lou gehrig’s disease

Leaving a Legacy of Data at PatientsLikeMe

Recently, our ALS community mourned the loss of Persevering, a highly proactive three-star member who was known for his unfailing efforts to support fellow patients, record and share data, report website problems and recruit ALS clinical trial participants.  Offline, he was also a tireless advocate for ALS awareness and research, attending conferences and lobbying on Capitol Hill.  Persevering passed away on September 10, 2012, at the age of 42, and is deeply missed by both our members and our staff. While we are unable to recognize every member who passes away on our blog, we wanted to take this opportunity to highlight how our community responds to loss as well share what happens to a deceased patient’s profile data.  When our community managers are notified of a member’s death – typically by a family member, caregiver or another member who was close to the person – they add the date of death to the member’s profile. This automatically updates their icon nugget with a black band to show that the member has passed away. (See image below.) Also, our members often create a forum thread about the member, to which the tag “In Memory” is added by other members or …

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Spotlighted Blogger: ALS Patient Rachael of “Notes to Self”

Welcome to the third installment of our new blog series featuring patient bloggers. Last week, we introduced you to Parkinson’s blogger Steve, and today, we’d like you to meet Rachael, a three-star member who has been a part of PatientsLikeMe’s flagship ALS community since the very beginning. In fact, she joined PatientsLikeMe in May 2006, just two months after being diagnosed with this progressive neurological disorder (also known as Lou Gehrig’s disease). Her blog is called “Notes to Self,” and it’s a candid and charming journal of the full life she leads, despite her condition. 1.  What role does your blog play in your life? As the title suggests, my blog is [filled with] “Notes to Self.” I use it as an aide memoir and an excuse to be verbose as my voice fails me. It is useful to direct people who ask about events in my life when repetition of the story would be tiring. I also find that it helps me to work through my often complicated emotions in dealing with the disease and its incumbent challenges. 2.  Tell us about using an eye gaze system to write your blog posts and more. As I have blogged on …

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A Little More About Us: A Look Back at the Founding of PatientsLikeMe

“I got this call from my brother Stephen, and he said the news doesn’t look good. At that point, he’d been through enough processes to know what that meant – he had ALS. So I began this journey with my brother and my family…. We were thinking there had to be a way to make this about the patient. But it started like everyone else. You get that phone call, and your life changes.” – Jamie Heywood, Co-Founder Recently, we launched a new and improved About Us page that included a short video about our company history. Now, we’re pleased to unveil a longer, more in-depth video that allows you to hear our founding story from four PatientsLikeMe executives and learn what drew each of them to become a part of our groundbreaking concept. Tune in below to hear where it all started and why, five years later, we’re committed to continuing the journey we’re all on – as a company, as patients and as family members of those affected by disease. You can also watch this insightful piece (~15 minutes) in three smaller segments:  Chapter 1, Chapter 2 and Chapter 3.

Raise Your Awareness of ALS (Lou Gehrig’s Disease)

May is ALS Awareness Month. To help spread the word about this progressive neurodegenerative condition, which affects approximately five out of every 100,000 people worldwide, we wanted to tell you a little bit about our patients with ALS (amyotrophic lateral sclerosis). Due to our founders’ personal experience with this disease, ALS was the very first condition to have a home at PatientsLikeMe when we launched in 2006.  Five years later, our ALS members now represent the largest ALS patient population in the world, capturing 10% of all newly diagnosed patients in the U.S. Here are some quick facts about ALS, as reported by our members: What is PatientsLikeMe’s ALS membership like? As of today, we have 4,446 patient members with ALS. 59% of our ALS members are male, and 41% are female. What are the top treatments? Our ALS members report using over 1,500 treatments, including prescription drugs, medical devices, physical therapies, etc. The most widely used prescription drugs reported by our ALS members are Riluzole (Rilutek),  (Lioresal Oral) and Amitriptyline (Elavil). The top lifestyle modification reported by our ALS members is avoiding alcohol, while percutaneous endoscopic gastrostomy (PEG) is the number one procedure cited. The top three supplements reported by our …

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Announcing the PatientsLikeMe ALS Genetics Search Engine

This month marks the 3-year anniversary of our flagship ALS community.  While there have been so many exciting milestones we’ve reached in that time, we’re always looking at ways to bring new insight to this disease. Today, we’re announcing the launch of our Genetics Search Engine for people with ALS.  Imagine finding other patients just like you, down to the genetic level.  Patients in our ALS community can now do that.  (For patients who don’t see their genetic mutation right now, that’s alright.  They can be the first with that genetic mutation to join our community and share information about the disease.) What does sharing genetics mean for research?  By capturing data on familial ALS patients’ known genetics (such as SOD1 A4V, SOD1 D90A, and VAPB P56S), we can learn more about the cause and effects of every kind of ALS and better our chances of advancing research and finding new treatments. Our goal in launching the Genetics Search Engine (and other upgrades like it) is to help patients find others just like them and enhance our understanding of the phenotype of each genetic mutation (i.e., different causes of ALS have faster or slower disease progression). The Genetics Search Engine is …

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A new gene for ALS: What sharing your genetics could mean for research

In today’s issue of the journal Science two papers describe the discovery of a new gene for ALS (you can read the abstracts here and here). Around 90% of ALS cases are sporadic, i.e. we don’t know what causes them, but for 5-10% of patients the disease runs in their family (known as familial ALS, FALS). Until today, there was only one major causative gene that we knew about, called SOD1, which accounted for 20% of familial cases. Today’s new discovery of the gene FUS (also known as ALS6) accounts for an additional 3-5% of familial cases and was the result of an international collaboration between scientists in Boston, London, and Sydney. This is very exciting for research because the more we know about what causes ALS, the better our chances of finding an effective treatment through better understanding of the pathways involved in motor neuron degeneration. Here at PatientsLikeMe, we’ve recently upgraded our ALS platform to capture data on familial ALS patients’ known genetic mutations. The goal is to help familial ALS patients find another patient like them, and to enhance understanding of the phenotype of each mutation, e.g. if different types of mutation cause a faster or slower …

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ALS Symposium 2008: New features for ALS patients

This blog post is the second in a series from our attendance at the 19th International Symposium on ALS/MND in Birmingham UK in November 2008. When PatientsLikeMe attended the previous ALS/MND Symposium in Toronto Canada in December 2007, I was given a platform presentation to show the assembled clinicians, scientists and researchers what we had developed for patients with the condition. This year, as part of a session on the history of ALS/MND patients online, I was given the opportunity to show attendees some of the improvements we had made to the site since that time. * Percentile curves for patients with PLS – When I said that we had more than 100 patients with PLS registered on the site, there was a collective gasp from the audience. Our large sample has allowed us to show PLS patients how they compare with other PLS patients for the first time. (Available to PLS members of the ALS/MND community) * Geomapping – Patients on our system can see a map of the world and see registered users nearby using a Google Maps API developed by our resident geomapping whiz Steve Hammond. This allows patients in isolated areas, or even busy cities, to …

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ALS Symposium 2008: A history of ALS online

Back in November, Jamie Heywood and I attended the 19th International ALS/MND Symposium in Birmingham, UK.  As part of an ongoing series of blog posts reporting from that conference, I have put together a narrated slideshow which is an abridged version of a platform presentation I was asked to give at the conference about the past, present, and future of the internet for patients with ALS/MND. As you will see in the presentation, there has been a strong online presence in the ALS/MND world since the early 1990s. Over time, the proportion and representativeness of the patients participating has increased dramatically, to the point that we now have some 10% of the USA’s ALS/MND population registered on the site. Next up in our series…a blog post looking at some of our recent improvements to PatientsLikeMe for people living with ALS/MND.

Structuring and Presenting the Patients’ Perspective at AMIA

PatientsLikeMe members share health data on the site adding their own individual-level health experience to a repository of structured outcome data. The result? An unprecedented data set that informs medical conversation not only within the patient community but also with the larger scientific one. Earlier this fall, the venue for this conversation was the annual meeting of the American Medical Informatics Association (AMIA). Typically, AMIA is a forum for medical researchers to discuss clinical-facing informatics projects like electronic medical records, doctor decision-support systems, and standards. This year, the event agenda included its first-ever panel on patient collaboration, with PatientsLikeMe presenting on how our members use informatics systems to spearhead original research.I presented a paper co-authored with Michael Massagli chronicling the activity on the ALS site regarding the site-based evaluation of Lithium. Questions about the paper were enthusiastic and challenging as medical researchers contemplated the full implications of patients conducting research outside of the healthcare system. The most provocative comment came from Danny Sands of Cisco who introduced the possibility that while he saw the value of PatientsLikeMe, we may also be “polluting clinical trials” – when patients with rare diseases take experimental treatments before being enrolled in (his) randomized clinical …

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PatientsLikeMe Unleashes Real-World Treatment and Symptom Information to the Public for ALS and Multiple Sclerosis

PatientsLikeMe, the leading treatment and outcome sharing community for people with life-changing conditions, has released the most comprehensive real-world treatment and symptom dataset on ALS (Lou Gehrig’s Disease) and Multiple Sclerosis (MS). Previously, similar real-world information would have had to be mined and aggregated from proprietary sources such as hospital systems or insurance companies. Now, anyone can go to PatientsLikeMe.com and search for a particular treatment or symptom to find out the experience of over 2,300 patients. This unprecedented database includes medication dosage ranges, lengths of time on a treatment, reasons for discontinuation, symptom severity, and other key experience measures on over 1,300 treatments and 300 symptoms. Learn more….

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