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
Tag: MND
ALS Blog: “Hope makes us strong.” – An interview with ALS caregiver Cathy
Meet 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 and caregiver, she has turned to the PatientsLikeMe community for help, encouragement and hope. We took time to connect with her recently and… Continue reading ALS Blog: “Hope makes us strong.” – An interview with ALS caregiver Cathy
“I try my best to make the most of each new day”– An interview with ALS member Brian
Brian (Dunric) is a former game developer and has been living with ALS since 1998. Unable to find a local ALS support group where he lives in Lodi, CA, he discovered PatientsLikeMe in 2012. In a recent interview, Brian opened up about dealing with the uncertainty of his condition the best way he knows how… Continue reading “I try my best to make the most of each new day”– An interview with ALS member Brian
Meet John from the PatientsLikeMe Team of Advisors
We’d like to introduce you to John, another member of your 2015-2016 PatientsLikeMe Team of Advisors. Shortly after being diagnosed with ALS in January 2014, John decided to retire from his 37-year career in IT. His new focus? Learning everything he possibly can about his condition — and plenty of fishing. Fueled by what he… Continue reading Meet John from the PatientsLikeMe Team of Advisors
“Do not give up, find a reason to keep going.” – An interview with ALS member Lee
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
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
“Perseverance, patience and acceptance” – PatientsLikeMe member Steve shares what it’s like to live with MND
Those three words describe how PatientsLikeMe member Steve says he has adapted to life with motor neuron disease (MND). He was diagnosed with MND (also known as ALS) in 2007, and technology has helped Steve navigate the challenges of living with ALS while raising three children. He’s also made a video about his journey, called… Continue reading “Perseverance, patience and acceptance” – PatientsLikeMe member Steve shares what it’s like to live with MND
Share and Compare: A PatientsLikeMe Year in Review (Part III – more R&D)
The research team is very proud of how our team has grown in 2010 and the impact we’ve made in the academic community. In 2010 alone, PatientsLikeMe and our work were mentioned in scientific literature more than 133 times. All of this is because of what you share with us. Yesterday, we highlighted some of… Continue reading Share and Compare: A PatientsLikeMe Year in Review (Part III – more R&D)
PatientsLikeMe @ The 20th International ALS/MND Symposium in Berlin
The 20th International Symposium on ALS/MND took place (December 8th-10th) in Berlin, Germany. This is the 4th ALS Symposium attended by PatientsLikeMe, and certainly the most exciting in terms of new findings. The annual symposium is a tremendous opportunity for researchers from around the world to meet and share new developments – it’s the big… Continue reading PatientsLikeMe @ The 20th International ALS/MND Symposium in Berlin
Charting the course of PLS and PMA
Primary Lateral Sclerosis (PLS) and Progressive Muscular Atrophy (PMA) are two rare variants of the disease ALS. Normally, ALS affects the upper motor neurons in the brain and spinal cord, as well as the lower motor neurons that send signals from the spinal cord directly to muscles. PLS and PMA are different because PLS only… Continue reading Charting the course of PLS and PMA