On October 9th, Bloomberg TV aired a four-and-a-half minute “Innovators” segment profiling PatientsLikeMe’s journey as a company.  Filmed partially in our office in Cambridge, Massachusetts, the piece features PatientsLikeMe Co-Founder and Chairman Jamie Heywood as well as Ed Sikov, a PatientsLikeMe member with Parkinson’s disease.  Our thanks go to Bloomberg’s Nicole Lapin for her in-depth coverage of our evolution into a data-sharing platform that, as she puts it, “functions more like a clinical trial.”

Watch the Bloomberg TV profile below:

Visit our Press page for other recent PatientsLikeMe media highlights.

Did you know that 1 in 10 people worldwide have rare and genetic conditions?

PatientsLikeMe was a proud sponsor of the 1st Annual Tribute to Champions of Hope, organized by our partner the Global Genes / RARE Project. Held on September 27th in Newport Beach, CA, the gala recognized outstanding individuals who are working to affect change in the rare and genetic disease community.  All proceeds from the event – which attracted celebrities, medical researchers, pharmaceutical executives and even Olympic champions – go to benefit programs for patients and advocates.

In attendance from PatientsLikeMe were Ben Heywood, Arianne Graham and Deborah Volpe, who got to hear inspirational stories of the work these champions of hope are doing.  Highlights included the Biotechnology Award given to Charles Dunlop of Ambry Genetics and the Mauli Ola Foundation, which organizes therapeutic surf experiences for kids with cystic fibrosis, and a preview of the documentary Here. Us. Now., which chronicles a family with twin daughters diagnosed with Niemann-Pick Type C, a rare, incurable and fatal genetic disease.  Lifetime Achievement Award recipient Henri Termeer, the former President and CEO of Genyzme, aptly summed up all those who received awards as “people that have a sense that if they focus, they can make a difference.”  (Click here to read about all eight Champion of Hope honorees.)

After uplifting musical performances and talks by celebrity presenters Jason George (“Grey’s Anatomy”) and Nestor Serrano (Act of Valor), the night ended with a heart-stopping, impromptu rendition of “Somewhere Over the Rainbow” performed by several rising singer-songwriters, including Chris Mann and Katrina Parker from the “The Voice,”  Elliott Yamin from the fifth season of “American Idol” and Gracie Van Brunt, a young girl battling a rare genetic disease called Shwachman-Diamond Syndrome who performed her own original song earlier in the evening.

The gala was followed the next day by the 2012 Patient Advocacy Summit, a forum where patient advocates could discuss issues that directly affect them, from resources to policy. PatientsLikeMe Co-Founder and President Ben Heywood was featured on the Innovative Technologies and Platforms panel, sharing the stage with Dr. David Eckstein of the NIH’s National Center for Advancing Translational Sciences. Discussing the topic of “Accessing the Science,” they each gave an overview of how patient registries and clinical trials are promoting change and advancing medical research.

As a prime example, PatientsLikeMe joined forces with the Global Genes / RARE Project last year to create the RARE Open Registry Project, a resource for patients and families fighting rare and genetic diseases.  What makes it different from other registries is every time you enter data into the system, you receive information back showing how your data compares to others fighting similar diseases or taking similar therapies.  If your family is impacted by a rare or genetic disease, we invite you to join the registry today. 

Many patients with life-changing conditions report feelings of grief and guilt about no longer being able to do many of the things they did in the past.  As a recent discussion in our forum revealed, however, patients are finding ways to reset their perspective and boost their self-esteem by focusing on what they are still able to give to others, despite the challenges of their illness.

Here are some of the small and large contributions our members have made, helping them to feel good about themselves:

• Going to the hospice to sit and talk with the residents
• Sending handwritten letters via snail mail to loved ones
• Participating in educational events about the role of service dogs
• Getting good friends together for a gathering to reconnect
• Volunteering in a food bank to appreciate having food to eat
• Calling an isolated grandparent or friend regularly on the phone
• Allowing the cat from down the road to come inside and snuggle
• Fostering or adopting medically fragile children in the system

Have you found strength – or a renewed sense of purpose – by doing what you can to help others?  Share your experiences in the comments section.  Also, you may want to check out two books recommended by our members for inspiration:  Strong at the Broken Places, about five different patients with chronic illnesses including ALS and Crohn’s disease, and 29 Gifts, written by a multiple sclerosis (MS) patient whose South African healer gave her a prescription of helping others for an entire month.

You may recall that in July we shared a video about Doctors 2.0 and You, a conference focused on how physicians are using web 2.0 technology.  Today we’d like to present a real-life example of this concept: Dr. Jim King, MSc, MD, FRCPC.  A pediatrician at the Children’s Hospital of Eastern Ontario (CHEO) in Ottawa, Dr. King runs a number of different clinics for rare diseases.  He also serves as the hospital’s Medical Director for Informatics.  Find out how he has used PatientsLikeMe as part of his practice and much more in our interview below.

1. How did PatientsLikeMe come to your attention?

We were doing a presentation a number of years ago, in 2006 I guess. We were talking about a number of things, but more specifically the use of mobile technology in healthcare and research as well as personal health records. So we were sort of working up some information and then we came across PatientsLikeMe. We were basically looking at some of the business models around personal health records, specifically around Microsoft Vault and Google Health and those things, and we thought PatientsLikeMe had a little bit of a different spin.

2. As a pediatrician, how have you used PatientsLikeMe?

I specifically used it in one of my clinics. I follow a number of teenagers that have orthostatic intolerance and also chronic fatigue and fibromyalgia and other conditions related to orthostatic intolerance. I get a lot of questions about different medications. The families are very well versed in information and are always looking for new sites to visit. So I will often direct them to PatientsLikeMe. You can find sites with support groups, but you never really know how many people are involved. Then people are going online and looking up things by themselves. But I felt that all the information being presented back through PatientsLikeMe was pretty good.

One example was a 16-year-old patient with fibromyalgia. Their family doctor had recommended she take gabapentin based on a news article. So in the past, and even currently, one of the ways I would look at this situation and get as much information as possible would be to go on sites like PubMed or Bandolier, the Oxford site in the UK, and try to pull together what worked and what didn’t work. Some of these sites are pretty good because often they will tell you what the positive outcome is. But one of the difficulties is that they don’t always tell you what the adverse affects are.

It was nice because I sat down with this patient and we pulled up PatientsLikeMe. And I think at that time there were a couple hundred patients that had been on gabapentin and the actual number that had side affects, I’m just recalling now from a few years ago, was equivalent or slightly greater than the amount who had actually benefited from the medication. So we made a decision at that time not to actually go on gabapentin. Instead, we tried some other things. It was very helpful in my daily stream of care to be able to do that.

3.  We have a large community of fibromyalgia and chronic fatigue syndrome (CFS) patients at PatientsLikeMe. What are some of the challenges for adolescents with these conditions?

There are multiple challenges. I think the first challenge is that it’s really an undefined condition. There isn’t a specific diagnostic test, so labeling is a bit of a challenge. Sometimes it takes time for people to understand the impact. And, it’s the same as any chronic illness that doesn’t have overt physical symptoms. You know, everyone looks normal but they feel terrible. When you’re feeling bad all the time physically, or a lot of the time physically, that can make you feel unwell mentally. So having a place where you can go to actually hear that and learn how other people are coping and dealing with it is a big benefit. It certainly shouldn’t hurt, right? And there can be some pretty positive effects from having a community as well.

We are making a diagnosis based on a constellation of symptoms so there are probably a lot of different disorders or a lot of different reasons why someone has a diagnosis of chronic fatigue. So because it’s such a heterogeneous group, there are going to be a lot of different management and therapeutic approaches. So, you really need a large number of people to start understanding what’s working and what’s not working. And again, compiling and pulling that information together is quite beneficial.

4.  Do you have any thoughts on how large online data sets at PatientsLikeMe or other websites could shape the future of healthcare?

You can’t manage what you can’t measure, right? That’s quite obvious. So, if we can do better measurements along knowing what your population is, but have something on what the actual outcomes are, that should be beneficial in the long run. It’s like anything. You have to know your population really well. And if you can define your population really well, then these large data sets, and I would say sites like PatientsLikeMe, can be quite powerful. It is a definite movement and force going forward, for sure. You need thoughtful stewardship for this, and you need a thoughtful ability to analyze the data and make clinical sense from it.

5.  Anything else you want to add about PatientsLikeMe?

For me, there are two other things.  First, the actual connections for people from sites like this are quite important – you know, the support group piece. And also you will have people with multiple problems and they may be doing something that seems to be a bit unique but is beneficial. Also, say you have a condition which is rare and there are only a couple of hundred cases in the world. You learn so much more when you start connecting and you find that maybe a problem, like fever, is a normal part of the illness and people just haven’t gotten together to figure it out. Being able to share that information relieves a lot of stress for families – we hate the unknown – and is quite powerful.

Second is the explosion in clinical information, especially the way things are going with genetics, molecular biology and bioinformatics. The ability to be diagnosed or know your risk and response to treatment with one or multiple diseases based on your genetic material is fantastic.  While there is tremendous potential, this is extremely complex and what we are going to see is that our phenotypes, our observable characteristics or traits, may or may not match our genotypes, the inherited instructions within our genetic code. I think sites that can link large groups are going to become more powerful.

So, as we are pulling all those things together, it will be important to have a source where you can actually be able to make sense of it and make it a lot easier to get some prognosis for guidance for people about what’s going to happen. Because a lot of times, you’re sort of in the dark with a lot of uncertainty for some conditions. So I think pulling that information together can be quite powerful and liberating.

Check out some of the media outlets that have highlighted health social networks recently – including PatientsLikeMe and our members.

Social Media a Godsend for Patients with Rare Diseases
PatientsLikeMe is highlighted as a good example in this Chicago Tribune article.

Medical Innovation Needs Silicon Valley Speed, Stat
Fast Company cites us for providing “unprecedented levels of feedback on side effects.”

How Social Networks Enable Patients to Be More Involved in Their Healthcare
PatientsLikeMe is “at the heart of this shift,” according to this Guardian (UK) article.

Telemedicine Tackles Mental Health Treatment
Our InstantMe survey of how you’re feeling is called out in this Information Week piece.

Match.coms of Clinical Trials Make It Easier to Connect Patients, Researchers
We’re spotlighted as one of the “matchmaking” services that could expedite research.

To see more PatientsLikeMe media coverage, visit our Press page.   To read other articles about Health 2.0 and join the discussion, follow this Twitter hashtag.

A native of Glasgow, Scotland, Graham Steel is a longtime “Guest Researcher Member” of PatientsLikeMe.  Following the death of his brother Richard at the age of 33 from a rare condition known as variant Creutzfeldt-Jakob Disease (vCJD), Graham became involved in patient advocacy work, and most recently, in lobbying for open access to published scientific research.  Find out how this active blogger and Tweeter developed a passion for data sharing in our interview below.

1.  Tell us how you first got involved in patient advocacy work.

As per my PatientsLikeMe profile, this started in 2001. Two years after the loss of my only sibling to vCJD, I was approached by a UK organization called the Human BSE Foundation to act as their Vice-Chair. Quite a daunting task for a 33-year-old!! I was involved in that capacity until 2005. Over the years, my interests in science and information sharing to this day continue to diversify.

I’m a great believer in complete openness and transparency as anyone who knows me in real life or via the Internet knows. One of my key assets seems to be “connecting people,” something that I started doing at the age of four. I enjoy making new connections and this is made so much easier with the advent of the web.

2.  You’ve been a member of PatientsLikeMe since 2007.  What key changes have you seen the site go through in that time?

I am not 100% sure where I first found out about PatientsLikeMe but it was most probably via the main ALS TDI Forum. I’m not a “regular” PatientsLikeMe forum poster with only 197 posts since February 2007. Some key changes that spring to mind: the addition of a PatientsLikeMe blog was a great development. A couple of years ago, a “Share This” button was added to the blog making it much, much easier to share content via social networking sites, etc.

The PatientsLikeMe platform itself has expanded in many ways since 2007. At that time, if I recall correctly, ALS/MND was the only disease covered. Now, that has increased to >1,200 conditions, so that alone is a major development. New features get rolled out on a regular basis and they are accompanied with good and clear explanations. It’s also much easier to ‘drill down’ to/for specific content, and the site is generally simpler to navigate than back in 2007, IMHO.

3.  You have recently campaigned for open access publishing. Why is this important to patients?

Yes, as of late 2006, I stumbled upon my first Open Access (OA) Manuscript, as it happened via Public Library of Science Pathogens. Up until that point, I had assumed that ALL Scientific, Technical & Medical (STM) content was locked up behind paywalls. As such, it was very enlightening to discover an alternative to traditional publishing. As matters stand though, only ~15% of Peer Reviewed STM Manuscripts are OA, and subscription-based publishing is still “the norm.” The reason that I became part of the OA Community was to use my networking skills to make more people aware of and involved in OA. OA itself however is just one cog (but a significant one) in the wheel of Open Science!!

“Why is OA important to patients?” Where does one start?! One of the best recent responses to that question comes from PatientsLikeMe’s very own Dr. Paul Wicks with his guest post over at the Public Library of Science Blogs dated June 14th, 2012, and entitled “Open Access Is Not For Scientists. It’s For Patients.”

Two key sections of that post that stood out for myself most were:

“In the past six years, we’ve found that more and more patients are trying to access research studies written about them, including studies where they were participants. In addition, they are increasingly capable of understanding them. Yet closed access is locking them out of better understanding their conditions and their choices.”

And…

“As a society, we need to recognize that our understanding of disease doesn’t belong to science. It belongs to the patients (who are also usually our funders, by the way), and we should exist only to serve them.”

4.  What do you see as being critical for the future of patient advocacy?

The Internet, Open Data and The Semantic Web. In terms of the sharing of data from patients, PatientsLikeMe was the first platform (that I am aware of) that made it easy for patients to share their data online with others. Whilst this data is “open,” it is open to the PatientsLikeMe community (and selected others) but not open at large. As stated in June this year by Sir Paul Nurse, “the President of the Royal Society said there was a need to put safeguards in place to protect confidentiality.” Sir Paul said that in reality no data was “totally secure” and that doctors already relied on personal information for treatment. “If you want a complete guarantee of privacy you would have to diagnose and treat yourself,” he said. (Also, see the recent “Science as an open enterprise” report by The Royal Society).

In terms of the semantic web and link data, entities such as http://linkeddata.org/ and http://www.linkeddatatools.com/ have a lot of potential in terms of what we can do in a linked up world. Also in June, in his talk at TED Global entitled “Unreasonable People Unite,” John Wilbanks made a number of interesting points. From the TED Blog:

“Wilbanks’ proposal is a medical commons, a way for people to gather this medical data and share it freely. People are neurotic about privacy and keeping control of their data. ‘Some of us like to share as control.’ And, he believes we live in an age where people agree with him. He mentions a study run at Vanderbilt University in Tennessee. ‘It’s not the most science-positive state in America,’ he says. ‘Only 5% wanted out. People like to share if given the opportunity and choice.’ And not using this data to understand health issues through mathematical analysis ‘is like having a giant set of power tools but leaving them not plugged in while using hand saws.’”

Ladies, we know your lives get busy.  So why not pull out your calendar or smartphone right now and see if you’re due for a visit to your health care providers?  You’ll be doing your part for National Women’s Checkup Day (observed today, Monday, May 14th), an annual event that’s part of National Women’s Health Week.

Checkup Day encourages women to get regular checkups that are vital to the early detection of heart disease, diabetes, cancer, mental illnesses, sexually transmitted infections and other conditions.  The reason is simple.  Women often serve as the caregivers for their partners, children and parents. As a result, their own well-being can be secondary at times.  The theme of National Women’s Health Week 2012 – “It’s Your Time” – speaks to the fact that women need to prioritize their own health as well.

Not sure what preventative screenings are recommended for you?  Check out this handy chart organized by age group.  Then take the Checkup Day pledge along with women around the country to get at least one recommended screening during May. If you’re concerned about cost, you should know that all recommended preventative screenings – such as mammograms, colon cancer screenings, Pap screenings and well-woman visits – are now covered by your insurance plan with no out-of-pocket costs.

But scheduling an appointment may just be the first step.  If you’re looking to get healthy in 2012, why not do it with the help of a community?  The 2012 WOMAN Challenge offers an online platform for tracking your nutrition goals and daily activity.  The challenge is to follow through with planned nutrition changes and be active 30 minutes a day, at least five days a week, for six out of eight weeks.  Register here to get started.

If you’re a woman living with a health condition, you can also find a community of women right here at PatientsLikeMe.  We have 70,995 female members who are sharing how they are managing more than 1,000 different conditions, including fibromyalgia, endometriosis, menopause, infertility and postpartum depression.  Take control of your condition with the help of women just like you today.

In observing Rare Disease Day at the end of February, we talked how there are 7,000+ conditions that are categorized as rare diseases due to their lower prevalence (less than 200,000 people in the US).  Today we’d like to spotlight one of these lesser-known conditions:  multiple system atrophy (MSA), which affects 536 PatientsLikeMe members and approximately 50,000 Americans.

There are no celebrities with MSA, nor is there a high-profile nonprofit organization driving awareness of the disease.  Instead, MSA patients have organized themselves through a “Miracles for MSA” Facebook page and determined grassroots efforts.  They’ve also designated March as Multiple System Atrophy Awareness Month.  Their goal?  “We want to reach everyone affected by MSA and have them join us here to make our voices even louder next year.  Together, we can make miracles happen for MSA.”

What can you do to help?  Learn about MSA and help spread the word.  Previously known as Shy-Drager Syndrome, MSA affects middle-aged men and women and advances rapidly with a progressive loss of motor skills.  It is very rare for someone to live 15 years with MSA.  One of the common symptoms is stiffness, similar to what’s seen in Parkinson’s disease.  As a result, MSA is considered a “Parkinson’s plus syndrome,” but it does not typically respond to Parkinson’s treatments.

See MSA’s devastating symptoms firsthand – including losing the ability to speak and swallow solid foods – in this moving YouTube video made by the daughter of a MSA patient.  It’s been entered in the 2012 Neuro Film Festival from the American Academy of Neurology, with winners to be announced April 22, 2012.

Today is the fifth annual observation of Rare Disease Day, an international event recognized in more than 50 countries.  (Learn about US activities here, including a day of lobbying on Capitol Hill for the ULTRA Act, which aims to stimulate the development of treatments for rare diseases.)

What’s a rare disease, you ask?  It’s a condition that affects less than 200,000 people in the US – or less than 1 in 2,000 people in Europe.  There are more than 7,000 such disorders (80% of which have identified genetic origins), and collectively, they affect an estimated 350 million people worldwide.  Yet because of the lower prevalence of the individual diseases, they often receive little attention.

The 2012 Rare Disease Day theme is “Solidarity,” highlighting the importance of collaboration and support among patients with rare diseases.  Despite the wide variability of symptoms, patients with rare diseases face many of the same challenges, which may include a difficult diagnosis process, isolation, high cost drugs (if they exist), lack of information and inequities in the availability of treatment and care.

At PatientsLikeMe, we are committed to bringing patients together and speeding up the pace of medical research.  That’s why we partnered with the R.A.R.E Project last November to find and connect one million patients with rare diseases.  “It’s terrifying to think you’re alone and manage your rare illness with a doctor who might not have ever seen another patient like you,” says PatientsLikeMe Co-Founder Jamie Heywood.  “We will change that.”

If you know anyone with a rare disease, please encourage them to join PatientsLikeMe and help create a well-defined patient registry for the benefit of both patients and researchers. Also, PatientsLikeMe members—with or without a rare disease—can show solidarity by following the R.A.R.E Project’s profile.

What kinds of things do we cover in our monthly newsletters for members? Take a look at the excerpt below from our February edition. Also, in case you didn’t know, anyone – whether a PatientsLikeMe member or not – can view our current and past newsletters in our Newsletter Archive. See what we’ve been up to recently, and if you are member who’s not opted in to the newsletter, sign up today.

MONTHLY MUSINGS

Ever feel like you’re so busy seeing specialists that it’s easy to forget about your annual physical?  In addition to checking up on your overall health, an “annual” is a great time to monitor your blood work – such as cholesterol and Vitamin D levels – which you can now record on your PatientsLikeMe profile.  It’s also a good opportunity to discuss any new concerns with your primary care physician (PCP).

But with only a few minutes with your PCP and a whole year’s worth of health matters to cover, it can be hard to remember what’s happened between visits, and even harder to get to everything that’s important. Fortunately, your printable and customizable Doctor Visit Sheet (DVS) can help.  Bring this complete record with you to jog your memory and get your doctor updated quickly.

The DVS now includes your InstantMe history along with all the helpful notes you’ve made about things like treatment changes and new or repeat symptoms.  Bottom line: the more you use InstantMe, the more details you’ll have about how you’ve been feeling – and why.

Are you due for an “annual”?  Customize and print your DVS here.

- Kate, Emma, Liz, Jeanette & Sharry

JOIN THE CONVERSATION

What’s happening in the forum?  Check out some of these active threads below.  Then jump in with your own questions and answers.

• Anyone tried trigger point injections? (Neurological Room)
• Muscles reacting badly to exercise – help! (PatientsLikeMe Room)
• I may look normal, but I feel so alone (Mental Health Room)
• Treatment or no treatment – that’s the question (Epilepsy Room)
• Newly diagnosed and feeling overwhelmed (FM/CFS/ME Room)
• Any ideas for cognitive difficulties? (MS Room)

Need help with something on the site?  Visit the PatientsLikeMe Site Help Room for answers from veteran members.

PUTTING THE “INSTANT” IN INSTANTME

Did you know there’s a mobile version of InstantMe that’s now available for iPhone, iPad and, most recently, Android users? We hope it’s a convenient way to record how you’re feeling on the go – whether you’re in the line at the store or watching your child’s soccer game.  Stay tuned as we continue to improve Mobile InstantMe in 2012.

We first introduced you to E-Patient Dave – a well-known blogger, author and keynote speaker in the healthcare space – last summer.  Given our similar views on many health matters, we see a lot of E-Patient Dave at the conferences and events we attend.  Case in point, our President and Co-Founder Ben Heywood was on a panel with him at the Military Health System Conference just a few weeks ago.

For this particular “high-speed” panel, each speaker was given just 12 minutes to share their story.  So what did E-Patient Dave do?  Exactly what any good digital age citizen would:  he covered the important things and then directed people to his website to find all the related websites and resources.  Given that he’s a cancer survivor and e-patient advocate who believes in “letting patients help,” we were curious what links E-Patient Dave recommends for others who are seeking to take control of their health and join the e-patient movement.

Here’s a sampling of Dave’s top resources along with a brief description:

All About the E-Patient Movement, and Its Founder, Dr. Tom Ferguson (“Doctom”)

• Society for Participatory Medicine, its journal and its blog e-patients.net (the hub)
• Medical Self-Care (pioneering 1985 article by Dr. Tom Ferguson)
• e-Patients as Medical Researchers (key 2002 article by Dr. Tom Ferguson)
• e-Patients White Paper (see Ferguson’s Seven Preliminary Conclusions, Chapter 2)
• Patient Activation Measure (Dave’s article about developing patient engagement)

Other Resources for the Budding E-Patient

• Visible Body (a good start to understanding anatomy)
• Open Notes (a doctor-patient project funded by the Robert Wood Johnson Foundation)
• Peer-to-Peer Healthcare (insightful 2011 Pew Internet independent research report)
• CaringBridge (patient blogs to ease the communication burden during a health crisis)
• GlowCaps (prescription bottle caps that use light/sound to help remind you)

(See Dave’s full list of resources here.)

What about all of you e-patients out there?  Do you have any Internet resources that other patients should know about?  Share your own recommendations in the comments section.

p.s.  In December, E-Patient Dave stopped by our office to talk to the team during our weekly Journal Club luncheon.  Stay tuned for a podcast of what he shared with us.

Last November, we shared our takeaways from TEDx Cambridge, a one-day event featuring 30+ speakers and lots of Ideas Worth Spreading (TED’s mission).  The theme for this particular gathering was “Thrive.”  How can we as individuals – and communities – not just survive but thrive?

One of the speakers to take a crack at that question was PatientsLikeMe Co-Founder and President Ben Heywood, who talked about the story behind PatientsLikeMe.  In addition to sharing how it all began with his brother Stephen’s diagnosis with ALS, and what PatientsLikeMe is trying to do (“a revolution of openness”), Ben focused on how we can thrive as a company against big expectations – both external and internal.

Tune in to the video below to find out just that.  Congrats to Ben on an inspiring talk – not to mention his standing ovation!

Many people look at a new year as a fresh start – a chance to begin new routines, eliminate bad habits and shift priorities.  But not everyone believes in making resolutions.

Here are several different patient perspectives on approaching the new year:

• “In 2012, I will make daily exercise a priority. Research reveals it is the one thing that may slow disease progression. It also improves overall health and makes us look and feel better.”   - Patient with Parkinson’s disease

• “I am filled with great hope for us all. In 2011, the pace of research breakthroughs increased dramatically. Most importantly, new research modalities using human tissue have been developed and are already contributing to major breakthroughs in understanding the biopathways affecting ALS. We are closer to a cure than ever.” – Patient with ALS

• “My resolutions are pretty simplistic:  Sleep hygiene and getting more (sleep, that is). Discontinuing the practice of making long and unrealistic to-do lists.  I’ll start with sleep and go from there.” – Patient with major depressive disorder

• “I have no expectations that this new year will be any better then the last. That way I don’t get disappointed so whatever does happen will be a bonus.”  – Member with Wegener’s granulomatosis

• “I’m going to cut out sugar and white flour foods.  I know, I know, I’ve said this before and I’ve done this before, and it’s really hard for me, but it works for weight loss and being able to tap into my energy.  So here we go again, looking towards a healthier 2012.” – Patient with fibromyalgia

• “My resolution is to do more, no matter what it is.  Smile more, laugh more, cry more, walk more, yoga more, love more, hug more, write more, hurt more, sing more, read more…you get the idea.  I figure more means I’m alive, less may mean I’m dying.” – Patient with Parkinson’s disease

What will you be doing differently in 2012 – if anything?  Share your thoughts in the comments section and read more about exercise, diet and sleep at PatientsLikeMe.

The holidays are a time for thinking about everything you hope and wish for in the coming year.  They’re also a time for appreciating everything you already have.  As our season’s greetings to you, we wanted to share a wish expressed by each member of our management team.

“I wish for every patient and family dealing with illness to know that they are not alone and that we are all in this together.” – Ben Heywood, President and Co-Founder

“I hope Santa brings you all your health data and that you will share it with other patients like you!” – Paul Wicks, PhD, Research & Development Director

“I wish for people to have the most happy, healthy, and joyous holidays filled with the unparalleled love from those who matter in their lives.” – David S. Williams III, Chief Marketing Officer and Head of Business Development

“My wish for patients everywhere is that they continue to learn about their chronic conditions and keep updated on the latest treatments from multiple sources.” – Robert Palladino, Chief Financial Officer

“All of us at PatientsLikeMe wish you and those you love a holiday of joy and grace.” – Jamie Heywood, Chairman and Co-Founder

Happy Holidays!