3 posts tagged “ALSTDI”

A new precision medicine program for ALS patients

Posted May 4th, 2016 by

Last month, we talked about precision medicine and what it could mean for psychiatry. What’s precision medicine again? It’s a relatively new way of preventing and treating illnesses that takes into consideration people’s genetic makeup, environment and lifestyle.1

Today — just in time for ALS Awareness Month — we’re digging deeper into how it can be used to treat ALS. Our partners at the ALS Therapy Development Institute (ALS TDI) run the world’s first and largest precision medicine program in ALS, and here’s what it’s all about…

How the program works

The goal of ALS TDI’s program is to identify subgroups of ALS and possible treatments for them using a patient’s personal data, genomics and iPS cell technology … and then test the most effective treatments in a clinical trial.2 Check out the graphic below for an overview of what program participants can expect (tap to make the image larger).

 

 

If you’re living with ALS, head over to the forum and tell us what you think about using precision medicine in ALS care — would you participate in a program like ALSTDI’s? Add your voice and let’s learn more, together.

 

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1 www.nih.gov/precisionmedicine

2http://www.alstdi.org/precision-medicine-program/


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!

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Jamie delivers keynote presentation at DIA 2014

Posted October 7th, 2014 by

Our co-founder, Jamie Heywood, recently traveled to San Diego to receive the Drug Information Association’s (DIA) 2014 President’s Award for Outstanding Achievement in World Health. With the award in his hand and speaking to everyone who was attending the event, he accepted it on behalf of the quarter million PatientsLikeMe members (this is for all of you!).

During the DIA’s 50th annual meeting, Jamie gave the keynote address, and he touched upon his personal journey in the world of healthcare and patient-reported data. He spoke about his brother, Stephen Heywood, who passed away from ALS in 2006, and how Stephen inspired the creation of the ALS Therapy Development Institute (ALSTDI) and PatientsLikeMe. Jamie also shared about “healthspan” and the potential that personal health data has to change the way we look at treatments and research. But that’s not all – watch the video below to hear everything Jamie said.

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