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… Continue reading 2018 National ALS Advocacy Conference: A recap from Team of Advisors members Rich & Paul
Tag: ALS community
Circulation issues & ALS
Do you have circulation issues like swelling (also called edema) or a burning (or cold) sensation in your legs and feet? How do you cope? From compression stockings to therapeutic massage and limiting salt intake, pALS are managing their circulation issues in some creative ways. Why do some people with ALS experience poor circulation? For many… Continue reading Circulation issues & ALS
Remodeling for ALS? Tips from a pALS who’s been there
Thinking about remodeling your home but don’t know where to begin? You’re not alone. Many people living with ALS consider a remodel to accommodate their needs as their condition progresses but don’t know where to start. To get some real-world advice, we talked to Jonathan Woodman, a pALS who recently renovated his garage into what… Continue reading Remodeling for ALS? Tips from a pALS who’s been there
In the market to live better: ALS members weigh in
Over the years, the PatientsLikeMe ALS community has shared what products help them manage their new normal with ALS. From eye-gaze devices to elevated toilet seats and alternating pressure mattresses, we compiled a list of some of the products that you, the experts, are talking about in the forum. Check it out: When it gets… Continue reading In the market to live better: ALS members weigh in
Worth a thousand words: A day in the life of Larry
As a child, Sarah Howell loved art. She got her first camera at 6 years old and realized, over time, that she had a way of connecting emotionally and expressing herself through photos. Now, she has her own studio. Her passion? Capturing genuine family moments. Sarah often stays overnight in the home of the family… Continue reading Worth a thousand words: A day in the life of Larry
Paul Wicks on the power of sharing data
Back in December, our VP of innovation, Paul Wicks, Ph.D., spoke at the annual International Symposium on ALS/MND in Dublin. The goal of the annual meeting is to share new understandings of ALS/MND as quickly as possible through collaboration between leading researchers around the world. Now, we’re sharing a video of his presentation about what… Continue reading Paul Wicks on the power of sharing data
Out of the Office: PatientsLikeMe Visits ALS Pioneer Steve Saling
Earlier this month, PatientsLikeMe Co-Founder and President Ben Heywood, along with marketing intern Jenna Tobey, went to visit the Steve Saling ALS Residence, which is part of the Chelsea Jewish Foundation’s Leonard Florence Center for Living in Chelsea, MA. The foundation has been providing high-quality care for over 90 years and includes the nation’s only specialized… Continue reading Out of the Office: PatientsLikeMe Visits ALS Pioneer Steve Saling
Share Your Data to Untangle ALS!
Our ALS Community recently broke the 5,000-member mark, making it the largest of its kind in the world as well as the ideal platform for expedited research. And that’s just what we’re working on. Since the community’s launch in 2006, we’ve conducted a number of research studies, both internally and in collaboration with leaders in… Continue reading Share Your Data to Untangle ALS!
ALS Patient Interview: Never Give Up
We continue our series this week of getting to you the person, not just the “patient.” Today’s interview is with “iceberg,” a member of our PatientsLikeMe ALS Community and another 2010 newsletter interviewee. Read on to learn more about what keeps him motivated, how his condition has affected his work life and how he… Continue reading ALS Patient Interview: Never Give Up
ALS Awareness Month: ALS Patients Are “In Motion”
Did you know there are more than 4,500 patients in the PatientsLikeMe ALS community sharing and learning from each other every day? Outside of our community, patients are also teaming up to raise awareness and money for ALS research. Here is a highlights video of ALS members who have participated in our PatientsLikeMeInMotionTM program, stepping… Continue reading ALS Awareness Month: ALS Patients Are “In Motion”