Say ‘hello’ to Monica. Some of you may know her on PatientsLikeMe as msajstall. She was diagnosed with multiple sclerosis (MS) back in 2005 and has been a member of the PatientsLikeMe community for 6 years now. She recently took some time to talk with us about her diagnosis, finding the right healthcare coverage and the importance of connecting with others.

When were you diagnosed with MS and what changes did you have to make in your daily life?
I was diagnosed in January 2005 after numerous complaints about not being able to feel my legs. I noticed the sensation changes primarily when I walked up stairs. I also noticed that I had lost sensation when I used the bathroom. That particularly scared me, so I went to the hospital and stayed there for 5 days. That’s when the doctors came in and gave me the diagnosis.

I was actually very scared of the diagnosis and I didn’t know much about MS at the time. The doctor did tell me that I would be in the hospital about 5 days more before he would discharge me. At that time, I was not working but I was searching for employment. After finding out, I researched MS along with continuing my job search. After discharge, I noticed how much information was available online dealing with MS and it overtook my job searching.

After you decided to stop working, what challenges did you face continuing your healthcare coverage?
I did not decide to stop working until 2 years after the diagnosis. I decided to get approved for disability through the Social Security Administration prior to leaving the workforce. My neurologist was my number one advocate. Once I applied and the process started, I got approved in 82 days. To me, that seemed like confirmation that I made the right decision. Although I didn’t have long to wait to be approved, it did not make it better for me to accept that Medicare would be my healthcare coverage from age 35 on out. The system was not created to care for 35 year olds and I knew there would be challenges. And boy was that a TRUE thought.

How has an online community like PatientsLikeMe helped you along the way?
PatientsLikeMe has helped me tremendously. When I was diagnosed, the MS community was much smaller than it is today. The forums always seem to really help me. If I have a question, it most likely has already been asked on PatientsLikeMe. I can truly say when I decided to change my disease-modifying drug, there was a whole forum talking about the drug and it really convinced me.

What is one thing you think every MS patients should know?
MS patients must realize that they are not in this fight alone. Besides predominate non-profit organizations dedicated to MS (National Multiple Sclerosis Society, Multiple Sclerosis Foundation, and Multiple Sclerosis Association) there are so many self-help groups that help with things. PatientsLikeMe gives us a voice that can help us to face our problems. PatientsLikeMe makes us feel that we are being heard. I truly appreciate the moderators of the forums and PatientsLikeMe as a whole.

The winter months can mean dry air, less sunlight, indoor heating, and heavy clothing – not the best conditions for people living with psoriasis. As part of our continuing seasonal series, we conducted a
survey of our psoriasis community between October and March, receiving responses from over 500 patients.

We asked everything from, “How does the way you dress for winter affect your psoriasis?” to “Does getting the sniffles or the flue impact your condition?” Members in more than 15 countries responded, signaling our survey is really starting to go global!

The average age of those who responded was 45, with 70% women and 30% men. In response to whether or not getting sick had an effect on their psoriasis, most people (40%) said that it had an effect, 33% said it affected their psoriasis “a little”, while 27% said it had no effect.

To share what we learned, we’ve put together a new Patient Voice report entitled Uncovering Psoriasis. Don’t miss this in-depth look at how our psoriasis patients rated their “skinpact” this fall along with what specific factors can increase it, from age to the location of an outbreak to the percentage of the body covered with itchy, red plaques (a measurement known as the Body Surface Area or BSA score).

Interested in other seasonal psoriasis insights?  Find tips about living with psoriasis during the summertime in our previous report.

Want to connect and learn from psoriasis patients like you?

This week, PatientsLikeMe announced two new appointments to the team: Kim Goodwin and Sally Okun RN. Here Sally, who was promoted to Vice President of Advocacy, Policy and Patient Safety, explains how she’ll continue to make sure the patient voice is heard, collected and disseminated to affect better treatment, services and care. Look for more of Sally in April, when she’ll be the first nurse to grace the stage at 2013 TEDMED in Washington, D.C.

What exactly is patient advocacy?
I like to think of it as actions by individuals, groups or organizations to support the interests and needs of patients across the healthcare system. Patient advocates can be family members or friends, professionals like nurses or social workers or non-professionals, including health coaches and navigators. They can also be nonprofit groups and grassroots activists. For me, patient advocacy is part of my being. It has grown out of my experiences as a nurse and as a family caregiver.

Creating the advocacy role at PatientsLikeMe is a formal step that highlights something we’ve done for years: amplify the voice of our patient members, especially among external groups such as health systems, government agencies and policymakers. We want to continue to drive industry and government to make more patient-centric decisions. It’s never been more important.   

What is your safety focus and how will it impact members?
Our safety focus to date has largely been on side effects experienced by patients when using drugs and medical products. These data are an important contribution to the understanding of how medications work in the real world, outside of the controlled environment of clinical trials.

We’re exploring how best to collect meaningful safety information that matters most to you and other patients, including information about medical devices and equipment, infections, falls in care facilities, and complications that may result from overtreatment. Sharing this information with our members and industry at large can support better decision-making and better outcomes.

Why is your role important to patients?
I have the unique opportunity to bring attention to a variety of topics and issues that our members are concerned about. For example, there have been many changes to the healthcare system as a result of the Affordable Care Act. Prominent among these is the concept called “patient-centered care,” which is being infused into all aspects of care, research and policy development.

My new role gives me access to meetings, discussions and conferences being held around the country and all over the world, focused on the nuts and bolts of putting patient-centered care into action. It is vital to have groups such as PatientsLikeMe present at these meetings. Our real-world perspective is essential if we are to move beyond buzzwords to programs and policies that really matter to you, our patients.

What don’t policymakers know about patients?
Probably the most frequently asked questions by policymakers, clinicians and researchers alike are related to patient engagement and patient activation, considered by many to be “the blockbuster drug of the century.” (see this Health Affairs  piece)  There’s evidence from research studies and demonstration projects that patients who are more engaged in their care and more activated to participate in their care have better outcomes – this can translate into better health for the patient at less cost.

This isn’t news to PatientsLikeMe or you, our members! In fact, our members, who tend to be more engaged and active in their own care, have reported benefits that include improved communication with their doctors, less hospitalizations, improved adherence to medications and better understanding of their condition. Now, that’s real evidence of the power of patients engaging with each other.

How can members be involved in what you do?
Over the past couple of months, I have had the opportunity to reach out to members through our Community Team on a couple of advocacy and policy projects. For example, we recently collaborated with one of our members with MS (LadyMac) for this conference. In the future, I hope to have a place on the website that allows for direct dialogue about current and future activities related to advocacy, policy and safety. It will also be a place where I will circle back with information after attending events, conferences and meetings.

CAMBRIDGE, Mass.— March 19, 2013—PatientsLikeMe appoints Kim Goodwin and Sally Okun RN to two newly-created positions that will keep patient needs upfront as the company continues to enhance its website and drive industry and government to make more patient-centric decisions. Kim Goodwin has been named Vice President (VP) of User Experience (UX) and Sally Okun has been promoted to VP of Advocacy, Policy and Patient Safety.

PatientsLikeMe Co-founder and President Ben Heywood says the appointments underscore the company’s “patients first” mission. “We’ve been committed to understanding and representing patient interests for years. With Kim and Sally in these roles, we’ll be in an even better position to keep patients at the forefront of all we do – from how we develop our website to how we represent patient interests at an industry and policy level.”

Kim Goodwin
In her role as VP of UX, Kim will evolve the information and structure on www.patientslikeme.com to help people live better lives with their conditions. She plans to expand member involvement in the website development process to improve usability and to make sure the website’s content answers their most important questions. She will also make it easier for members to find and connect with people who share not just the same condition, but the same values and experiences. Additionally, Kim and her new team will improve how researchers and providers conduct research and interact with members on the site.

Kim’s expertise in design has made her one of the most distinguished UX experts in the world. She is a frequent speaker and the author of the 2009 bestseller Designing for the Digital Age, which is heralded as the most comprehensive how-to guide in the field. Before joining PatientsLikeMe she was VP of Design and General Manager at California-based design firm Cooper. Over the years, Kim has also worked with clients including Lexus, Cardinal Health, Abbott, Medtronic Diabetes, Boeing, Cisco, and Best Buy. Her healthcare experience includes work for companies delivering diagnostic and treatment devices, consumer health education and tracking, and desktop and tablet-based electronic medical records.

Sally Okun
As VP of Advocacy, Policy and Patient Safety, Sally plays a vital role in ensuring the patient voice is heard, collected and disseminated to affect better treatment, services and care. As the company’s liaison with government and regulatory agencies, she will bring the patient voice to worldwide healthcare discussions and educate policy makers on the benefits of sharing health data. Previously, she developed the company’s drug safety and pharmacovigilance platform, which monitors patient data for potential adverse events. In this new role, Sally will continue to expand the website’s drug safety content and ensure the data collected about treatments and their impact become more transparent to the community at large.

Recently named a 2013 TEDMED speaker, Sally joined PatientsLikeMe in 2008 and led the team responsible for the website’s medical ontology and curation of patient-reported health data. She has since been a frequent speaker at policy workshops and forums and has contributed to peer reviewed publications and discussion papers for the Institute of Medicine (IOM) and others. She also co-authored a chapter for Health Informatics: An Interprofessional Approach, an upcoming Elsevier textbook. A registered nurse for over three decades, Sally’s clinical practice specialized in palliative and end-of-life care. In that time she also participated in numerous clinical, research, and educational initiatives of national significance.

About PatientsLikeMe
PatientsLikeMe is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers and nonprofits develop more effective products, services and care. PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 30 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us on our blog, on Twitter or via Facebook.

It’s been a busy couple of weeks at PatientsLikeMe.  Here are a few media highlights showcasing all the exciting things that are going on, from new partnerships with Aetna and Boehringer to the major grant we were awarded by the Robert Wood Johnson Foundation to TED2013 Fellow Paul Wicks’ presentation at TED2013 last week.

PatientsLikeMe Is Building a Self-Learning Healthcare System
(Forbes)

Social Network Could Revolutionize Disease Treatment
(Wired)

PatientsLikeMe Leads Crowdsourcing for Patient Outcomes
(Fierce Biotech IT)

What the NHS Can Learn from Innovative Health Practices Abroad
(The Guardian)

Boehringer Partners with PatientsLikeMe on Rare Disease Community
(PMLive)

Networking Medicine: Patients Take a More Active Role in Science
(The Scientist)

PatientsLikeMe:  Crowdsourcing Healthcare
(AllVoices)

For more PatientsLikeMe media coverage, visit our Press page.

Valentine’s Day is all about showing your love for your significant other.  But what if it were also about showing your love for perfect strangers?

February 14th is National Donor Day, a day of awareness about how registering to be an organ donor can give someone a second chance at life.  Does your driver’s license currently indicate that you are a donor?  If not, and you’d like your organs (as well as potentially your tissues, marrow, platelets and blood) to help someone else after you are no longer here, sign up to be a donor today.  In the time it takes you to register, someone with a life-threatening condition will be added to the waitlist.

Wondering if your registration will really make a difference?  Here are a few statistics that help underscore the need for more donors:

• 117,001 people are currently waiting for an organ transplant
• 18 people will die each day while waiting for a new organ
• 1 organ donor can save up to eight lives total

In particular, there is a need for more minority donors.  While organs are not matched according to race/ethnicity, there is a greater likelihood that compatible blood types and tissue markers – the critical elements of the matching process – will be found among members of the same ethnicity.  Thus, a greater diversity of donors could potentially increase access to transplantation, which is essentially the only treatment for end-stage organ failure (e.g. kidney failure, heart failure, liver failure).

Are you awaiting an organ transplant – or the recipient of one?  Join PatientsLikeMe to connect with others like you.  We have thousands of transplant patients among our members, including those with (or still awaiting) a heart transplant, kidney transplant, liver transplant, lung transplant and pancreas transplant. What’s it like to go through organ transplantation? Read our in-depth Patient Voice report on “Life After a Transplant” as well as our insightful interviews with liver transplant recipient Amy Tippins and kidney transplant recipient Michael Burke.

We are all too aware that Parkinson’s disease (PD) is a progressive illness, with tremors, difficulty walking and other symptoms usually getting worse over time.  Here at PatientsLikeMe, and in the clinic, that progression is measured with the Parkinson’s Disease Rating Scale (PDRS). Although you can never really simplify a whole disease down to a few numbers, having that numerical description helps your health care team track your disease and how you are doing over the long haul.

But if you or a loved one has PD, you know that a decline over time is only part of the story. You probably have good days and bad days, depending on all kinds of factors. Understanding those ups and downs is also big part of living with PD. It may also be a big part of treating it.

In collaboration with PatientsLikeMe’s Paul Wicks and MIT’s Max Little and Alex Pentland, I have been studying those ups and downs. In our freely available paper recently published in the Journal of Medical Internet Research, we explored mathematically the dynamics of the PDRS. (If you love math, this is the paper for you!)

One of the most important things we found is that these random fluctuations seen in many patients are large enough that they can be considered “clinically meaningful” – just as big as those long-term progression changes that doctors and nurses consider when they think about what treatments may be best for you. So, it is especially important for your team to know how you’ve been doing over the last few weeks, and not just today.

Knowing your own ups and downs may help you figure out your best possible treatment plan. We also hope that by studying the data shared by lots of people like you, we can understand PD better, which will ultimately lead to better treatments for everyone. As always, thanks for sharing!

p.s. For those of you keeping up, yes, the Max Little mentioned above is the very same applied mathematician we’ve partnered with to help advance his groundbreaking research at the Parkinson’s Voice Initiative.  Don’t miss this recent CNN profile of Max’s exciting project, which is based on the theory that the voice (as recorded via a simple phone call) can be used as a biomarker for PD progression.

In an ongoing effort to raise awareness, the Rheumatoid Patient Foundation (RPF) has now established February 2nd as Rheumatoid Awareness Day. This is the first time ever that a day has been designated for rheumatoid disease and it will give a voice to the millions who are living with this condition.

Rheumatoid disease (also known as rheumatoid arthritis) affects nearly 2 million people in the U.S. and one percent of people worldwide. It’s a progressive inflammatory disease causing joint and organ damage that can lead to severe pain and joint disabilities. Studies have also shown that rheumatoid disease has an impact on the heart causing higher incidence of stroke for patients.

Want to get involved? The RPF is hosting several social media events and is asking everyone to share educational materials via social sites and blogs to raise awareness.

You can also connect with other rheumatoid arthritis (RA) patients just like you on PatientsLikeMe. Nearly 5,000 RA patients are tracking their health and learning from each other’s shared experiences every day. Add your voice to this growing community.

It’s no secret that being overweight comes with health risks like diabetes, high blood pressure, high cholesterol, stroke and heart attack. After a new study, researchers from Northwestern University School of Medicine in Chicago are closer to adding psoriasis to the list. However, the study did not conclude if psoriasis influences obesity or visa versa. It’s still a bit like asking, ‘What came first, the chicken or the egg?’ Here are the facts of the study:

• 409 children with psoriasis (ages 5-17) from nine countries participated
• Children with psoriasis were twice as likely to be overweight
• Obesity risk for children increased despite their psoriasis being mild or severe

According to Dr. Amy S. Paller, Chair of Dermatology at Northwestern Medicine, “one-third of all psoriasis cases start in childhood.” If there is a metabolic link between the two conditions, having a healthy lifestyle earlier on could prove important to managing not only weight and cardiovascular health, but psoriasis as well.

What are your thoughts on this? Add your voice to the forum thread that your Community Moderator Molly started.  Join the conversation.

You can find the entire text of the study here.

Welcome to the latest installment of our “Spotlighted Blogger” series.  Earlier this year, we focused on psoriasis bloggers, including Lissa, Alisha B., Jessica and Joni, and today we’re pleased to add a male perspective to the mix.  PatientsLikeMe member Simon’s witty blog, entitled My Skin and I, discusses his decade-long battle with psoriasis, a chronic autoimmune condition that can cause itching, rashes and plaques.  What has he learned along the way?  Find out that and more in our interview.

1.     Why did you start blogging about psoriasis, and what’s the reaction been?

I started blogging as a way to vent my feelings. I don’t really talk about my feelings, even to my family, and found it very hard to explain what was going on in my head and in my life.

When I spoke to people about psoriasis, I kept a lot back and, to write it, even if I hadn’t published it, was a release. I decided to make it public partly as I needed my family to understand what I had been going through and also to help raise awareness.

The reaction has been positive.  I have been told I made a few people cry and even had other friends suddenly announce they also have the condition. This showed me that I wasn’t alone and that there are many people that feel the same way and hide their emotions. I am quite pleased that I haven’t had much in the way of sympathy as that’s not why I started the blog.  The worst thing is people saying, “you poor thing.”

2.     You write about your “war with psoriasis.” Are you winning these days?

Ask me this question on different days and I might answer it differently each time. I would say generally yes, although I have lost a few skirmishes lately. The last couple of months have been extremely stressful due to personal and work issues, which hasn’t helped, and psoriasis clings on to moments like that. Also, with the cold weather in the UK at the moment, especially with the sudden freezing weather, my skin is quite sore and dry despite using my creams.

My skin is still at a manageable state, though, and even though it has got a little worse over the last week, it’s nothing I can’t handle. I just have the slight wobble, then think of Christmas coming, and there has been plenty going on lately to keep my mind occupied. The dark space that psoriasis occupies in my head is quite small at the moment.

3.     You recently joined PatientsLikeMe. What’s your impression thus far?

My first impression is good. I haven’t been that active on the site but then I haven’t done much on the blog either recently, or on my food blog that I also write, purely because I’ve been so busy. The people I have come into contact with through the site have all been positive and friendly, which is great. There is a time when the purely psoriasis groups/sites get a bit depressive, and I find myself backing away.

Psoriasis does seem to bring a lot of anger with it, and I quite understand that.  I just wish my fellow sufferers were a bit friendlier to each other now and then. And there are some who are brilliant; in fact, you have interviewed a few already. It is quite sobering to read what others go through, and this helps me get some perspective on my own condition.

4.     What advice would you give someone who’s newly diagnosed with psoriasis?

I would say make sure you see your doctor (GP here in the UK) and ask for a referral if you think your skin is bad enough. Find one of the many supports sites, like this one, which can measure your severity. But if the doctor can’t seem to help you, ask to be referred no matter how bad your skin is. Also persevere with the medication, as your skin is very unique to you and, just because one treatment works for one person, doesn’t mean it will work for you. Give them time to work and, if there’s no response, try something else.

The other thing is to talk.  It doesn’t have to be to your family or anyone close. The most important person is your doctor – don’t just show them your skin, tell them exactly how it makes you feel. If you can’t tell anyone, then write it down. There are many support networks out there with people who have the same condition and who will understand what you are going through. One last thing:  do not give up the fight.

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Want to hear how other psoriasis patients are dealing with dry air, cooler temps and other seasonal changes?  Check out our recent Patient Voice report on coping with psoriasis in the fall.  Also, find all of our blog coverage of psoriasis here.

Want to connect with and learn from psoriasis patients like you?
Join PatientsLikeMe Now! (It’s free)

How do people with psoriasis cope with the drier autumn air? Do they drink more water, use a humidifier in their house or intensively moisturize with a favorite lotion? This was just one thing we set out to discover in our seasonal survey of more than 300 members with psoriasis, a chronic autoimmune condition.

The average age of those who participated was 43, with 74% female and 26% male. What did they have to say? In response to the best way of dealing with the drier air, an overwhelming 71% said, “moisturize, moisturize, moisturize.” 27% agreed that drinking more water was the most effective way to keep your whole body hydrated, and only 2% said that humidifiers worked for them.

We also asked how psoriasis affects quality of life, including social activities, sports, personal relationships and more. These important lifestyle factors were captured using the Dermatological Life Quality Index (DLQI).  Internally, PatientsLikeMe refers to DLQI ratings as a person’s “skinpact” because it quantifies how much of an impact psoriasis can have on your lifestyle.

To share what we learned, we’ve put together a new Patient Voice report entitled Uncovering Psoriasis. Don’t miss this in-depth look at how our psoriasis patients rated their “skinpact” this fall along with what specific factors can increase it, from age to the location of an outbreak to the percentage of the body covered with itchy, red plaques (a measurement known as the Body Surface Area or BSA score). Also, discover how many of our respondents get annual flu shots.

Interested in other seasonal psoriasis insight?  Find tips about living with psoriasis during the summertime in our previous report.

Want to connect and learn from psoriasis patients like you?

TED Fellows Call on Parkinson’s Patients to Help Screen, Monitor Disease Progression

CAMBRIDGE, Mass. — December 3, 2012 —Today, Paul Wicks Ph.D., director of research for PatientsLikeMe, and Max Little, Ph.D., founder of the Parkinson’s Voice Initiative (PVI), kick off a partnership to advance Parkinson’s disease (PD) research through the sound of the patient voice. The two TED Fellows, whose collaboration was recently highlighted on CNN’s “The Next List with Dr. Sanjay Gupta,” are calling on PatientsLikeMe members to record their voices and update their own health profiles to keep track of their disease status.

PatientsLikeMe and PVI have joined forces to further validate Dr. Little’s discovery that the voice can be used as a biomarker for disease progression. Dr. Wicks says, “If Max’s work proves out, this could mean that the cell phones we all carry may be the key to the best biomarker for Parkinson’s disease. The project could also lead the way in lowering the cost and accelerating the discovery of the next generation of treatments. It’s an honor to collaborate with Max and our patients on such transformative work.”

PD is a progressive disorder of the nervous system affecting 6.3 million people worldwide. In a recent TED talk, Dr. Little explains it’s expensive and time consuming to detect the disease early on, and nearly impossible to objectively measure the disease’s progression outside of clinical trials. Through a simple phone call, Dr. Little is testing if the tremors in a voice can be used to diagnose, measure and even assess the effectiveness of PD treatments.

Dr. Little adds, “Voluntary patient registries like the one Jamie Heywood and his team have pioneered are becoming crucial for researchers like me to accelerate and transform discovery. Our work with PatientsLikeMe will help us further validate our research by giving PVI access to more people, and more information, in real time.”

PVI has combined a digital microphone, precise voice analysis software and the latest advances in machine learning to create an unconventional method for automatically screening and monitoring PD. To learn more about the PVI and PatientsLikeMe, visit www.patientslikeme.com/join/pvi.

About PatientsLikeMe
PatientsLikeMe is a patient network that helps improve lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers and nonprofits develop more effective products, services and care. PatientsLikeMe has become a trusted source for real-world disease information and a clinically robust resource that has published more than 25 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

We are thrilled to announce that PatientsLikeMe Research & Development Director Dr. Paul Wicks, PhD, has been named a TED2013 Fellow.  He is one of 20 individuals to be selected from more than 1,200 candidates to attend the TED2013 conference in Long Beach, California, participate in a preconference bootcamp and receive mentoring from the TED community.

If you’re not familiar with it, TED is a nonprofit devoted to Ideas Worth Spreading.  It started out as a conference designed to bring together people from Technology, Entertainment and Design (T-E-D) and has since evolved into a global movement for sharing big ideas.  In addition to annual conferences in the US and UK (TEDGlobal), which bring together movers and shakers for inspiring talks of 18 minutes or less, TED sponsors local events (TEDx) and shares many of its videotaped talks via TEDTalks and TEDxTalks. (Among them: a 2009 talk by PatientsLikeMe Co-Founder Jamie Heywood, a 2010 talk by Paul Wicks and a 2011 talk by PatientsLikeMe Co-Founder Ben Heywood.)

The theme for the TED2013 conference is “The Young. The Wise.  The Undiscovered.”  Accordingly, this year’s class of TED Fellows represents “young innovators from around the globe, all with insightful, bold ideas that have the potential to influence our world.”  Paul is a perfect fit for this mission, having already been named one of the best young innovators under the age of 35 by MIT’s Technology Review as well as their “Humanitarian of the Year” in 2011.  We know he won’t stay “undiscovered” for long!

A big thanks goes to TEDGlobal 2012 Fellow Max Little, who nominated Paul for this prestigious opportunity.  An applied mathematician who is currently a Postdoctoral Research Fellow at MIT, Max is working on a breakthrough technique to monitor – and potentially screen for – Parkinson’s disease through simple voice recordings.  Learn more about Max’s ingenious idea in his June 2012 TEDTalk below and stay tuned for more coverage of this trailblazing researcher in the coming weeks.

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.