175 posts in the category “ALS”

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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“The human spirit is more resilient than we think” – PatientsLikeMe member mmsan66 shares her journey with ALS

Posted January 29th, 2015 by

PatientsLikeMe member mmsan66 was diagnosed with ALS back in 2008, but she’s been fortunate to experience an unusually slow progression, which currently affects only her legs. As a college professor, financial planner and ALS advocate, she raises awareness through her work with the Massachusetts Chapter of the ALS Association. She even finds time to visit places like the Grand Canyon, and she shared all about her life in a PatientsLikeMe interview. Read below to learn about her personal journey. 

What was your diagnosis experience like? What were some of your initial symptoms?

I was diagnosed in 2008 at the age of 66 but, looking back, had definitely exhibited symptoms in 2007 or earlier. I had retired a few years prior, after a long career in Human Resource Management that included positions in the fields of health care, the Federal government, higher education (Northeastern University), and high technology (the former Digital Equipment Corporation).  But, rather than slow down and enjoy retirement, I started a second career in tax and financial planning. I became an IRS Enrolled Agent (EA), earned a Certificate in Financial Planning, and obtained my securities and insurance licenses.  I started my own business as a tax and financial advisor (Ames Hill Tax Services) and also began teaching undergraduate courses in Finance, Accounting, and Investments as an Adjunct Instructor at several local colleges and universities.

I definitely noticed a change in 2007, when I experienced a number of falls (for no apparent reason), culminating in a fall while on vacation in Florida in which I fractured my left wrist. Upon returning home, I scheduled appointments with several specialists to have my legs checked out and, after a series of neurological tests, received a diagnosis of ALS at the Lahey Clinic in July of 2008. I wasn’t completely stunned, as I had done a lot of internet research on diseases with symptoms similar to mine, but had gradually eliminated them one-by-one as each test result came back negative. However, like all PALS, I was hoping against hope that my suspicions would prove false. The one thing that kept going through my mind in the days following my diagnosis was that my life—— as I knew it—– would soon be over.

How has your ALS progressed over the past few years? 

In 2009, after learning that the average life span of a PALS was 3-5 years after diagnosis, my husband and I decided to sell our home of 36 years rather than modify it. Fortunately, they were in the process of building a luxury apartment complex on a hill in town, and we were able to move into a brand new handicapped-accessible apartment, complete with roll-in shower, and overlooking a pond complete with wildlife.

By 2010 I was no longer able to walk at all, and had to rely solely on a power/ manual wheelchair, as well as a scooter. Although confined to a wheelchair, I still maintain my active tax practice, preparing individual, corporate, and trust tax returns as well as representing my clients at IRS audits. When I realized it would be too difficult to travel to and from the various campuses at which I taught, I applied and was hired as an online instructor by the University of Phoenix, where I’ve been teaching Personal Financial Planning since 2010. At this point in time, after living with the disease for 8 years, still only my legs are affected. Thankfully, I still maintain my upper body strength, and my ability to speak, swallow, breathe, etc. remains completely normal. Somehow, I can’t help but feel that this slow progression might be due in part to the upbeat, positive outlook I continually strive to maintain, and the fact that I keep very busy with my family, clients, students, attending online CPE seminars (to maintain my professional licenses), and participating in ALS fundraising walks.

We read you like to travel – what are some things you’ve done to make traveling easier?

We’ve done some travelling since I’ve been unable to walk, but nothing extensive in the last couple of years. Our last long-distance trip was to Las Vegas, the Grand Canyon and several other National Parks such as Bryce and Zion. At the time, however, I was still able to transfer with my arms from my wheelchair into the passenger seat of our van. Now, since my legs are completely useless, a handicapped van is a necessity.  We will be going to Austin, Texas in October for a niece’s wedding. We’ve found travelling is a lot easier if you call ahead to lay everything on with the airlines. Reserving a wheelchair or a power chair at each destination makes things a lot easier. And, it’s of the utmost importance when making hotel reservations to specify a “wheelchair accessible” room, not just one that’s “handicapped accessible” (a motel that has a roll-in shower is the best!).  Also, contacting local ALS organizations in the areas you plan to visit well in advance can be very beneficial. They can direct you to rental agencies or, better yet, lend you the mobility equipment you will need while you’re there.

Can you tell us a little about your work and advocacy with the Massachusetts Chapter of the ALS Association?

A few years ago, I decided to become involved in ALS Advocacy with the Massachusetts Chapter of the ALS Association. I was invited to speak to groups of scientists at Biogen Idec in Cambridge, MA on the topic of living with ALS, and was interviewed by the Boston Globe and WBUR radio when Biogen discontinued the Dexpramipexole trials. I also attended the NEALS Consortium’s first Clinical Research Learning Institute held in Clearwater, FL in October 2011. There I was fortunate to personally meet many fellow PALS from around the US, as well as prominent researchers and clinicians engaged in the fight against ALS. (I also had the pleasure of meeting Emma Willey from PatientsLikeMe.)

In addition, I have spoken to groups at various other fundraising events sponsored by organizations such as ALSA, the ALS Therapy Development Institute (ALSTDI), etc. and have represented these organizations at ALS Awareness events at Fenway Park. Because of my visibility as a PALS, I was elected to the Board of Directors of the ALS Association’s Mass chapter, and currently serve in the capacity of Secretary. 

What have you learned about yourself that has surprised you and/or your loved ones? 

I think the first and foremost thing I learned, is that the human spirit is more resilient than we think. I would never have imagined that I could be diagnosed with such a terminal disease, and still continue on with my life as best I could, finding pleasure in simple daily activities. We had travelled extensively around the world in the early years of our 47-year marriage (lived in Hong Kong for 2 years) and planned to travel internationally once again once we retired and our daughter embarked on a career of her own. Now, I appreciate just being able to get into our handicapped van and take local day trips with my husband. Never mind viewing the Taj Mahal by moonlight, now an excursion to the grocery store or taking in a local college hockey game is a welcome diversion and takes some planning.

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Open funding for open science to accelerate ALS research: An interview with Prize4Life CEO Shay Rishoni

Posted January 6th, 2015 by

Just about a year ago, we teamed up with Sage Bionetworks and TED Fellow Dr. Max Little for an ongoing Parkinson’s disease (PD) project called the Patient Voice Analysis (PVA).

 

The big idea: combine data from two sources – phone-based voice recordings and patient reported data from PatientsLikeMe’s Parkinson’s Disease Rating Scale (PDRS). Then, make the de-identified data sets available to the broader research community on Sage Bionetworks’ cloud-based computational research platform (http://www.synapse.org) to develop new tools to track PD disease progression.

We were overwhelmed by the response from the PatientsLikeMe PD community. More than 650 members provided 851 voice samples, and 779 of those were matched to the PDRS symptom data entered.

 

What’s next for open science?

Sage Bionetworks is working with the distributed DREAM community and ALS non-profit Prize4Life on another open science challenge alongside called the ALS Stratification DREAM Challenge. How does it all fit together?

The “Fund the Prize” campaign is the first of its kind effort to make the path for accelerating drug development completely open – the patient data is open access, the research is open, global and collaborative, and the funding is crowd-based.

The ALS Stratification Challenge, opening in Spring 2015, will be a worldwide cloud-based competition designed to spur the development of quantitative solutions that can identify which ALS patients’ disease will progress rapidly and which will progress more slowly. Prize4Life provides the largest ALS clinical trials database in the world. Sage Bionetworks and DREAM have created a synergistic competition concept and cloud-based computing platform that includes forums, webinars and a “leaderboard” that shows whose model is working best.

The individual or team with the best solution wins the prize – a $37,000 donation that the Challenge is asking everyone to help raise through the INDIEGOGO “Fund The Prize” campaign. The prize will help incentivize innovators from around the world to take part, and 100% of every donation goes towards the prize.

Helping spread the word

Prize4Life CEO Shay Rishoni is a 48 year-old dad of two boys and was an Ironman triathlete before being diagnosed with ALS in August 2011. Within three months he saw his ability to use his arms weaken considerably while no other body parts were affected. Less than two years later he was completely paralyzed and breathing with a ventilator. We caught up with him to help spread the word and learn more about the Challenge, why he thinks the prize is so important and why he works so hard.

Can you tell us a little about your own journey with ALS?

I was diagnosed with ALS 3.5 years ago, when I was 45 years old, a CEO of a company, an Ironman, a pilot, a military colonel (in res.) and a family man with two young sons. Given all of that, receiving a diagnosis of ALS was of course not what I had planned! But I knew that like everything else in life, I will make sure to stay true to myself and my values nonetheless- to stay positive, active and entrepreneurial. That meant in my public life to fight for the development of treatments- and a cure!- for ALS, for current patients like me, but mostly for future patients. In my private life, as a husband, as a friend and as a father to fight to feel and know that Life is Good, and winning is a way of life. Although by now I am fully paralyzed, I believe that as long as I dream up plans and then work to make them happen, I am invincible.

You can see more of me explaining it in this video of my TED talk.

How did you become involved with Prize4Life and the ALS Stratification Dream Challenge?

I first learned about Prize4Life from its founder, Avi Kremer, who is also an ALS patient. Avi was diagnosed with ALS 10 years ago, as a 29 years old Harvard Business school student striving to make finding a cure for ALS a viable business. He was the recipient of the 2011 Israeli Prime minister award for innovation and entrepreneurship in the non-profit sector. I was inspired by his strength, courage and sophistication, and with Prize4Life model and important work and I knew that this is a framework with which I will do important meaningful things for ALS research, and I become the CEO in 2013.

One such important thing is the ALS Stratification Dream challenge. I think it’s a unique and highly innovative initiative. From a patient perspective it addresses a critical question- How can patients with a rare disease create meaningful solutions for their own illness? And the answer is by engaging as many stakeholders as possible. The “Fund the Prize” campaign is the first of its kind effort to make the path for accelerating drug development completely open- the patient data is open access, the research is open, global and collaborative, and the funding is crowd-based. It builds on Prize4Life’s database of ALS patients- the largest ALS clinical trials database in the world. Sage Bionetworks and DREAM, our collaborators, have created a synergistic competition concept and cloud-based computing platform to allow a planetary republic to use the data. Together we will get computational solutions that will tell us why patients are so diverse- from Lou Gehrig’s succumbing to the disease within two years to Stephen Hawking’s 50 years odyssey with ALS. The Challenge, opening in Spring, 2015, will be a worldwide cloud-based competition designed to spur the development of computer algorithms that effectively predict which ALS patients will experience rapid disease progression and which patients will live longer.

Why do you think the prize model is so important?

Prize4Life’s prize model is inspired by similar programs such as X-prize for space travel, demonstrated to foster meaningful research. These programs allow bringing awareness and new minds into a field and generate measurable results for well-defined goals. Prize4Life wants to bring all these benefits to ALS- awareness, new minds and measurable, highly needed, results.

Prize4Life aspires to span broad fields of innovation for their importance for ALS: we gave a $1M prize for a medical device that serves as a biomarker for ALS, another prize for developing algorithms that can predict disease progression and we are running a prize for a druggable cure. We believe that biologists, chemists, engineers, clinicians, software developers and all citizen scientists can bring a meaningful change in ALS.

Prize4Life and DREAM have already demonstrated the power of open Challenges to advance ALS disease research. The first ALS Challenge, conducted in 2012 when Prize4Life’s open ALS patient database contained data from about 1,000 patients, leveraged insights from over 1,000 solvers from 63 countries to identify novel methods that have the potential to reduce the costs of ALS drug development by millions of dollars. The winning approaches are now being used in the development of several ALS treatments, and are described in a recent article in Nature Biotechnology (here is coverage by Science news).

Why do you work so hard?

Because I have a lot to accomplish. (“If not me than who? If not now than when?”) ALS is still an orphan disease, still is relatively unknown, and we still see tremendous potential to realize- computer scientists can create solutions for better treatments and care, engineers can create better assistive technology, biologists can create better drugs… I believe everyone can be part of the victory over ALS.

What’s one thing about ALS that you think everyone should know?

That we, the ALS patients, even when we can no longer speak, still have a voice. That we still have big dreams and still work to make them happen, and if enough people will work together, we will win the fight over ALS.

…and that ALS patients can love and be loved.

How do you see open science evolving in the future?

I think open science will only become more important in fostering innovative research ideas from diverse communities. It will allow everyone to be part of the solutions, and that means many more solutions!

Where can someone make a donation to help fund the prize?

“Fund the Prize- Solving ALS Together” is a crowdfunding campaign (running now on Indiegogo.com) and intended to provide the prize money for the Challenge and thereby to bring together renowned scientists worldwide and drive innovation. The crowdfunding will run until January 22, 2015.

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2014 recap – a year of sharing in the PatientsLikeMe community

Posted December 23rd, 2014 by

Another year has come and gone here at PatientsLikeMe, and as we started to look back at who’s shared their experiences, we were quite simply amazed. More than 30 members living with 9 different conditions opened up for a blog interview in 2014. But that’s just the start. Others have shared about their health journeys in short videos and even posted about their favorite food recipes.

A heartfelt thanks to everyone who shared their experiences this year – the PatientsLikeMe community is continuing to change healthcare for good, and together, we can help each other live better as we move into 2015.

Team of Advisors
In September, we announced the first-ever PatientsLikeMe Team of Advisors, a group of 14 members that will work with us this year on research-related initiatives. They’ve been giving regular feedback about how PatientsLikeMe research can be even more helpful, including creating a “guide” that highlights new standards for researchers to better engage with patients. We introduced everyone to three so far, and look forward to highlighting the rest of team in 2015.

  • Meet Becky – Becky is a former family nurse practitioner, and she’s a medically retired flight nurse who is living with epilepsy and three years out of treatment for breast cancer.
  • Meet Lisa – Lisa was diagnosed with Parkinson’s disease (PD) in 2008, and just recently stopped working as a full-time executive due to non-motor PD symptoms like loss of function, mental fatigue and daytime insomnolence. Her daughter was just married in June.
  • Meet Dana – Dana is a poet and screenplay writer living in New Jersey and a very active member of the mental health and behavior forum. She’s living with bipolar II, and she’s very passionate about fighting the stigma of mental illness.

The Patient Voice
Five members shared about their health journeys in short video vignettes.

  • Garth – After Garth was diagnosed with cancer, he made a promise to his daughter Emma: he would write 826 napkin notes so she had one each day in her lunch until she graduated high school.
  • Letitia – has been experiencing seizures since she was ten years old, and she turned to others living with epilepsy on PatientsLikeMe.
  • Bryan – Bryan passed away earlier in 2014, but his memory lives on through the data he shared about idiopathic pulmonary fibrosis. He was also an inaugural member of the Team of Advisors.
  • Becca – Becca shared her experiences with fibromyalgia and how she appreciates her support on PatientsLikeMe.
  • Ed – Ed spoke about his experiences with Parkinson’s disease and why he thinks it’s all a group effort.

Patient interviews
More than 30 members living with 9 different conditions shared their stories in blog interviews.

Members living with PTSD:

  • David Jurado spoke in a Veteran’s podcast about returning home and life after serving
  • Lucas shared about recurring nightmares, insomnia and quitting alcohol
  • Jess talked about living with TBI and her invisible symptoms
  • Jennifer shared about coping with triggers and leaning on her PatientsLikeMe community

Member living with Bipolar:

  • Eleanor wrote a three-part series about her life with Bipolar II – part 1, part 2, part 3

Members living with MS:

  • Fred takes you on a visual journey through his daily life with MS
  • Anna shared about the benefits of a motorized scooter, and a personal poem
  • Ajcoia, Special1, and CKBeagle shared how they raise awareness through PatientsLikeMeInMotion™
  • Nola and Gary spoke in a Podcast on how a PatientsLikeMe connection led to a new bathroom
  • Tam takes you into a day with the private, invisible pain of MS
  • Debbie shared what it’s like to be a mom and blogger living with MS
  • Shep spoke about keeping his sense of humor through his journey with MS
  • Kim shared about her fundraising efforts through PatientsLikeMeInMotion™
  • Jazz1982 shared how she eliminates the stigma surrounding MS
  • Starla talked about MS awareness and the simple pleasure of riding a motorcycle

Members living with Idiopathic pulmonary fibrosis:

Members living with Parkinson’s disease:

  • Dropsies shared about her frustrating Parkinson’s diagnosis experience and how diabetes might impact her future eating habits

Members living with ALS:

  • Steve shared the story behind his film, “My Motor Neuron Disease Made Easier”
  • Steven shared how technology allows him to participate in many events
  • Steve shared about creating the Steve Saling ALS residence and dealing with paramedics
  • Steve told why he participated in the Ice Bucket Challenge
  • Dee revealed her tough decision to insert a feeding tube
  • John shared about his cross-country road trip with his dog, Molly

Members living with lung cancer:

  • Vickie shared about her reaction to getting diagnosed, the anxiety-filled months leading up to surgery and what recovery was like post-operation
  • Phil shared the reaction she had after her blunt diagnosis, her treatment options and her son’s new tattoo

Members living with multiple myeloma:

  • AbeSapien shared about his diagnosis experience with myeloma, the economic effects of his condition and his passion for horseback riding

Caregiver for a son living with AKU:

  • Alycia and Nate shared Alycia’s role and philosophy as caregiver to young Nate, who is living with AKU

Food for Thought
Many members shared their recipes and diet-related advice on the forums in 2014.

  • April – first edition, and what you’re making for dinner
  • May – nutrition questions and the primal blueprint
  • June – getting sleepy after steak and managing diet
  • July – chocolate edition
  • August – losing weight and subbing carbs
  • September – fall weather and autumn recipes
  • Dropsies – shared her special diabetes recipes for Diabetes Awareness Month

Patients as Partners
More than 6,000 members answered questions about their health and gave feedback on the PatientsLikeMe Open Research Exchange (ORE) platform. ORE gives patients the chance to not only check an answer box, but also share their opinion about each question in a researcher’s health measure. It’s all about collaborating with patients as partners to create the most effective tools for measuring disease.

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“Perseverance, patience and acceptance” – PatientsLikeMe member Steve shares what it’s like to live with MND

Posted November 14th, 2014 by

Those three words describe how PatientsLikeMe member Steve says he has adapted to life with motor neuron disease (MND). He was diagnosed with MND (also known as ALS) in 2007, and technology has helped Steve navigate the challenges of living with ALS while raising three children. He’s also made a video about his journey, called “Motor Neuron Disease Made Easier.” Steve spoke with us about the decisions that come with a MND diagnosis, the inspiration for his film and “how adaptable one can be in the face of adversity.” Read more about Steve’s story below and head to his blog to watch his film.

Looking back over the last 7 years since your diagnosis with ALS/MND, is there anything you’d like to have known sooner that has helped you along your journey?

I think I was fairly pragmatic about researching the condition from the outset, so there haven’t been many surprises apart from the fact that I am still here 7 years later (and I just realized it’s actually 7 years to the hour as I write). One of the difficulties with the disease is the uncertainty of the rate or nature of its progression. There is so much equipment, mostly hideously expensive, that you will need if you want to mitigate the effects of the disease – wheelchairs, hoists, adapted vehicles, communication aids, modifications to your home, the list goes on. But if you don’t know how long, for instance, you will be able to use a standing hoist, you can’t assess whether it’s worth spending the £2000 (about $3,000USD) on one. I know there’s a degree of uncertainty with the prognosis of many illnesses but I can’t think of another which comes close to the complexity of MND.

You’ve documented your experiences in your film “My Motor Neuron Disease Made Easier” – can you share a little about your inspiration for the project?

The thought of having MND without the internet is terrifying. The amount of information available regarding equipment and solutions to our multitude of challenges is staggering. However there aren’t many websites, which bring everything together. And many have information without presenting it in a real world context. So I thought that a video demonstrating most of the equipment I use would be a simple and quick way for fellow sufferers to see what’s available, but more importantly seeing it being used. Furthermore, I have realized that for many issues there simply isn’t an off the shelf solution. And in my experience many of the healthcare professionals just aren’t very creative, so I wanted to share my ideas like the chin support, heel pressure reliever and hoisting techniques to others. Having made the video, the filmmaker, Bernard, wanted to expand the idea to how MND impacts on a family. Then finally I wanted a sixty seconds version, which could be potentially used as a hard-hitting awareness campaign. The 3000-word narrative took several days to type using eye movements, but I am proud of the results.

How has technology helped you cope with the impact of ALS/MND? Is there anything you can recommend for PALS who might not be as comfortable with technology?

Technology has undoubtedly made coping with the disease far easier. Having had over 20 years experience in IT, I appreciate that I am better equipped than most to adapt to new technology. But you really don’t need any technical ability to use an eyegaze system for communication purposes, which is the most important benefit it offers. Actually, initially I only used it for this purpose. It was only after I got more confident with eye control that I ventured out of the easy environment of The Grid 2 software and started using Windows directly. I am now able to do anything anyone else could do with a computer. It also allows me to participate with family life as I am able to control all the computers and network devices in the house, which means I can sort all the problems out. I am even in the process of buying a house using my eyes.

I arranged all the viewings, negotiated the price, organized quotes for adaptations, dealt with solicitors, scanned necessary documents, bought hoists and other equipment on Ebay, arranged dropped kerbs for wheelchair access with the council and will hopefully move before Christmas. The only thing my wife had to do was choose the sofa! So almost anything is still possible.

Your blog is testament to your incredibly busy family life! Being a father of three boys, what impact has ALS/MND had on your approach to parenting and family life?

I have to say that the impact of MND on my abilities as a father has been the hardest thing about this disease. My triplet sons were 6 years old when I was diagnosed and I was confined to a wheelchair by the time they were 8, and when they were 9 I could no longer talk to them. They are now nearly 14 and I am grateful that I am still here but we have missed out on so much, both physically and through communication.

The most obvious impact are the physical restrictions. Almost every activity that a parent enjoys with their kids has been denied to me, from kicking a ball around in a park to giving them a hug. But maybe a more important loss is that of communication.

Eyegaze is undeniably an incredible means of communication but it’s certainly not conducive to flowing conversations. Ten-year-old boys aren’t very interested in waiting around while you laboriously construct a sentence, especially if they think it’s finally going to read “no xbox for a week”! Trying to teach something using eyegaze or trying to discipline using eyegaze is at best frustrating and ineffective respectively. That’s not to say I don’t try but these are two of the most important roles of a parent, which for me have been severely compromised. However I am still able to contribute in other ways. Being able to control all the computers in the house means I can help out with IT related stuff. I have setup Minecraft servers for them and helped install mods, I have installed and monitored parental control software and setup backup facilities and  I have fixed virus problems.

When I could still drive my wheelchair independently and didn’t require a full time carer, we were still able to go out to places as a family regularly. But as the logistics of getting out got more complex, the family activities decreased, although this is equally contributable to the troglodyte tendencies of teenage boys.

What has been the most unexpected thing you have learned during your journey with ALS/MND? 

I guess it would be how adaptable one can be in the face of adversity. In one of my videos I mention remembering when I learnt about Stephen Hawking and thinking how can anyone live like that. It seemed so horrific. But I am living like that, and whilst I disagree with some PALS who say there are positive aspects to our situation, you do adapt to it if you develop these three key attributes – perseverance, patience and most importantly, ACCEPTANCE. I won’t say these are responsible for my longevity (that’s just down to good fortune), but they have made the last seven years bearable.

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The Theory of Everything

Posted November 6th, 2014 by

Between the Ice Bucket Challenge and movies like “You’re Not You” (about a classical pianist who is diagnosed with ALS), there has been a ton of awareness going on for ALS, with many efforts focused on the personal stories of people living with the neurological condition. And this month, ALS is being spotlighted again in a biographical movie coming out very soon.

“The Theory of Everything” is about the life of renowned physicist Stephen Hawking, who has been living with ALS since the 1960s. Despite being given a grim diagnosis, he defied all odds and became one of the leading experts on theoretical physics and cosmology. Stephen Hawking’s story reminds us of the reality of ALS, but is also an inspiration to all who are living with motor neuron disease.

The movie premieres on November 7th in the U.S. – check out the trailer below.

 

As many out there might already now, movies like “You’re Not You” and “The Theory of Everything” hit close to home for the PatientsLikeMe family. In 1998, Stephen Heywood, the brother of our co-founders Ben and Jamie, was diagnosed with ALS. Their experiences – as a patient, as caregivers, and as a family led to the beginning of the online community patientslikeme.com.

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You’re Not You

Posted October 10th, 2014 by

There’s a greater sense of awareness around ALS lately. The IceBucketChallenge really shined a spotlight on a condition that many have heard of, but maybe not that many really understand. (If you missed it, see everyone here at PatientsLikeMe taking on the challenge, and what Steve, an ALS community member, thinks about it.

So it seems fitting that today there’s a new film coming out about what life with ALS is like. It’s called You’re Not You, and is based on the novel by Michelle Wildgen. Hilary Swank plays a successful classical pianist diagnosed with ALS. Emmy Rossum is also in the film as Bec, a directionless and brash young woman who becomes Kate’s full-time caregiver. This unlikely pair forms an intimate friendship and life-changing bond inspiring each other to live life to the fullest, while being brought together by the most challenging of circumstances. Through their unwavering support for one another, both women are moved to let go of who they were and discover who they are truly meant to be.

 

A special shout out and thank you to Hilary Swank, Emmy Rossum and Josh Duhamel for taking on the IceBucketChallenge, too!

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“Bang for the buck.” PatientsLikeMe member Steve shares about his experiences with ALS and the IceBucketChallenge

Posted September 19th, 2014 by

Ice + water + video camera = a viral ALS awareness campaign that has spread over social media and the news like wildfire. Millions of dollars has been raised for ALS research while more and more, people are learning about this neurological condition. Recently, PatientsLikeMe member Steve (who has been living with ALS since 2009) took on the challenge, and we caught up with him to find out why. Steve shared about his own diagnosis experience, what he thinks about the ALS community on PatientsLikeMe and what he hopes to see come out of the IceBucketChallenge. Don’t forget to follow Steve on his own blog, too. He calls it Bachblog. 

Can you tell us a little about yourself and your diagnosis with ALS?

I first noticed an odd cramping in my left hand sometime during the summer of 2009 when I was 49 years old. That fall, I realized I no longer had the strength to use fingernail clippers with my left hand. At the time, I was playing pickup basketball two or three days a week. I began to notice that after one hour of basketball I was “wiped out” and that I was having difficulty taking longer shots.

In January 2010 I saw a doctor for a sports hernia related to basketball. At my wife’s insistence, I brought up the cramping in my hand. He took one look at me (I was shirtless) and noted that I had fairly significant atrophy of the left arm. He referred me for an EMG, which I had a few days later.

Within a couple of months I got my neurologist to reluctantly admit that she believed I probably had ALS. She referred me to the University of Minnesota ALS clinic and, about a year later in February of 2011, I was given a definitive diagnosis.

Because I am a U.S. Navy veteran and the VA treats ALS as a “presumed service-related condition,” I am very well taken care of by the government. I am very fortunate in this respect and I wish all PALs had a similar level of support.

I retired in August 2011 as a computer programmer/analyst and UNIX systems administrator. My wife and I (with, at times, other members of my family including two daughters) have traveled quite a bit since my diagnosis: Hawaii, Belize, the Dominican Republic, Costa Rica and a Baltic cruise. I feel fortunate to have enjoyed years of relatively good health. However, I have declined to the point where any significant future travel would be very difficult.

Closer to home, I continue to enjoy family, reading, writing, online and (occasionally, with help) club and tournament Scrabble, trivia competitions, birding, and the Minnesota Timberwolves and Lynx. In the past two years I have created crossword puzzles that I have shared on my blog. I have been very happy to walk both of my daughters “down the aisle” in the past year and to welcome two great guys to our family.

You called the IceBucketChallenge a “seemingly ridiculous internet meme” in your video. Why did you decide to take on the challenge?

At first I thought that it was a curious way to spread ALS awareness and not much more. Many of the videos I had seen barely mentioned ALS and few included appeals for donations. But that soon changed, and I began to read of the astounding amount of money being raised.

My team had raised around $7000 in two previous ALSA walks, but I was not planning to participate this year for a variety of reasons. I decided that I would use the ALSIceBucketChallenge to make a contribution this year.

There are a bunch of ALS organizations people can donate to. Why did you choose to call out ALS TDI in your video?

I believe that the ALSA, while not perfect, does a lot of good work on behalf of our community. But I know that only about 27 percent of money donated to the organization is dedicated to research. There are justifiable reasons for this figure, but in the spirit of this challenge I wanted to raise money specifically for research. I have been very impressed by the work and commitment of ALS TDI. I believe they offer a lot of “bang for the buck” and that their commitment to openly sharing what they learn is absolutely essential to the overall effort of finding a cure for ALS.

You’ve been part of the PatientsLikeMe community for more than 3 years! How has connecting and sharing with others living with ALS helped you?

I cannot begin to enumerate all that I have learned from the site. The experiences of PALs who have lived with this disease for longer than I have – and, sadly, those who have died – provide such a wealth of experience and advice. Every patient has a different experience with this disease, but there is nothing I have gone through or will go through that someone else has not faced. PatientsLikeMe has been and will continue to be a valuable resource as I struggle to meet each new challenge.

It looks like you update your Functional Rating Scale on PatientsLikeMe a lot. Why do you donate your health data? What does donating your health data mean to you and to research?

I try to update my FRS every time I have an appointment and am evaluated on the scale by healthcare professionals. If I had to do this over, I might have chosen to do it consistently every month.

During my participation in the dexpramipexole drug trial, my FRS scores should have been particularly helpful for researchers and PALS interested in the drug. I continue to contribute my numbers as I do not know how and when an aggregate comparison of participants’ scores may be useful.

We’re all working to find a cure for ALS, but what research advancements do you hope to see in the short term?

I believe, as do such brilliant PALs and advocates as Steve Saling, Steve Gleason and Eric Valor, that until a cure or effective treatments for the disease are found, technology IS the cure. I hope to see continuing refinements of the high-tech solutions to many of the challenges presented by this disease.

Support for research into assistive technologies and for sophisticated but expensive ALS residences is important.

As more and more people learn about ALS through the IceBucketChallenge, what’s something you think they might not understand about the condition that you’d like to share?

I know that PALs who have lost the ability to communicate or who communicate with much difficulty are often assumed to be somehow compromised mentally. They are talked down to or assumed to be deaf as well as mute. In most cases, nothing could be further from the truth. I have not experienced much of this yet, but the assumption or even the appearance of the assumption that we are unable to think, feel, make decisions and speak (even if technologically assisted) for ourselves is profoundly discouraging.

Were you part of the PALS/CALS group that sent the letter urging the ALSA to donate their funds to ALS TDI? If so, can you explain a little about the letter and why the group felt it was so important to send to ASLA?

I did not contribute to the creation of this letter but I did sign it. I think it is important for the ALSA to honor the wishes of the vast majority of contributors to this campaign and spend this money on research.

Having said that, I do not believe that it is necessarily a good idea to spend it all immediately. This windfall will not happen again. It is important that any research efforts funded by this money are sustainable. A research effort that spends a large amount of funds upfront without a realistic prospect of continuing support is a dead end. I would like to see the ALSA commit to long-term support for a few of the best and brightest independent research efforts. To researchers who are open and committed to sharing their efforts. Big pharma need not apply. To give these independent researchers assurance that their support will not dry up next year or the year after that is critically important. Therefore, not all of this money need be spent this year. It does need to be committed to research and invested wisely. This will be a challenge, but it is very important. More than ever before, ALSA needs to be transparent and responsive to its constituents in this matter.


“Speak up!” PatientsLikeMe member Dee speaks about her journey with ALS

Posted September 15th, 2014 by

 

There’s been a lot of awareness going on for ALS with the IceBucketChallenge, and to help keep the momentum going, PatientsLikeMe member Dee (redrockmama) shared her personal experiences with the neurological condition. She made the decision to install a feeding tube early in her journey, and now she is managing her weight through overnight supplements. Read on to learn more about her ALS story and why she thinks every person living with ALS should become their own best advocate.

 

Tell us a little about yourself and how you are doing, Dee.

I am 62, married and a mother and grandmother. I have bulbar onset of ALS. I have always been very active and independent to a fault. I was raised horseback riding and still have a horse. I am told my disease is progressing slowly but of course to me it doesn’t feel that way.

Many people in the community talk about how finding an official diagnosis isn’t easy – what was your experience like? 

I actually found out fairly quickly. My symptoms started in April 2013. First doctor thought it was a stroke, second told me it was stress and of course they did MRI’s and blood tests, basic neurological exam and a stress test. Third doctor did an EMG. That was June 2013. Finally hearing someone say it out loud was initially a relief. That feeling didn’t last long.

In the ALS forum, you wrote about your decision to get a feeding tube in February. How has the operation changed your everyday life?

My first doctor told me I had to lose 15 % of my weight for him to order a feeding tube put in. Now understand, my first symptom was slurred speech and within days, difficultly swallowing. We had several issues with this doctor and clinic so we changed doctors. This was January 2014. He asked me several key questions, like; how difficult eating was, did I enjoy my meals or were they a chore, how did food taste, how often did I choke? He said his experience was that doing the feeding tube surgery earlier had better results. The stronger I was the better. We did it within two weeks of that appointment (February 10th). As of the end of May, I am no longer able to eat solid food at all. I have lost about 10 pounds but am currently maintaining well by having my supplement given to me overnight through a Kangaroo pump.

How has being a registered nurse shaped your perspective?

I’m not really sure except that I felt confident I knew what I had before any doctor was willing to diagnose it, and knowing what was ahead of me was frightening. It has made me good at being my own advocate. By being my own advocate, I mean when how I feel doesn’t coincide with what “the professional” is telling me, I speak up and or look for someone who will listen. We all know our bodies better than anyone else and every case of ALS is unique in some way. We have different symptoms, different rates of progression and some have pain, some don’t. Make sure you’re not being categorized. If what they say just isn’t what your gut tells you; speak up! Advocate for what you think is best for you and the way you want to deal with your disease. If you don’t speak on your own behalf who will?

What is one thing you have learned on your journey that you didn’t expect?

I have come to realize that our lives revolve around meals. We are all social beings, and we come together over food and drink. Not being able to do that is really a challenge and even makes the ones around you uncomfortable. Food is comforting and even though I have never been a big eater and I’m not ever hungry, I really miss the tastes and experience.

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Putting the spotlight on ALS

Posted August 15th, 2014 by

If you follow PatientsLikeMe on Twitter or Facebook, you might be wondering why our staff decided to dump ice water all over their heads this past week. Well, here’s what’s up: it all about raising awareness for ALS.

It began in 2012, when local Boston College alumnus Pete Frates was diagnosed with amyotrophic lateral sclerosis (ALS) at the young age of 27. ALS is a motor neuron disease that affects the nerves that control voluntary movement. As the condition progresses, patients are eventually unable to walk, talk, eat or communicate on their own.

We’re all too familiar with ALS at PatientsLikeMe – in 1998, Stephen Heywood, the brother of our founders Ben and Jamie, was diagnosed with the neurological condition, and his journey sparked the journey that became PatientsLikeMe.

Ever since his diagnosis, Pete’s been working to raise awareness about ALS, and when his friend Pat nominated him for the ice bucket challenge, he posted a video encouraging others to “Strike Out ALS.” So in Stephen, Pete and everyone with ALS’s honor, we decided to accept the ice bucket challenge.

 

We also challenged a few of our friends:

Global Genes:

Susannah Fox:

 

Even Stickman made an appearance to help out our friends Jeff Dwyer and Adam Darowski:

 

Of course, it’s not just about pouring water over our heads – it’s about donating to ALS research and educating everyone about what it’s like to live with ALS. The only question is…do you accept the challenge?

Share this post on twitter and help spread the word for ALS awareness. And don’t forget to post your own video of the ice bucket challenge!


“In my own words” – PatientsLikeMe member Steve writes about his journey with ALS

Posted July 16th, 2014 by

For those of you who don’t know Steve, you should! For years he worked as a successful landscape architect designing urban public spaces. In 2006, he was overlooking the design of the historic Boston Common when he was diagnosed with ALS. Steve retired from that career path and quickly started another – creating the Steve Saling ALS Residence, the world’s first fully automated, vent-ready, skilled service residence specifically designed for people with ALS (co-founder Ben Heywood and marketing team member Jenna Tobey went to visit him at the residence not too long ago).

Steve hasn’t stopped with just one residence – his ALS Residence Initiative (ALSRI) provides an environment where people with ALS and other debilitating conditions can live productive and independent lives. As Steven Hawking said, it demonstrates “the roles of technology empowering the lives of those who would otherwise depend entirely on the care of others. I look forward to living centers such as this becoming a standard for the world.” And Steve is on his way to making that a reality – the ALSRI has opened a new house in New Orleans and is currently building another one in Georgia.

Steve recently shared a story on Facebook about an accident that happened while he was on his way to meet up with friends and generously agreed to share it on the PatientsLikeMe blog, too. He put it all in perspective by talking about the challenges of being unable to communicate with medical staff, and how emergency personnel should be better trained to interact with people who have ALS to avoid potentially life-threatening mistakes. Check out what he had to share below.

A tale of friends, beer and ambulances…

I have always enjoyed drinking beer with friends, and ALS did nothing to change that. All spring and summer, my friends and I get together monthly for beer night. Unfortunately, one time I stood them up.

I had parked the van and was almost to Cambridge Brewing Company. I had to cross Portland Street and had to go down a wicked steep curb ramp, and it flipped my wheelchair on its side. It was really no big deal, but the ensuing ambulance ride could have killed me dead.

I appreciate that it must have been quite a sight as a bunch of people rushed over to help me and my mom. I just wanted them to put me back on my wheels so I could go drink beer, but it seemed like the ambulance got there in seconds. They were super nice, but they are paid to be cautious, and I was away from my computer and my grunting protests could not convince anyone not to take me to the hospital.

That is where things got dangerous. Everyone knew I have ALS, but they strapped me flat on my back on a hard board for the trip to the hospital. They were concerned about my spine, but I am already paralyzed and am more concerned about maintaining an open airway, but I had no way to communicate that. If my breathing had been more compromised, I would have suffocated on the way.

Fortunately, my breathing is without difficulty, even flat on my back. My burden with ALS is drooling. I can drool a gallon a day, and I expected to drown on my own spit on the ride to the hospital. One of the few words I can say is “up,” but everyone thought I was complaining about being uncomfortable and off I went. Miraculously, my body recognized the danger, and I realized I had severe dry mouth so I calmed down and made it to the hospital with my mom bringing my chair and more importantly my computer in the van behind the ambulance. I have to say that they were very nice at Massachusetts General Hospital, and my nurses and doctors were hot as balls. It would be tragic if they had killed me by trying to help me. They wanted to do a CAT scan, but I refused and was out within the hour. The whole experience reinforced my fear of going to the hospital when not able to speak. Hospital ERs and EMTs just don’t know enough about ALS to provide appropriate care. This needs to change.

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If you could share one thing… -Steven’s inspiring answer

Posted June 16th, 2014 by

PatientsLikeMe ALS member Steven (sheronemus) was diagnosed with ALS back in 2005, and we recently had the chance to ask a few questions about his experiences. Steven spoke about his initial anger and disbelief, the clarity and focus he developed afterwards and how technology helps him participate in many events he didn’t expect to witness. Read his full interview below.

What was the first thing that went through your mind when you were diagnosed with ALS?

After the initial shock came a phase of denial and anger. Like many people with ALS, I had seen a number of doctors over a period of two years and had received several diagnoses ranging from a pinched nerve to benign fasciculation syndrome. Feeding the disbelief was my anger at the neurologist who, after performing a minimum of tests, told me I was dying and to come back when I needed a wheelchair. Since he was a jerk he couldn’t be right, right? Soon my wife and I felt a profound loss for our 4 children and for all the milestones we wouldn’t share like graduations, weddings and grandchildren.

How did your diagnosis change your everyday life?

My diagnosis brought clarity and focus as the realization set in that wallowing in fear gave ALS a victory it didn’t deserve. I am living, not dying, and we live as normally as we can while being proactive about planning for my future needs.

Looks like you’re very active on PatientsLikeMe – what tools do you use the most, and what have you learned about your condition?

I really love tracking my condition and I use the charts to help keep friends and family updated on how I’m doing. The most important thing I have learned is how different and intensely personal everyone’s journey is. Just because something works for me doesn’t mean it is right for others. The forum allows us to share experiences and build supportive relationships.

We see your daughter just got married last autumn – congrats! How did technology help you participate in the wedding?

The wedding of our oldest daughter was one of milestones I didn’t expect to witness. It was a beautiful day. The most obvious technology I used was my standing powerchair that allowed me to “walk” my daughter down the aisle and dance with her. Equally important, though, were my VPAP, Diaphragm Pacing System and PEG feeding tube, all combining to give me the strength to participate, not simply observe. We’ve also recently been blessed with our first grandchild, a girl, whom I talk to with my new eyegaze communication device.

If you could share one thing with the greater ALS community, what would it be?

Don’t let fear for the future ruin the beauty and gift of today.


What lies ahead – PatientsLikeMe member John shares his journey with ALS

Posted May 14th, 2014 by

It’s already the second week of ALS Awareness Month, and as promised, we’ve got an interview to share with John (johnpp) – a PatientsLikeMe member that has been living with ALS since his diagnosis in the spring of 2013. John talks about a new sense of urgency that he feels along with his reaction and outlook after being diagnosed with ALS. And as we speak, he’s traveling across the United States with his adorable dog, Molly (that’s her in the picture) to help raise awareness and funds for ALS through his artwork. Learn more about his efforts on the ART 4 ALS website and check out his full interview below. 


When did you first start experiencing symptoms of ALS? What was your diagnosis experience like?

I first experienced ALS symptoms early in 2012 as I was trying to wind down a career in metropolitan planning. At the time, I was also heading up the recovery group I helped establish in our hometown of Schoharie NY after the devastating floods from Hurricane Irene in August 2013. The flood had put 85% of all homes and 100% of all businesses in town out of commission. I’m proud of the response from the community and from all over. Our group organized over 400,000 volunteer hours in the first year after the flood!

By the fall of 2012, folks were commenting that they were having a hard time hearing me at meetings. At the time, I thought my speech difficulty was related to recent dental work or simply stress. My wife of 33 years and soulmate, Bobby, had serious medical issues and we were doing home hemodiaylsis daily (even during the three months we had to live in our motorhome while our house was uninhabitable).

I stepped down from the recovery group in April 2013 and decided that I should go to a specialist about my speech symptoms. I chose the Movement Disorders Clinic at Albany Medical Center and had blood tests, MRI, etc. In August, the EMG test showed scattered motor neuron damage throughout my body and the ALS diagnosis was pretty solid.

My initial reaction was (1) relief that my condition would likely leave my mental capacities intact. Both of my parents died of Parkinson’s with dementia and full-blown-dementia is not something I wanted to deal with. (2) shock that it was ALS. Whoever thinks that? (3) gratitude for the life I have had. For the first time, I understood the sentiment expressed in Lou Gehrig’s “luckiest person” speech.

You’re traveling across the country with your awesome dog Molly – can you tell us a little about ART 4 ALS and what you hope to achieve?

In December of last year, my neurologist was up front with my prognosis. He said that I am at a high risk for respiratory failure because of my bulbar onset and that, if the failure kicks in, I had about two years to live. If not, he said I have maybe five. He added that if I plan to travel, to do it within the next six months or a year before it becomes more challenging.

That night, I spoke with my wife and she agreed to try to get stronger so we could travel. The next morning she was so weak that she went to the ER. Her body gave up and she died within 36 hours.

After a few months, I decided I would like to travel while I am able, and realized I would need a purpose to make sense of the journey. Since my ALS symptoms (speech, swallowing, weak arms and hands) would be evident to those I encounter, I chose to make the trip about ALS awareness. I prepared a 4 x 5 inch handout that talks about the trip, my art, ALS and the need for research. Friends suggested that Molly would be the face of the trip, so she is featured on the handout and our website. (She is also keeping her own blog, which seems to be more popular than mine!) Often, folks will ask about Molly and that opens the door to talk about the trip and about ALS.

Interest in the trip is strong in Schoharie, so I also set up a way for individuals to pledge to ALS research on a per mile basis. (See www.art4als.com)

Molly (isn’t she cute?!)

Why did you choose to donate all proceeds from your paintings the ALS Therapy Development Institute?

I chose to donate the proceeds from any artwork to ensure I would actually do artwork during the trip. There are many valid avenues for giving to support ALS research. I chose the ALS Therapy Development Institute because of its focus on near-term treatment options.

You mention on your website that you now realize there is an urgency to everything – how has this outlook affected your day-to-day life?

If there is a blessing to having ALS, it is the fact that I have a pretty clear idea of what lies ahead. There will be a time in the not-too-distant future when I won’t be able to do the things I can today. So I make myself explore, observe, contribute, participate as much as is healthy while I can. I have several projects and trips planned with my grandkids later this summer, knowing that next year they won’t be as easy. I have observed that the major characteristics of PALS (Patients with ALS) include hope; advocacy; interest in innovative therapy options; frustration with declining abilities; and regret for not having done more while he or she was still able. I am determined to minimize my regrets.

How has the PatientsLikeMe ALS community helped you learn more about managing and living with your condition? 

There are a number of online community forums available to PALS. When I stumbled onto PatientsLikeMe I was amazed at the sophistication of the website and the amount of information volunteered by so many people. I have searched on the website for other individuals with symptoms that are taking a similar course to mine and am following them, gleaning ideas about adaptive devices I may consider in the future. I have reviewed the self-reported efficacy of different treatments I have considered. This information is available nowhere else. While other forums seem to be content with basic ALS information and random user discussions, PatientsLikeMe offers the breadth and depth of information that I need to live my life fully.

What’s one thing you’d tell someone that has just recently been diagnosed with ALS? 

It’s not quite one thing, but I’d say take time to process the shock; realize that the diagnosis is not just about you, and let your family grieve; and use your days productively in a way that you will reflect on someday with pleasure.

Thanks for asking.

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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