6 posts tagged “ALS Awareness Month”

“I learned that life is precious.”

Posted May 23rd, 2016 by

Meet Jenna. She’s been part of the PatientsLikeMe Team since back in 2012 when she first started as an intern. And for Jenna, working at PatientsLikeMe is personal. Her father was diagnosed with ALS when she was just eight years old, and so, being part of PatientsLikeMe is especially meaningful for her.

For ALS Awareness Month this year, Jenna volunteered to talk on camera about how the condition impacted her childhood; sharing how a family banded together to care for a father, husband and friend.

“I learned that life is precious,” she says. “And I learned at an early age that it’s important to do what you love and do something that makes a difference.”

Hear her story!

Share this post on Twitter and help spread the word.

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.

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

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

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.

 Share this post on twitter and help spread the word for ALS Awareness Month



Being an Advocate for ALS

Posted June 7th, 2011 by

Last month, we had the opportunity to interview PatientsLikeMe member t1961, who attended ALS Advocacy Day, held May 8-10, 2011, in Washington, DC. What does it mean to advocate for your disease on Capitol Hill? How can you personally make a difference? Check out the interview below to learn why this ALS patient felt the need to get involved and “put a face on this monster.”

ALS Advocacy Day

1.  What is ALS Advocacy Day?

ALS Advocacy Day was a national conference with ALSA Chapters of the USA and with patients with ALS (PALS) and their families and caregivers (CALS). We met in Washington, DC, where they held several information sessions on topics from Medicare to Familial ALS (FALS) to Congress 101. Each PALS and CALS with their local ALSA Chapter met with their home state Congressmen and Congresswomen. The purpose was to ask for more funding for the National ALS Registry and the ALS Research Program (ALSRP) though the Department of Defense.

2.  Why did you decide to take part?

My voice is for all the other PALS, whose worlds’ have been turned upside down by ALS. Personally, I want a treatment and cure. I don’t want other young grandmothers not to be able to hold their grandbabies, like me. Or to be able to play Simon Says or Duck, Duck, Goose. I went to tell my story, the heartache, the pain this disease has cost my husband, daughters and grandchildren. To put a face to this monster!

3. We heard you met up with several other members of PatientsLikeMe at this event. What was that like?

Yes, I got to meet some PatientsLikeMe members, and it was wonderful. PatientsLikeMe is an extended family. We are all from all over the world, but we became brothers and sisters to each other. We understand what each others’ daily lives are like. We laugh, cry and mourn together. I know if I have a question, I’ll get an answer, and we have become very creative with how to do normal daily things.

4. You’re both active offline and online at PatientsLikeMe. How has PatientsLikeMe helped you with your ALS?

First of all, every new PALS I meet at MDA clinical checkups or support group meetings, I ask if they are on the PatientsLikeMe website. If not, I give them the site’s address and explain that it’s something that they need to get on. PatientsLikeMe knows more than the doctors, who slowly watch and take notes on us slowly weakening and dying. PatientsLikeMe PALS/CALS can tell you what medicines work best, what is the best power wheelchair for your lifestyle, how to remodel your bathroom, what it the best kind of handicap van and where to locate them. The list can go forever.

5. What are some of the things you would want to tell a newly diagnosed patient about ALS?

Enjoy your family and friends. Take it one day at a time. Get your affairs in order. It’s okay to cry and mourn for the things that you won’t to be able to do in the future but keep living now. And talk about ALS and its effects on you and your family. Educate the people around you about Lou Gehrig’s disease. Remember: research+ education = treatment. Funding + research + treatment = CURE!

6. What is something few people know about ALS ?

It’s not a painless disease. It knows no gender, age, race.

PatientsLikeMe member jdevita

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

Posted May 20th, 2011 by

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).

Click to watch a full segment on the Heywood family from the nightly news show Chronicle, which airs on WCVB-TV in Boston

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?

What are the top treatments?

What are the major symptoms?

What are ALS patients talking about?

Speaking of Lithium Carbonate, we are very proud of our patient-led research study on the drug that was published in the scientific journal Nature Biotechnology last month. The findings, which refuted a previous clinical trial, garnered a good deal of media coverage for not only showing the real-world effects of the drug (no impact on ALS disease progression was found) but also how patient-reported data can accelerate medical research.

Click to watch the full interview with PatientsLikeMe Co-Founder and Chairman Jamie Heywood, who discusses ALS research and the concept for PatientsLikeMe

Finally, to put a face on ALS, we’d like to share a current news story here in Massachusetts, where PatientsLikeMe is headquartered.  Former Massachusetts Governor Paul Cellucci talked about his ALS diagnosis for the first time this week on the nightly news show Chronicle.  We were honored to have been featured in the WCVB-TV piece, which included a segment on Stephen Heywood’s battle with ALS as well as an interview with PatientsLikeMe Co-Founder and Chairman Jamie Heywood.

Watch the full four-part piece (entitled “The Campaign of His Life”) to see how both Governor Cellucci and the Heywood family are fighting back against ALS.

An Interview with DannyD to Kick-Off ALS Awareness Month

Posted May 7th, 2010 by

It’s ALS Awareness Month!  Did you know there are more than 4,500 patients with ALS (PALS) in PatientsLikeMe’s flagship community?  We’ll be updating you all month on what is being learned by and from our PALS, so stay tuned.  To kick us off, here is an interview with one of our long-time, three-star members  – DannyD.  Read on to find out what he recently told our very own Amy Morton about living with hope, making resolutions, being impulsive, and learning from PatientsLikeMe.

* * *

2166 (Amy) What gives you hope?

(DannyD) People give me hope. I know there is an army of people and organizations out there working to cure ALS while continually finding ways to maintain quality of life until there is a cure. Even in these tough economic times, people are still giving of themselves, whether it is their time and/or money. I think in the last 10 years we’ve made more progress into understanding ALS than we’ve made in the previous 100+ years, and as my disease process is progressing very slowly, I’m optimistic that I will see a cure in my lifetime.

2166 (Amy) What are your resolutions for 2010?
44 (DannyD) I don’t usually make resolutions, because I think you can set yourself up for failure. But I do strive to be a better person, by being more patient, understanding and tolerant, which is most challenging for me. Historically, I think I’ve accomplished that but only in baby steps. I do try to learn something new every day and teach something to someone, and I will continue to do that in 2010.

2166 (Amy) What’s the most impulsive thing you’ve ever done?
44 (DannyD) I’m generally not very impulsive, so I would have to say in 1990 when I was living in New York and just prior to getting married.  I went to work on Friday for a 3-11 shift as a paramedic and was greeted by three of my closest friends, who hijacked me away to begin what would be a two-and-a-half-day bachelor party. They shackled an eight-pound bowling ball to my ankle for the entire weekend. They had made arrangements to have my shift covered, took me to dinner and then back to the volunteer firehouse for a huge party. The next morning we got on a chartered bus for a day in Atlantic City and gambling at the casinos on the boardwalk. It was a heck of a weekend.
2166 (Amy) What would you like to learn from PatientsLikeMe and its members this year?
44 (DannyD) I started as a beta tester here and have watched it grow into the largest online community of patients helping patients. With all the restrictions put in place by the HIPAA laws, this website has transcended the status quo and become a great tool in helping patients fight this disease and several others. Truth be told, for purely selfish reasons, I would like to learn this website is no longer necessary for the ALS community because the cure is here!
2166 (Amy) A beta tester?  Wow.  Well, thank you for sharing with us today and every day since you joined, DannyD!