9 posts from January, 2015

“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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“Strength will come, somehow, from somewhere” – PatientsLikeMe member Glow4life shares her journey with lung cancer

Posted January 26th, 2015 by

PatientsLikeMe member Glow4life was diagnosed with lung cancer (adenocarcinoma) this past June, and her story is a testament to never losing hope. She recently shared her experiences in an interview, and she spared no details in describing her challenges. Despite her terminal diagnosis, four rounds of chemotherapy and the sudden loss of her husband, Glow4life has remained positive, and she’s learned to take every day as it comes and live in the moment. Learn about her journey below and how she shares love and hope whenever she can.

How did you react after getting diagnosed with lung cancer in 2013? What was the diagnosis process like?

I had a routine X-ray in February 2013, after attending A & E with chest pains (which turned out to be nothing). A few days later I received a letter asking me to return in 6 weeks for a follow up X-ray, as there was a suspect area, probably scarring from a previous chest infection but best to check. My general practitioner reassured me it was unlikely to be sinister, if cancer was suspected I’d be looked into immediately. I thought no more about it and returned for the repeat X-ray as scheduled. The following day my GP rang me to tell me there was a tumor on my left lung that required further investigation, and gave me the number to ring for a scan, which took place within a couple of weeks. I asked if this was likely to be cancer, and he told me it almost certainly was. The scan did, in fact, reveal a cancerous tumor, and I was referred for a PET scan and bronchoscopy. On the 27th of June, I was seen by the specialist who gave me the news that adenocarcinoma was confirmed, and had spread to the other lung, and right adrenal gland, and was given an appointment with an oncologist, who would assess appropriate chemotherapy. It’s impossible to describe how this feels, but you know that your life has changed forever. I saw the oncologist on the 7th of July and was offered a course of cisplatin/premetrexed, a course of 4 to 6 treatments, every three weeks, in an attempt to shrink the tumors and prolong life.

I was told my prognosis was terminal, and that with successful chemo, 20 percent of patients survive a maximum of 12 months. If we were shocked before, nothing compared with this, it was like being hit by a wrecking ball. I started my chemo on the 23rd of July and had the fourth session in October, which was followed by a CT scan. This showed that the tumors had shrunk and no further chemo was necessary. A maintenance course of premetrexed was available but not recommended, as the chemo had made me very ill. Since then I have been on watch and wait, every three months, last time extended to four. I go for X-ray and blood tests before my appointment with Dr. Brown, my oncologist. My cancer is stable, though not cured, and my general health is good, as is my quality of life. I do tire very quickly, but then I’m getting on a bit!

You’ve received treatment for your tumors – what’s it like being on a “watch and wait” plan?

Being on ‘watch and wait’ is like having the sword of Damocles hanging over your head, you never know when it might drop. But I try not to dwell on that, it would be wasting the extra time I have been given in pointless worry and speculation. I try to forget about it between visits, and for the most part I do, though I must admit to a certain amount of anxiety in the couple of weeks prior to the next appointment.

How has your day-to-day life changed since being diagnosed and treated for lung cancer? 

Well, I thought the worst possible thing had happened to me and things couldn’t possibly get worse. But I was about to find out different. It’s hard for me to answer this objectively, as 3 months after the diagnosis, and while I was in hospital having my 2nd chemo, my husband Tim was found dead at home, having suffered a cerebral occlusion. Tim was 11 years younger than me, and in perfect health, so the shock was profound, for all of us. I passed the next few months in a fog of chemo and grief, it was the hardest time imaginable, but the days passed and I got through it.

My life has changed beyond all description and I can say with all honesty that living without Tim is much harder than living with cancer. Loneliness is my biggest issue now, and wishing he was here to help me through this, which I know he would wish he was here to do. One thing I did learn was that having a terminal illness doesn’t make us closer to death than anyone else, and that life can be taken from any of us, at any time. So it’s important to take each day as it comes, and make each one count. When I die, nothing will be left unsaid, no actions regretted or opportunities missed.

I fear death much less than I did, while still embracing what life is left to me. We all have a time to leave this world and move on to whatever adventure lies beyond, and I know that the time is coming when Tim and I will be reunited in spirit. I will be sad to leave my beautiful family, but happy that I’ve been given this time in which we’ve all been able to prepare, and make the very most of the chance to let them know how much I love them. And we all have to leave sometime!

What have you learned from using the InstantMe feature on PatientsLikeMe?

What I’ve learned from PatientsLikeMe is that I’m not alone in this, so many of us are dealing with similar issues, and that while cancer is different to each individual, what is the same is that most of us are devastated by the effect it has on our loved ones. It’s so hard to see their sorrow, and know you are the cause and can do nothing to stop it. I’ve also learned that many people are much worse off than I am, having succumbed so much faster, while I am still here and comparatively well. Each time I go for a scan/bloods/chemo, or to oncology I see the waiting room full, and think, so many of us, all with similar fears and trepidation of what is coming our way.

We read that your motto is “Never give up, never give in” – along with that, what else would you say to someone who has been recently diagnosed with lung cancer?

What I would say to anyone recently diagnosed is this: You will wonder how you are ever going to find the strength to cope, how do people do it? But be assured that the strength will come, somehow, from somewhere, and you’ll find your way through. Take one day at a time, and make each one count. Prepare for every eventuality, but never lose hope. Follow good advice, not fads. Try not to look too far ahead and live in the day, or even the moment. Don’t think of yourself as dying from cancer, but as living with it. One of Tim’s favorite sayings, when the times were tough, was “Head up, son” I say that to myself every day.

And don’t Google! You’ll frighten yourself with out-of-date misinformation and meaningless statistics. Listen to the experts.

Finally, share love and hope wherever you can, while you can.

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PatientsLikeMe member Tam builds first-ever ‘by patients, for patients’ health measure on the Open Research Exchange

Posted January 21st, 2015 by

Back in March last year, we shared on the blog about a new grant from the Robert Wood Johnson Foundation that would help support two patient-led projects on our Open Research Exchange (ORE) , a platform that brings patients and researchers together to develop the most effective tools for measuring disease. We were overwhelmed by the response from the community, and we’re excited to share that one of those projects is very close to being completed.

Tam is living with multiple sclerosis (MS), and she’s been a PatientsLikeMe member for more than 4 years. After her diagnosis and experiences with her doctors not “getting” what pain means to her, Tam decided to create a new tool for anyone who might be experiencing chronic pain. Her idea is to build a measure that can help doctors better understand and communicate with patients about pain.

Watch her video above to learn about her journey and listen to her explain her inspiration behind the new ORE project.

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What do you know about cervical cancer?

Posted January 20th, 2015 by

January is Cervical Health Awareness Month, but it’s not just a month to learn more about cervical cancer, it’s about learning how to prevent it. Since the 1950s, there’s been in increased effort to raise awareness for prevention screening, and from 1955 to 1992, the cervical cancer incidence and death rates declined by 60 percent.1

But there’s still work to be done, as the NIH estimates that over 12,000 women will still be diagnosed with cervical cancer in 2015.1

Our own Priya Raja spoke about cervical cancer awareness on the blog about a year ago, and she stressed the importance of Pap smears and making them available to all women around the world. During January, the awareness focus will be on preventative screening as well as cervical cancer itself, because as Priya said, “being screened just once can reduce the likelihood of having cancer.”

You can learn more by checking out the National Cervical Cancer Coalition’s website and the Center for Disease Control and Prevention’s infographic on cervical cancer (featured to the right). And if you’ve been recently diagnosed with either HPV or cervical cancer, reach out to others like you in the PatientsLikeMe community.

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1 http://report.nih.gov/nihfactsheets/viewfactsheet.aspx?csid=76


Seeing [MS]: The invisible symptoms – fatigue

Posted January 15th, 2015 by

“It’s like I’m deflated. I don’t feel like doing anything.”

That’s how Darcy McCann says he feels on most days. He’s a young Australian who was diagnosed with multiple sclerosis [MS] at the age of 10, and his most debilitating symptom is fatigue, which comes and goes as a result of his nerves being constantly under siege.

 

You are now seeing fatigue

Photographed by Juliet Taylor
Inspired by Darcy McCann’s invisible symptoms

Darcy worked with award-winning photographer Juliet Taylor to capture how he feels when enduring bouts of fatigue. His video and picture are part of the Multiple Sclerosis Society of Australia’s (MSA) Seeing [MS] campaign, which is all about recognizing the invisible symptoms of MS and raising awareness for the neurological condition. Check out the previous pictures and stay tuned for more Seeing [MS] posts.

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PatientsLikeMe members to be highlighted in patient empowerment webinar

Posted January 13th, 2015 by

Many PatientsLikeMe members talk openly about the reasons why they donate their health data and why they believe patient-centered healthcare means better healthcare for all. And just a week from now, two of them will be sharing their stories with everyone in a live webinar.

On Tuesday, January 20th, at 2:00pm EST, the Partnership to Improve Patient Care (PIPC) is hosting their first “Patient Empowerment Webinar,” an online event focusing on the importance of patient engagement in their own healthcare and in health policy. Two PatientsLikeMe members, Ms. Laura Roix and Ms. Letitia Brown-James, will be participating in the discussion, and their experiences will be a part of the webinar. Here’s a little bit about Laura and Letitia, and more ways they’re already empowering others:

Laura is a member of the idiopathic pulmonary fibrosis (IPF) community on PatientsLikeMe, and she recently traveled to Maryland to speak at the Food and Drug Administration’s (FDA) Patient-Focused Drug Development Public Meeting on IPF.  Laura went with our very own Sally Okun RN, VP of Advocacy, Policy and Patient Safety and spoke about her journey and what it’s like to live with IPF. (She recapped her experiences in an October blog interview.) But that’s not all Laura shares – she’s a 3-star member on PatientsLikeMe, which means she is a super health data donor and always keeps her information up to date so others can learn from her.

Letitia has been living with epilepsy since she was little, but after connecting with the PatientsLikeMe epilepsy community she learned about new treatment options available to her, like surgery. She shared about her experiences in a video, and after receiving her surgery, she’s been living seizure-free for years. Letitia is also a part of the first-ever PatientsLikeMe Team of Advisors, a patient-only panel that gives feedback on research initiatives and creates new standards to help all researchers understand how to better engage patients.

The PIPC webinar is open to everyone, so if you’d like to join, please RSVP to the event coordinator via email. Hope to see you there!

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The Patient Voice- MS member Jackie shares her story

Posted January 12th, 2015 by

 

When Jackie was diagnosed with multiple sclerosis after a long, exhausting process, she struggled with a fear of the unknown and had no idea what she would be facing. But then she connected with the thousands of MS members on PatientsLikeMe. Jackie shared with the community about how she felt her current medication was making matters worse instead of better, and others responded with how they had the same experience. They told her about a new medication that seemed to be working for some of them. Jackie’s doctor prescribed it after she mentioned what others had shared, and she’s been having good luck with it ever since. Watch the video to see more of her journey.

 

 

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“I continue to be inspired by those who share this fight with me” – PatientsLikeMe member Doug shares his journey with HP

Posted January 9th, 2015 by

Meet Doug. He’s part of the pulmonary fibrosis (PF) community on PatientsLikeMe and is living with a condition specifically known as chronic hypersensitivity pneumonitis (HP). It’s similar to other types of PF, but also has its differences. We caught up with Doug for an interview to help spread the knowledge about these two conditions, but learned so much more. He shared what it’s like to live with HP, how he uses PatientsLikeMe to learn more about his own health and how the community has helped him to stay inspired in his fight.

Can you share a bit about your chronic HP? Can you explain to our blog followers how it’s different than IPF?

I believe the major difference is that with hypersensitivity pneumonitis there is a cause. If I’m correct there are three forms: acute, subacute and chronic. All are caused by exposure to an antigen that may or may not be identified. In my case, I have chronic hypersensitivity pneumonitis (HP). My specialists have determined that it’s not necessary to identify the antigen since my condition is chronic and cannot be reversed.1

What was your diagnosis process like, and how was it different than what you’ve heard about getting diagnosed with IPF?

Of course I can’t compare how it ”feels” to have HP vs. IPF, and I’m no expert, but I will give you my version of the difference between HP and IPF. First, both are forms of pulmonary fibrosis. With HP, the fibrosis forms primarily higher up in the lungs, and IPF forms in the lower part of the lungs. Air trapping occurs in cHP but not in IPF. I have no idea how this impacts me as a patient, but I’ve included a comparison from Dr. Jeff Swigris.

Apparently another difference is that HP fibrosis is caused by inflammation, whereas IPF is caused by different forms of pro-fibrotic influences. Generally speaking, specialists recommend an anti-inflammatory drug (prednisone) and/or an immunosuppressive such as azathioprine, mycophenolate, cyclosporine, or cyclophosophamide. In my case, my doctor and I agreed on a course of mycophenolate. Initially, it had significant side effects, such as severe fatigue, poor sleep, weight gain and depression. I switched to Myfortic, which is a different brand of mycophenolate, and now the side effects are minimal. I have much more drive and I feel much better! It’s still too early to tell if it will help. My concern is that my pulmonary function test (PFT) results have dropped in the last four months, so I’m concerned that I’m deteriorating. At the moment, I function almost normally. I have a walking routine that includes a 7.5 K walk, which I can complete in an hour. I now require supplemental oxygen for long flights, but I still consider myself lucky!2

You frequently use the InstantMe and Quality of Life tools on PatientsLikeMe – why do you like to use these to donate your data?

I find it’s good to have a record of your health pattern. This can include how you feel daily as well as a record of the medications I’m on. I print out portions of this for my doctors’ appointments and it helps me be well prepared.

How have others in the HP and IPF communities on PatientsLikeMe helped support you on your journey?

My biggest concern is that HP is the “poor cousin” in the PF family! There are very few of us online and therefore it’s difficult to learn as much as I’d like to! Nevertheless, I have learned a lot about shared aspects of PF such as patient care, oxygen therapy and lifestyle issues. I continue to be inspired by those who share this fight with me and I’m always grateful when I’m able to learn something that will help me.

I’ve always told my wife I plan to die of old age! One of my strengths is that I have a great attitude. Participating in platforms like PatientsLikeMe helps me not only learn more, but it fortifies my attitude!

Many people may not know about rare conditions like HP and IPF. If there was one thing you thought someone who doesn’t have a clue should know about HP, what would it be?

That’s a tough question because there is so much more I need to learn before I feel I can address this question. I suppose the key with HP is that if you have developed acute or subacute forms of the disease you may be able to arrest the fibrosis before it progresses too far.

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1 http://nationaljewish.org/Participation-Program-for-Pulmonary-Fibrosis/Community/Blog/Participation-Program-for-Pulmonary-Fibrosis/November-2013/What-is-Chronic-Hypersensitivity-Pneumonitis

2 http://nationaljewish.org/Participation-Program-for-Pulmonary-Fibrosis/Community/Blog/Participation-Program-for-Pulmonary-Fibrosis/November-2013/Some-of-the-nuance-about-cHP


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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