18 posts from December, 2015

Your data doing good: The Lithium study

Posted December 18th, 2015 by

During #24DaysofGiving this December, we’re highlighting all the good your health data donations are doing. And this time, we’re starting at the beginning. 

As you probably know already, PatientsLikeMe launched its first community in 2006 for people living with ALS, also known as Lou Gehrig’s disease. Two years later, we had an amazingly engaged and research-focused community who were willing to share data to change what the world knows about ALS. This neurodegenerative condition is fatal and takes away people’s ability to walk, speak, use their arms, and eventually breathe. This is exactly what happened to our founders’ brother, Stephen.

So, in 2008, when the results of an Italian clinical trial were published in a highly respected scientific journal saying that the use of lithium carbonate could slow the progression of ALS, we had a member community that was hungry to learn more. Spearheaded by two very involved members – a Brazilian ALS patient named Humberto and a caregiver in the US named Karen – we set out on a journey to collect and analyze thousands of patients’ real-world data to understand how lithium carbonate was working beyond the clinical trial setting. The result was unexpected and unmatched in the world of medicine.

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From our partners at One Mind: Zack Lystedt’s football story

Posted December 17th, 2015 by

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. In this campaign, they share Zackery Lystedt’s story:

In October 2006, 13-year-old middle school football player Zackery Lystedt collapsed from a traumatic brain injury (TBI) when he was allowed back into a game just 15 minutes after suffering a concussion. From the time of his injury, Zack spent the next three months in a coma, nine months before speaking his first word, 13 months before moving a leg or an arm, 20 months living on a feeding tube, and nearly three years before standing with assistance on his own two feet.

Zack and his family worked tirelessly to change the rules around concussion, and in May 2009, Washington State enacted the Zackery Lystedt Law, becoming the first state in the nation to enact a comprehensive youth sports concussion safety law. Today, all 50 states and the District of Columbia have followed suit by enacting strong concussion safety laws called “Return to Play” laws. This is the fastest growing public safety initiative to go into law in all 50 states. Nine years later, Zack continues daily therapies and is regularly asked to speak on the dangers of mismanaged concussions. We applaud Zack and his family for their tireless efforts to protect young athletes from returning to the game too soon.

With support from the Lystedt Family, One Mind is also working to protect athletes by advancing the research and supporting studies around concussions and traumatic brain injuries (TBIs). Although strides have been made in brain research, our understanding of the brain has a long way to go – some say brain research is where heart research was 50 years ago. One Mind is working with brain scientists across the US and around the world to find answers for concussions and other brain injuries and diseases by supporting researchers collaborating to come up with answers sooner.

Learn more about One Mind and the #TreatBrainsBetter campaign.

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