares her story as caregiver for her mother with Alzheimer’s disease