2 posts tagged “institute”

PatientsLikeMe Attends 4th Annual ALS TDI White Coat Affair

Posted February 19th, 2015 by

Back in November, a whole group from the PatientsLikeMe team came together for a great cause and attended the 4th annual A White Coat Affair gala benefiting the ALS Therapy Development Institute (ALS TDI). ALS TDI, founded by PatientsLikeMe Co-Founder and Chairman Jamie Heywood in 1999, is the number one nonprofit biotechnology organization dedicated to developing effective treatments for ALS. All proceeds from the event directly fund the research being conducted at ALS TDI.

The charity gala was held right after ALS TDI’s 10th Annual Leadership Summit, which featured in-depth scientific presentations from researchers and “thought leaders” on scientific developments, the PALS’ perspective and advice from pharma and biotech leaders within the ALS community. For the past 10 years, the Leadership Summit has brought together members of the ALS community for an intimate gathering to connect on the state of ALS research and progress being made toward a treatment.

The PatientsLikeMe team and other attendees traveled to the Westin Copley Place Hotel in Boston for A White Coat Affair and a special evening complete with a cocktail hour, dinner and live music. While there were some lighthearted moments (such as a cocktail called the Mad Scientist) there were also some very emotional moments that reminded everyone why we were there – to raise funds and awareness for ALS research.

Highlights of the dinner program this year included a presentation from Lynne Nieto, husband of Augie Nieto. Augie is Chairman of the Board of ALS TDI and Chief Inspirational Officer for Augie’s Quest, which has raised more than $44 million to fund research at ALS TDI. Anthony Carbajal also gave a powerful speech. Anthony was recently diagnosed with familial ALS at 26 years old and takes care of his mother, who is living with ALS as well. Check out his story if you haven’t already, or visit KissMyALS.org.

570 guests and 20 PALS attended A White Coat Affair for a memorable night committed to raising funds toward ALS TDI’s efforts to develop effective treatments for ALS. To view more photos taken during the evening, visit the event’s Facebook page – and congratulations to ALS TDI on 16 years of cutting-edge ALS research and leadership!

Share this post on Twitter and help spread the word for ALS.


Dispelling the myths of schizophrenia

Posted May 20th, 2014 by


May is all about mental health awareness, and we’re continuing the trend by recognizing Schizophrenia Awareness Week (May 19 – 26). Schizophrenia is a chronic neurological condition that affects people’s sensory perceptions and sense of being, and it’s time to dispel the myths about the condition.

Here are some myths and facts about schizophrenia from Northeast Ohio Medical University:1

Myth: Everyone who has schizophrenia knows that they have an illness.
Fact:  Many people who have schizophrenia wait months, sometimes years, and suffer needlessly before a proper diagnosis is made and treatment begins.

Myth: People with schizophrenia are dangerous.
Fact: Studies indicate that people receiving treatment for schizophrenia are no more dangerous than the rest of the population.

Myth: People with schizophrenia have split or multiple personalities.
Fact: Schizophrenia is not a split personality disorder in any way.

The National Institute of Mental Health (NIMH) states that schizophrenia can cause extreme paranoia, along with mental changes like hearing voices others cannot, feeling very agitated or talking without making sense.2 Schizophrenia affects men and women equally, and although it’s normally diagnosed in adults over the age of 45, it is also seen in children. There is no cure for the condition, but antipsychotic drugs are used to manage the symptoms of schizophrenia, and many PatientsLikeMe community members are donating data on their treatments. Check out the NIMH’s fact page on schizophrenia to learn more.

Over the next week, many organizations across the U.S. will be raising awareness for schizophrenia through different events. Here are a couple examples:

If you’ve been diagnosed, you’re not alone – hundreds of PatientsLikeMe members are living with schizophrenia, and they’re sharing their stories in the forum. Take a moment to connect with others who are experiencing schizophrenia in the same ways as you.

 Share this post on twitter and help spread the word for Schizophrenia Awareness Week.


1 http://www.neomed.edu/academics/bestcenter/helpendstigma/myths-and-facts-about-schizophrenia

2 http://www.nimh.nih.gov/health/topics/schizophrenia/index.shtml