7 posts tagged “ALS Therapy Development Institute”

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/


What can you do to challenge ALS in May?

Posted May 4th, 2015 by

It’s been 23 years since the U.S. Congress first recognized May as ALS Awareness Month in 1992, and while progress towards new treatments has been slower than we’ve all hoped,  a lot has still happened since then. In 1995, Riluzole, the first treatment to alter the course of ALS, was approved by the FDA. In the 2000s, familial ALS was linked to 10 percent of cases, and new genes and mutations continue to be discovered every year.1 In 2006, the first-of-its-kind PatientsLikeMe ALS community, was launched, and now numbers over 7,400 strong. And just two short years later, those community members helped prove that lithium carbonate, a drug thought to affect ALS progression, was actually ineffective.

This May, it’s time to spread awareness for the history of ALS and share everything we’ve learned to encourage new research that can lead to better treatments.

In the United States, 5,600 people are diagnosed with ALS each year,2 which means that well over 100,000 have started their ALS journey since 1992. And in 1998, Stephen Heywood, the brother of our co-founders Ben and Jamie, was also diagnosed. They immediately went to work trying to find new ways to slow Stephen’s progression, and after 6 years of trial and error, they built PatientsLikeMe in 2004. If you don’t know their family’s story, watch Jamie’s TED Talk on the big idea his brother inspired.

So how can you get involved in ALS awareness this May? Here’s what some organizations are doing:

If you’ve been diagnosed with ALS and are looking to connect with a welcoming group of others like you, join the PatientsLikeMe community. More than 7,000 members are sharing about their experiences and helping one another navigate their health journeys.

Don’t forget to keep an eye out for more ALS awareness posts on the blog in May.

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1 http://www.alsa.org/research/about-als-research/genetics-of-als.html

2 http://www.alsa.org/about-als/facts-you-should-know.html


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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Speaking up for hope during ALS Awareness Month

Posted April 28th, 2014 by

May is just a few days away, and we wanted to get a jump-start on spreading the word for Amyotrophic Lateral Sclerosis (ALS) Awareness Month. As many out there might know, PatientsLikeMe was founded on the life experiences of brothers Stephen, Ben and Jamie Heywood. In 1998, Stephen was diagnosed with ALS and his brothers went to work trying to find new ways to slow his progression. But their trial and error approach just wasn’t working, and so they set out to find a better way. And that’s how in 2004, PatientsLikeMe was created. If you don’t know the story, you can watch the feature documentary of the family’s journey, called “So Much So Fast.”

ALS is considered a rare condition, but it’s actually more common than you might think – in the United States, 5,600 people are diagnosed with ALS each year, and as many as 30,000 are living with the condition at any given time.1 ALS affects people of every race, gender and background, and there is no current cure.

Even before PatientsLikeMe, Jamie started the ALS Therapy Development Institute (ALS TDI), an independent research center that focuses on developing effective therapeutics that slow and stop ALS. Now, it’s the largest non-profit biotech solely focused on finding an effective therapy for ALS. And on May 3rd, “The Cure is Coming!” road race and awareness walk will be held in Lexington Center, MA, to help raise funds for ALS TDI. There’ll be a picnic lunch, cash prizes for the road race winners and live music. Last year, over $110,000 was raised for ALS TDI – if you’re in the neighborhood, join the race today.

Also, the ALS Association (ALSA) sponsors several events during May, and this year, you can:

Back in January, we shared a special ALS infographic on the blog – the PatientsLikeMe ALS community was the platform’s first community, and now, it’s more than 6,000 members strong. If you’ve been diagnosed with ALS, there’s a warm and welcoming community on PatientsLikeMe waiting for you to join in. Ask questions, get support and compare symptoms with others who get what you’re going through.

Keep an eye out for more ALS awareness posts on the blog in May, including an interview with one of our ALS members.

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1http://www.alsa.org/about-als/facts-you-should-know.html


Leaving a Legacy of Data at PatientsLikeMe

Posted October 30th, 2012 by

ALS member Persevering in front of the US Capitol, where he was participating in ALS Advocacy Day 2011.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.)

Persevering’s icon nugget – with the black band representing that he’s no longer with us after his three-year battle with ALS.

Also, our members often create a forum thread about the member, to which the tag “In Memory” is added by other members or the community manager so that it is searchable and “followable” using this tag. In these emotional threads, members acknowledge the deceased member’s contributions, reflect on the loss to the community and pay their respects.  Essentially, it’s a place for remembering a friend, telling stories, supporting one another, sharing funny memories and sending condolences to the family.

Each month, our community managers update our “In Memoriam” thread in the PatientsLikeMe forum with a list of members who have passed away during the previous month, and they include links to each profile. That way, members who haven’t logged on for a while or may have missed the news of someone’s passing can stay up-to-date.  Members can also choose to “follow” that thread if they wish to be notified whenever there is a new monthly update.

As for the profiles of members who have passed, they effectively create a legacy of data on our site, as their profile pages remain accessible to our members in perpetuity.  As a result, present and future members may continue to access these profiles to compare and learn from similar experiences.  Persevering’s detailed treatment, symptom and disease progression data, for example, will live on as a rich source of information and insight for other ALS patients.  What was his experience in the Phase II Study of NP001?  Read his comprehensive treatment history here.  What side effect led him to stop taking Riluzole?  Find out here.

Persevering’s Functional Rating Scale (FRS) data, showing his ALS progression over time.

So as you can see, Persevering is still helping others today, and we thank him for that.  We also want to recognize his contributions to our recent publication about NP001.  We have dedicated this new work to him as it was inspired by his keen desire as a “citizen scientist” to analyze and understand the impact of NP001 on his ALS progression.

As a result of these myriad achievements, Persevering will be posthumously awarded the Stephen Heywood Patients Today Award at the 8th Annual ALS Therapy Development Institute Leadership Summit on November 1st in Boston. Learn more about this beloved and influential ALS advocate by checking out the Facebook page created in his honor, entitled Persevering – You Are a Game Changer.


“A White Coat Affair”: A Wonderful Evening Celebrating ALS TDI

Posted November 4th, 2011 by

Last night, the PatientsLikeMe team came together for a great cause: the “White Coat Affair” gala benefit in support of the ALS Therapy Development Institute (ALS TDI).  Founded by PatientsLikeMe Co-Founder and Chairman Jamie Heywood in 1999, ALS TDI is the world’s most advanced research laboratory dedicated to ALS.

PatientsLikeMe Executives and Employees at ALS TDI's "A White Coat Affair"

Held the night before the institute’s 7th Annual Leadership Summit, the gala event included the presentation of the first-ever “ALS TDI Lou Gehrig Award” to US Congressman Michael Capuano as well as special recognition for ALS TDI Chairman of the Board Augie Nieto, who has raised more than $30 million for the institute since 2007.

Congratulations to ALS TDI on 12 years of cutting-edge research and leadership.