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
Category: ALS
The record on research: Catching up with TOA member Cris
Back in January we introduced Cris, a member of the 2016-2017 PatientsLikeMe Team of Advisors living with ALS. She’s also a fierce patient advocate who’s participated in several clinical trials since her diagnosis. We recently caught up with her to learn about her experience with clinical trials and why access and awareness of clinical trials… Continue reading The record on research: Catching up with TOA member Cris
ALS Reversal: A chat with Duke’s Dr. Rick Bedlack
“This is the fastest enrolling trial in ALS history.” A brightly-colored blazer and the determination to make a difference for ALS patients are two of Dr. Rick Bedlack’s defining characteristics. Dr. Bedlack is a tenured associate professor of Medicine/Neurology at Duke University. He’s also the director of the Duke ALS Clinic that’s partnering with… Continue reading ALS Reversal: A chat with Duke’s Dr. Rick Bedlack
“I feel it needs to be told”: Member Cathy shares a memory
Last year, we spoke with Cathy (Catrin) about her experience transitioning into a caregiver role for her husband, Fred, who was living with bulbar onset ALS. Shortly after that, Fred passed away, and to mark the year of his passing, Cathy recently shared the following memory. Here’s what she had to say… “I have been… Continue reading “I feel it needs to be told”: Member Cathy shares a memory
Meet Cris from the PatientsLikeMe Team of Advisors
Say hello to Cris (@Criss02), another member of the 2016-2017 Team of Advisors. Cris is a proud grandparent and a vocal advocate for the ALS community. She sat down with us and opened up about what it’s really like to live with her condition. Cris recently presented at the ALS Advocacy conference in Washington D.C.,… Continue reading Meet Cris from the PatientsLikeMe Team of Advisors
PatientsLikeMe Co-Founders Jamie and Ben Heywood Win International Alliance of ALS/MND Associations 2016 Humanitarian Award
DUBLIN—December 8, 2016—A decade after their work sparked a revolution in patient empowerment and patient-centered medicine, PatientsLikeMe co-founders Jamie and Ben Heywood were awarded the 2016 Humanitarian Award by the International Alliance of ALS/MND Associations. Inaugurated in 2000, the Humanitarian Award recognizes and encourages contributions to the fight against Amyotrophic Lateral Sclerosis/Motor Neurone Disease (ALS/MND) and is awarded to those… Continue reading PatientsLikeMe Co-Founders Jamie and Ben Heywood Win International Alliance of ALS/MND Associations 2016 Humanitarian Award
“Hope makes us strong.” Cathy opens up for National Family Caregivers Month
Are you a caregiver or do you know someone who cares for a loved one? For National Family Caregivers Month, we caught up with Cathy (Catrin), who became a caregiver for her husband after he was diagnosed with bulbar onset ALS in January of 2015. As she learns to manage the dual roles of wife… Continue reading “Hope makes us strong.” Cathy opens up for National Family Caregivers Month
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… Continue reading PatientsLikeMe Welcomes Next Patient Team of Advisors
“When the wind turns against you, adjust your sails” – Member Steve opens up about living with ALS
Say hello to Steve (sheronemus), a member of the ALS community who also struggles with depression. We recently caught up with him to learn about how his life has changed since his diagnosis, the importance of doing what you love and how he manages multiple conditions. Check out what he had to say about what… Continue reading “When the wind turns against you, adjust your sails” – Member Steve opens up about living with ALS
PatientsLikeMe Launches Virtual Trial for ALS Patients
Study With Major Academic Medical Center to Evaluate the Potential of the Soy Peptide Lunasin to Reverse ALS Symptoms DURHAM, N.C., October 25, 2016—PatientsLikeMe and The Duke ALS Clinic have just completed enrollment in a virtual trial designed to test whether Lunasin, a peptide found in soy and some cereal grains, is helpful or harmful… Continue reading PatientsLikeMe Launches Virtual Trial for ALS Patients