42 posts tagged “parkinson’s”

Cannabis for PD treatment? Member Ian says it’s something to shout about

Posted June 15th, 2017 by

Member Ian (Selfbuilder) blogs and vlogs about using cannabis products to treat his Parkinson’s disease symptoms, even though marijuana (including medical marijuana) is illegal and stigmatized where he lives in the U.K. Why is he speaking up? “I know that I would not be here now if it wasn’t for the relief provided by my medicinal cannabis,” he says.

Parkinson's and cannabis

Tremors “through the roof”

Ian has been living with Parkinson’s disease symptoms since the mid-1990s. At one point, his tremors were “through the roof,” he says. He experienced severe side effects while on prescription medications for PD – including nausea, acid reflux, heartburn and irritable bowel syndrome that kept him from sleeping and worsened over time. He searched online for natural relief for tremors and Parkinson's and cannabisread accounts of people successfully treating their PD symptoms with different forms of cannabis. “I tried a little and was amazed at the effect it had,” he said

The U.K. has approved one cannabis-based treatment as a prescription medication for multiple sclerosis, called Sativex, but marijuana itself is not legal as a treatment for PD or other conditions. The U.S. FDA has not recognized or approved marijuana as medicine and says the purity and potency of it can vary greatly. Neurology experts like the National Parkinson Foundation say more research is needed on medical marijuana as a treatment for PD because studies have been inconclusive so far, and it can even be harmful for some patients with mental health or psychological symptoms.

Ian says his doctors are aware of the potential benefits of cannabis as an alternative treatment for Parkinson’s but declined to prescribe it because it’s not licensed as a PD treatment in the U.K. So Ian has sourced cannabis products on his own and chronicled his positive experiences on his personal blog and YouTube channel, and – in the spirit of openness – here on PatientsLikeMe.

Going viral

Ian’s initial video about his tremor control using cannabis went viral (with more than 45 million views online), and a Polish medical marijuana website contacted him with a box full of cannabidiol (CBD) products to try. He admits he was “initially skeptical” but ended up being pleased with the relief CBD products offer him. So he added reviews of medicinal cannabis products like Charlotte’s Web and Olimax CBD oils and CBD tea to his vlog.

Parkinson's and cannabis

 

Ian’s reviews resemble a cooking show – with ingredients like solid CBD oil mixed with coconut oil in a saucepan, melted down and then solidified and eaten.

 

For Ian, CBD oil helps alleviate tremors, anxiety and dystonia in his feet, and the effects last four to eight hours.

What’s cannabidiol, or CBD? It’s a compound found in cannabis known to have milder psychological effects than (whole-leaf) “street” marijuana. Cannabidiol is one type of a cannabinoid – the chemicals in cannabis plants that may be responsible for the various effects of marijuana. Just to break it all down: there’s cannabis (the plant), cannabinoids (the name for all chemicals in the plant) and cannabidiol (the specific cannabinoid found in the products Ian uses).

Many CBD products come from hemp plants and are very low in THC (the mind-altering cannabinoid, primarily responsible for the high associated with marijuana use). Ian says the CBD oil he uses contains less than 0.2% THC, in compliance with European Union laws. (Read up on both state and federal U.S. laws here.)

News outlets in the U.K., including Metro and BBC Radio (pictured below), have picked up Ian’s story about treating Parkinson’s with cannabis.

Parkinson's and cannabis

Cannabis treatments got him through his hardest time with PD, when he couldn’t tolerate prescription drugs and wasn’t sure if he was a candidate for deep brain stimulation (DBS).

“I was able to get some relief from medicinal cannabis, which made life tolerable,” he says, noting that the side effects of CBD include a mild high (which he considers undesirable) and increased tiredness (beyond his usual PD-related fatigue).

DBS journey

Ian ultimately learned that he was a good fit for DBS, and he had his implantation surgery in April 2016. His blog (called “DBS – A Complete No Brainer”) follows his DBS experience, from his surgery and recovery to the day-to-day “challenges and victories.”

He currently doesn’t take any prescription treatments for PD. Now that he’s had DBS surgery, he still uses cannabis products to alleviate his symptoms “when the DBS needs some assistance.” He says having DBS hasn’t changed the effects of CBD products he uses, for better or worse.

“Other people may not get the relief from medicinal cannabis that I do – everyone is different and everyone’s PD is different,” he says. “Talk to your doctor about it. Many are open to discussion. The PD meds are well tolerated and effective for many PD sufferers, but not for me.” As always, talk with your physician before starting any type of new treatment.

 

Addressing the stigma

Ian says medical marijuana use isn’t as socially accepted in the U.K. as it is elsewhere. “I believe there is less of a stigma, and wider acceptance of its use as a medicine, in other European countries,” he says. “People are slowly waking up to it, though, so it will hopefully become a more mainstream treatment in the not-too-distant future.”

BBC News reports that medical marijuana is gaining support among doctors and politicians in the U.K., amid concerns about falling behind other countries.

Ian plans to continue spreading the word about cannabis treatments. “I am open about sharing my experiences because it could help others in the same situation as me,” he says.

 

“I believe that it is important that this plant is legalized for medicinal use, and that will never happen if those who benefit from it don’t shout about it!”

 

On PatientsLikeMe

A 2015 survey of more than 200 members with certain conditions who use medical marijuana found that:

  • 74% believe it is the best available treatment for them, with fewer side effects than other options and fewer risks
  • 93% say they’d recommend medical marijuana treatments to another patient
  • 61% said their healthcare provider is supportive of their medical marijuana use

See how many members report using cannabis or medical marijuana and for what symptoms or reasons. Members of the PD community have reported using various forms of cannabis to help treat symptoms such as pain, stiffness/spasticity, muscle tension/dystonia and restless legs syndrome.

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Virtual house calls? Dr. Ray Dorsey’s promising research on telemedicine for Parkinson’s disease

Posted June 2nd, 2017 by

What if your next doctor’s appointment involved just booting up your laptop rather than trekking to a clinic or office? Neurologist Ray Dorsey, M.D., M.B.A., is making virtual house calls a reality for people with Parkinson’s disease (PD) and believes “telemedicine” is on the brink of transforming healthcare. “There’s a huge demand for more convenient care,” he says.

Dr. Ray Dorsey PD Telemedicine

What’s telemedicine? Why does it work for PD?

Telemedicine, also called telehealth, is the delivery of healthcare remotely via phone, smartphone, mobile wireless device or other tools with or without a video connection.

Dr. Dorsey, a professor of neurology and the director of the Center for Health and Technology at the University of Rochester Medical Center, has been studying and providing telemedicine for more than a decade – starting with people with PD in a nursing home in a remote part of Central New York. He says virtual visits work particularly well for PD because it’s a visually-assessed condition.

Also, due to geography, physical limitations and other factors, more than 40 percent of people with PD do not see a neurologist – putting them at greater risk for falls, hip fractures and other complications – so there’s ample opportunity to improve care.

Dr. Dorsey’s research findings

In a 2013 pilot study on telemedicine for PD, Dr. Dorsey and his colleagues found that patients who received virtual house calls:

  • Spent an average of 53 minutes per call (using technology similar to Skype)
  • Saved 4+ hours – plus gas/travel money – for each appointment (compared to the 255-minute average time spent per in-person visit and travel)
  • Felt just as well about their quality of life and level of care as patients who attended in-person visits during the seven-month study

Building on the findings of the pilot involving 20 patients, Dr. Dorsey turned to PatientsLikeMe and other organizations to help recruit about 200 patients for a larger study called “Connect.Parkinson” – which resulted in similar positive findings. In fact, patients receiving virtual care rated their care more highly than those receiving in-person care, with 90 percent of patients saying they were “satisfied” or “very satisfied.”

 

“The biggest perks? Patients found care, convenience and comfort in virtual house calls.”

In patients’ own words:

“Excellent – just wish these visits could continue.”

“The regular intervals of seeing my neurologist through a virtual visit allowed my neurologist to treat more of my symptoms that emerged gradually… I do not have that kind of awareness of how my PD is gradually changing in one-a-year visits with my regular neurologist.”

“As my wife and I live a long way from the nearest neurologist, this technology is a blessing.”

“I really felt comfortable and did not feel like I was missing anything crucial by not being there in person. It’s so nice to not have to get in the car to go to an appointment!!”

Six-foot-5-inch Dr. Dorsey says meeting with him over a web cam – where he’s seated and not wearing his clinical lab coat – “levels the playing field.”

“If you come see me in a clinic, you would be clearly be on my turf. When you see me from your home, if you don’t like me, you can just close your computer,” he jokes.

The future of telemedicine

From the get-go of Dr. Dorsey’s latest study, it was clear that there’s a growing demand for telemedicine. Most clinical trials take a while to recruit for, but not “Connect.Parkinson.” The trial page received 11,000 visitors from all 50 states and more than 80 countries, and the study was quickly at capacity. 

 

“We were actually overwhelmed by the interest,” Dr. Dorsey says, “I think there’s just a huge demand in the community to receive care from home.”

 

Virtual visits aren’t for every patient – or provider, Dr. Dorsey says, noting there’s a learning curve, technical glitches, personalities and some privacy concerns to consider. Also, virtual care shouldn’t be a substitute for in-person visits but work well as a complement to them, for example, in the months between annual checkups.

While telemedicine might become a go-to for things like PD, skin conditions, and mental health issues, it probably isn’t a great fit for conditions requiring regular lab work and face-to-face evaluation, such as lupus or cardiovascular disease. But Dr. Dorsey believes it’s poised for exponential growth as more patients and politicians (who are always budgeting for Medicare) catch onto its perks.

 

“With time, I think more people are going to say, ‘I shop online, I bank online – why can’t I get healthcare online?’”

-Dr. Dorsey.

Free telehealth for New Yorkers with PD

As part of Dr. Dorsey’s work in expanding telemedicine, anyone with PD in New York State can receive care for free through a program called Parkinson’s Disease Care New York. Get the details at pdcny.org. He hopes the program can be replicated in other states – and for other conditions – in the future.

See what PatientsLikeMe members with PD are saying about telemedicine.

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“It gives me a source of hope”: Gloria’s 9+ years of tracking Parkinson’s disease and making connections on PatientsLikeMe

Posted May 24th, 2017 by

Member Gloria (sunshine221) has been here almost since the start. The Parkinson’s Disease (PD) community on PatientsLikeMe launched in 2007, and Gloria joined in 2008. We recently caught up with her about her early days with PD, how she has used PatientsLikeMe through the years and what she’s up to now.

Early days with PD and finding PatientsLikeMe

Gloria had been dealing with walking problems for four years, and was initially diagnosed with spinal stenosis. After having surgery for that, she was diagnosed with PD. She had to shift gears, in terms of finding support online.

“Another web board that I was using was great for the spinal stenosis but their Parkinson’s section was inactive,” she says.

 

“I liked PatientsLikeMe’s tracking sections and how it matched with what the doctors were asking.”

 

Gloria notes that HIPAA laws made it harder for doctors to connect patients with each other, so meeting people with PD online (and in in-person support groups) was key.

“PatientsLikeMe lets me share with people of similar age and illness progression, and when I might be feeling discouraged it gives me a source of hope,” she says.

Using PatientsLikeMe through the years

Early on, Gloria turned to the website for members’ drug evaluations (noting some frustration over the delay in being able to track Rytary XR – but that is possible now). Over time, she has used the site for tracking her own condition and helping others who’ve joined the community.

“I often look back at the historical data – sometimes it’s frustrating, other times encouraging,” she says. “I mostly look at my own data but if I’m trying to answer another poster’s question, I might look at their data to see what else might be happening with them.”

She has used her data to help people offline, too, including at her support groups. The wife of a local retired dentist with PD needed more information about the condition.

“So I gathered literature from my file and brought it up to her yesterday,” Gloria says. “This just shows that people from all backgrounds need education and support.”

Meanwhile, Gloria has continued to make strong friendships through the forums.

 

“The regular posters come to feel like family.”

 

Gloria says she has met up with fellow PatientsLikeMe members at the World Parkinson Congress in Montreal (2013) and Portland, Oregon (2016).

What’s she up to these days?

“It’s been over 10 years that I’ve had Parkinson’s,” Gloria says. “Looking back, I’ve been lucky that the progression has been slow.”

Gloria and her husband recently retired but continue to do some consulting work. They divide their time between their home in upstate New York, a winter home in Florida and a family retreat in the Catskill Mountains. She travels, exercises, maintains a personal blog, and even exhibits her work in art shows (top photo).

“My mantra is ‘use it or lose it,’” she says. In addition to encouraging others with PD to exercise and stay active, she also recommends: using a movement specialist, keeping legal documents (will, power of attorney, and healthcare proxy) in order, and educating adult children about the condition and its possible long-term progression.

Gloria fears her condition will get worse and her grandkids could be afraid of her PD (because she witnessed this with an aunt who had ALS), but she remains hopeful.

What brings her the most joy? “Spending time with friends and family, and watching my 2-year-old granddaughter learn – and hoping that there will be more grandchildren to come in the next few years.”

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“My expertise is as a person with Parkinson’s”: Member Lisa brings the patient voice to drug development

Posted April 28th, 2017 by

Member Lisa (lcs), a Team of Advisors alum who’s living with Parkinson’s disease, has found her advocacy niche: involving patients in drug development.

Parkinson's Disease patient

Lisa Cone, PatientsLikeMe member living with PD

Diagnosed with PD in 2008, Lisa served as a patient thought leader and co-author of a published journal article called “Increasing Patient Involvement in Drug Development.” She worked on the publication along with Maria Lowe, Pharm.D. – a health data and drug information clinical specialist at PatientsLikeMe – and other pharmacists and Ph.D.s.

“I hold my co-authors in the highest regard,” Lisa says. “That said, not one of them was a person with an incurable, progressive neurodegenerative disease. My expertise is as a person with Parkinson’s.”

 

Maria says that having a patient co-author was “crucial” to the publication. “We wanted to look at how drug developers were incorporating patients into drug development activities and recommend some best practices,” Maria says. “How could we possibly do this without ensuring we were representing what matters to patients?”

The value of partnering with patients

In addition to teaming up on the research paper, Lisa and Maria also both participated in a webcast on April 12 on PDUFA VI and the Patient Voice.

PDUFA stands for the Prescription Drug User Fee Act, which the U.S. first enacted in 1992 to allow the FDA to collect fees from pharmaceutical companies to help fund the FDA’s drug review and safety monitoring processes. PDUFA VI, the pending update to the legislation (up for renewal in September 2017), would require drug developers to include more of the patient perspective in the early stages and overall process of drug development. (Read more about it here.)

Maria Lowe

Maria Lowe, Pharm.D., health data and drug information clinical specialist at PatientsLikeMe

Lisa says that the FDA has been trying to drive a higher level of patient participation in the trial process and the drug approval process. New leadership and budget changes in Washington could shift or delay the FDA’s focus on patient-centeredness, but Lisa still has a message for pharmaceutical industry leaders:

“I urge you not to confuse the value of partnering with patients with the requirement to partner with patients.”

 

But she adds that low participation in trials often stems from problems in the study design from the get-go. Involving patients early and often in trial design and drug development can pay off big time, Lisa says. “The time and resources it takes to bring a single new therapy to market are significant,” she says. “Because of this investment, failure to assess the needs of patients early in the development process can mean marginal success or frankly disastrous results when taken to market.”

On becoming a patient thought leader, plus a few pointers

Lisa had professional experience in the healthcare field — before leaving the workforce, she was an executive responsible for understanding the business of and policies affecting healthcare providers.

“I do not, however, believe that these experiences are required to be an effective advocate. I believe having knowledge of your condition beyond your personal experience is the primary requirement, which is not complicated,” she says.

On PatientsLikeMe, 23,512 patients say they’re interested in advocacy. Lisa’s advice? Find a “role that most suits your gifts,” such as fundraising, lobbying or speaking. She also puts her her physical and emotional health first. “This means taking time to relax, play with my dog, visit with friends and family and getting physical activity,” she says. “I’m not always successful in this endeavor as I have a tendency to ‘over volunteer.’”

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Could the Rolling Stones be part of Parkinson’s disease management? (Check out Pamela Quinn’s blog)

Posted April 26th, 2017 by

It’s Parkinson’s Awareness Month, and we’re continuing to find meaningful stories in the world of PD. Did you tune into our recent podcast featuring Pamela Quinn – a professional dancer who’s living with Parkinson’s? She teaches dance classes in New York City for people with PD. Now, she’s taking her dance and movement tips to a broader audience online in a cool new blog (psst – Rolling Stones fans, read on…)!

Pamela Quinn Parkinson's

Some members have noted in the PatientsLikeMe PD forum that they’ve attended and benefited from dance classes for people with PD (even ones that reference Pam’s teachings!). But what if you have PD and live where classes like this aren’t available – or if dance classes just aren’t up your alley? Check out Pam’s blog, PD Movement Lab.

Songs to step to

Pam uses visuals, like photos and videos, in a series of mini-lessons for moving and walking with PD. In one of her first posts, she shows how walking to music can make a big difference, and offers a playlist of her favorite songs to walk to at varying tempos, including:

  • “Fever,” Peggy Lee (68 beats per minute)
  • “Clarinet Concerto in A Major,” Mozart (94 bpm)
  • “Moon Rocks,” Talking Heads (124 bpm)
  • “Brown Sugar,” Rolling Stones (129 bpm)

(Hint: You can find out the tempo of your own favorite songs using this neat BPM calculator, and then create your own playlist.)

“We can put it back together”

Pam’s blog is all about empowering people with PD to keep moving, although she knows first-hand that it’s not easy (she has lived with PD for more than 20 years).

Dancing for Parkinson's

“Why are we breaking a walk down into all these bits and pieces?” she says in her latest blog post (about arm swing – featuring Judy Garland). “It’s because with Parkinson’s, we lose the ability to move unconsciously. But if we understand how things work, we can put it back together. It may require a conscious effort but at least we have the opportunity to move with coordination, fluidity, skill and awareness.”

Do you have any tips for moving or walking with PD, or favorite songs that keep you moving? Make a comment below!

On PatientsLikeMe, dozens of patients have reported trying various forms of dance to help manage their condition. Take a look.

A note from Pam: The content of this post is intended to provide experiential advice from a fellow patient about ways of moving to help manage your PD. It is in no way intended as a substitute for medical consultation. Be sure to check with your healthcare provider before engaging in any new exercise program. Pamela Quinn or PD Movement Lab will not be responsible for any injury or harm you sustain in performing any exercises or following any advice presented here in. 

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PatientsLikeMe Welcomes Next Patient Team of Advisors

Posted November 14th, 2016 by

 

CAMBRIDGE, Mass, November 14, 2016PatientsLikeMe has named 11 members to its patients-only 20162017 Team of Advisors, which this year will focus on elevating the patient voice. Team members will share their stories, participate in community initiatives, and give real world perspectives to our industry and research partners.

“Each year, our Team of Advisors has proven an invaluable source of inspiration and support for the PatientsLikeMe community,” said PatientsLikeMe CEO Martin Coulter. “We look forward to learning from this year’s team as we partner to identify how we can change healthcare for the better.”

More than 500 PatientsLikeMe members submitted applications for this year’s Team of Advisors. Those selected represent a range of medical and professional backgrounds and ages. They are living with a cross-section of conditions, including amyotrophic lateral sclerosis (ALS), autonomic neuropathy, bipolar disorder, epilepsy, fibromyalgia, idiopathic pulmonary fibrosis (IPF), lung cancer, lupus, multiple sclerosis (MS) and Parkinson’s disease. Members named to the team include: Cris Simon, Gary Rafaloff, Ginny Emerson, Glenda Rouland, Hetlena Johnson, Jacquie Toth, Jim Seaton, John Blackshear, Kimberly Hartmann, Laura Sanscartier and Lindsay Washington.

John Blackshear is living with multiple sclerosis (MS) and looks forward to the opportunity to share his story with others, and collaborate with PatientsLikeMe and other members of the Team of Advisors. “My experience with PatientsLikeMe has been filled with exploration, information and conversation. My health journey has been positively impacted through my connection with other members, by the various tools for tracking and logging health data, and by opportunities just like this – to participate in an advisory capacity.”

The 2016-2017 Team of Advisors recently kicked off their 12-month collaboration with PatientsLikeMe in Cambridge, Massachusetts, and will convene several times during the upcoming year. This is the third Team of Advisors the company has formed. The 2015 team focused on redefining patient partnerships and established new ways for the healthcare industry to connect with patients to deliver better care. In 2014, the inaugural group provided feedback to the research team and discussed ways that researchers can meaningfully engage patients throughout the research process.

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. With more than 400,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 85 research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact
Katherine Bragg
PatientsLikeMe
kbragg@patientslikeme.com
617.548.1375


Meet Jeff from the PatientsLikeMe Team of Advisors

Posted January 20th, 2016 by

Say hello to Jeff, another member of your 2015-2016 PatientsLikeMe Team of Advisors. Since he was diagnosed with Parkinson’s disease (PD) 20 years ago, Jeff does his best to stay active—in both exercise and advocacy.

Keeping up with his two teenage daughters is challenging enough, but when he’s up to it, Jeff also golfs, plays tennis and practices Tae Kwon Do (he’s a 3rd Degree Black Belt). And as an advocate for PD education, he’s participated in a panel discussion sponsored by Beth Israel and Deaconess Hospitals and given a presentation at Harvard Medical School.

Here, Jeff opens up about his biggest frustrations and encourages other patients to stay active and engaged.

What gives you the greatest joy and puts a smile on your face?

I have always enjoyed living life day by day and not taking myself too seriously. I believe that there many things that can be serious (i.e., health conditions, living conditions, world economics are a few), but people’s basic construct should be less serious. For example, watching my two daughters enjoy daily life at home puts a smile on my face.

What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

A corollary to my not taking myself too seriously is my belief that the vast majority of people in a 1 to 1 relationship are compassionate and willing to learn about the day to day challenges of living with a disability. The challenge is keeping that compassion as we move from the individual to groups of people, larger organizations, etc. As groups grow in size, the compassion shrinks almost to nothing.

The one thing that I have the greatest frustration with is the frequent difficulty I have communicating with other people. My speaking ability can be so poor that I perceive my audience questions my mental faculties.

How has your condition impacted your social or family life?

My world in some ways has become smaller. My wife and I don’t go out as frequently as we once did, nor do we entertain at home as much. In either case, going out or entertaining at home has become a bigger responsibility for my wife. One of my PD off-periods can occur at any time and more occurrences happen during the evening than during the day causing additional work load for my wife.

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

The voyage of Life continues. It is better to be an active participant than a sideline observer.  Get engaged, exercise, do things. Don’t sit at home feeling sorry for yourself.  Always take the extra step.

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A patient’s perspective: member Gary reports back from the FDA public meeting on Parkinson’s disease

Posted October 27th, 2015 by

Back in September, Sally Okun, Vice President of Advocacy, Policy and Patient Safety, and community moderator Molly Cotter, attended the FDA public meeting on Parkinson’s disease (PD) along with PatientsLikeMe member Gary (tupelo).

We posted some interesting developments from the meeting in the forum, but we also caught up with Gary for his perspective on the event. Here’s what he had to say:

Why did you want to be part of the FDA public meeting?

On the day I was diagnosed, back in 2012, I spent a great deal of time reflecting on my life. I thought a lot about how Parkinson’s disease will impact me and my family in the future. On that day I made a commitment to myself that I was going to take control, to the best of my ability, on the course of the disease progression, and would do anything possible to find a cure. I was determined to educate myself as much as possible about the disease, put together the best possible health care team, learn all I could about treatments currently in research, and participate in clinical trials. Parkinson’s was a new challenge in my life and I intended to tackle it like I would any other challenge that I had faced in the past. Along the way in this new journey, I became more publicly involved as a PD advocate, both for advancing research as well as supporting newly diagnosed patients. So, when I noticed the FDA announcement regarding the meeting, I decided to send in my comments and thoughts in hope that they might be helpful, to whatever degree, in moving research along for better treatments.

What did it mean to be accepted?

When I submitted my comments I never expected to be asked to participate on one of the panels, nor was I intending to attend the meeting, which was on the eve of a religious holiday. I was quite surprised when I was contacted by the FDA, but was caught in a dilemma. Participation meant missing an important time with my family. However, when we discussed it, we all agreed that this was such a great opportunity, and honor, to be able to represent the needs of the millions of Parkinson’s disease patients worldwide to the FDA. There was no way I could turn down that kind of invitation.

What was it like being there as a patient representative at the FDA event? Did you feel like your voice was heard?

I’ve participated in a number of seminars and conferences in the past, so there wasn’t much difference with the arrangement for this meeting. If anything, it was much more low key. Nevertheless, I definitely had a sense of awe when I arrived at the FDA complex. There were multiple buildings all over the sprawling campus. It immediately reminded me of the importance of this event compared to others I’ve attended. We were going to be presenting to the Director of the FDA’s Division of Neurology Products and nine other senior staff members. This is about as high up as we could go in our advocacy to advance Parkinson’s disease research.

During the meeting, it was difficult for me to tell how our presentations were going and whether they would have an impact on the FDA’s staff, although it appeared to me that they were listening intently. I was certainly concerned about the limited amount of time I had to speak. Several days later, though, I watched the webinar presentation of our event and I felt that we hit on the large majority of the most important areas of concern that our community has regarding current and new treatments. Only time will tell if the FDA will act accordingly with our hopes and suggestions. One small item that I noticed which suggests that they were listing involves a question on the Patient Questionnaire at the meeting. We were asked to choose from a list of Parkinson’s symptoms the ones that were most impactful on our lives. In my presentation, along with several of the other panel members, we noted that they didn’t include pain or orthostatic hypotension, two very common symptoms, on their list. I did, however, see that on the new follow-up survey the FDA is conducting, they have added both symptoms to the bottom of the list. So, at a minimum, they were listening as we spoke about these debilitating symptoms.

What did you learn while you were there?

Well, I can’t say that I learned much about the disease while I was there, but, of course, that wasn’t the purpose of the meeting. Our presentations were intended to educate the senior staff and decision makers of the FDA. That being said, what I did learn was the amazing dedication and effort that members of our Parkinson’s community will undertake in order to be heard at a forum. Members with severe difficulties traveled from all parts of our country in order to be able to speak for a few minutes. I was truly honored, and most definitely humbled, to be part of a panel with these dedicated individuals. If you haven’t yet seen the archived presentation of the meeting online, I suggest that you at least watch the members of the first panel speak to the FDA about their symptoms, it was amazing.

What are your hopes for future research in Parkinson’s disease?

We were asked by the FDA to limit our answers to their questions in the context outside of finding an actual cure. In addition, we were mainly directing our responses to the FDA’s role of controlling the approval and distribution of prescription drugs, more so than studying the potential impact of alternative therapies such as exercise, vitamins or other supplements, or the development of new medical devices to assist with symptomatic control (all of which are needed). So I’ll stay within that premise.

I see the need for a three-direction approach for future research. First, we need to continue and expand research into the biological science of Parkinson’s disease, as well as other neurological diseases with similar developmental processes, such as Alzheimer’s and ALS. With a better understanding of the disease cause, pathways, and progression, we will have a much greater chance of finding better treatments and potential cures.

Second, I would like to see research into the development of better symptomatic treatments. These treatments should be effective for multiple symptoms, have fewer disabling side effects, and have extended release and longer term activity. Although today’s treatments are somewhat effective treating motor impairment, they are greatly lacking in effectiveness for many other non-motor symptoms. Many of the drugs have side effects that can be more disabling than the symptoms they treat. In addition, it would be desirable for new treatments have ease of administration, such as oral, sublingual or inhalable as opposed to invasive surgery or device implantation.

Third, and most importantly, we need research to discover interventional treatments that can slow or halt the disease progression, if not totally cure it. This research should target the development of new drugs and vaccines that can intercede along all of the numerous biological pathways as the disease progresses. For example, we would find means to either stop the misfolding of proteins, prevent proteins already misfolded from accumulating in brain cells, or eliminate misfolded proteins which have already accumulated and are leading to cell death. Finally, I would like to see more research in alternative treatments, such as stem cells and human growth factors, in addition to traditional drug development. It’s imperative that the FDA allow our scientists to be as innovative as possible as they attempt to find treatments and cures for the most complex illnesses we have in brain diseases. With new interventional disease modifying drugs, along with improved symptomatic treatments and a proper exercise regimen, most, if not all of us dealing with Parkinson’s disease would be able to live active and productive lives for many years beyond our diagnosis.

For more information, check out the full video of Gary’s panel. And don’t forget to visit the site to connect with Gary and the more than 11,000 other PatientsLikeMe members living with Parkinson’s disease.

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You can make a difference in April

Posted April 3rd, 2015 by

Eight years ago this April, the PatientsLikeMe Parkinson’s disease (PD) community launched, and now, more than 12,500 people are sharing about what it’s like to live with PD. What better way to recognize this awesome community than to participate in Parkinson’s Disease Awareness Month?

Listen to Leslie Chambers, the president and CEO of the American Parkinson’s Disease Association (APDA), explain the facts about PD in the video below:

As she says, 60,000 people worldwide will be diagnosed with PD in 2015 – that averages out to 164 people every day, or one person every nine minutes.

This April, it’s not just about the 12,5,000+ PatientsLikeMe members living with PD, or the 60,000 people who will be diagnosed in 2015 – it’s about everyone who is living and has ever lived with PD, and all their family, friends and colleagues who have been affected.

You can make a difference. The APDA is running a “30 days, 30 ways” campaign all month long, so be sure to check their website daily to learn how to get involved. The Parkinson’s Disease Foundation is also participating in raising awareness, and they’ve created a great toolkit to get you started. And don’t forget to share through the #PDawareness or #Parkinsons hashtags.

If you’ve been diagnosed with PD, join 12,500 others in sharing to live better, together.

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Patients as Partners: Hallucinations and Parkinson’s disease questionnaire results

Posted February 26th, 2015 by

It’s time for another Patients as Partners post, and today, we’re happy to share the results of the Hallucinations and Parkinson’s disease questionnaire.

In March 2014, more than 500 PatientsLikeMe members living with Parkinson’s disease (PD) took part in an Open Research Exchange (ORE) questionnaire about their condition. They worked with Dennis Chan and Ruth Wood from the University of Cambridge to understand a symptom called an extracampine hallucination, which is the sense of a presence beside or behind you even when there’s nothing or nobody there. So, unlike visual hallucinations, the presence can only be sensed or felt, not seen.

Everything the community shared will help researchers develop a new tool to better measure this type of hallucination and alert doctors and care teams to ask about this symptom earlier rather than later. Read the results here.

What’s ORE all about again? PatientsLikeMe’s ORE platform gives patients the chance to not only check an answer box, but also share their feedback on each question in a researcher’s health measure. They can tell our research partners what makes sense, what doesn’t, and how relevant the overall tool is to their condition. It’s all about collaborating with patients as partners to create the most effective tools for measuring disease.

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

Posted January 6th, 2015 by

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

 

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

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

 

What’s next for open science?

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

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

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

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

Helping spread the word

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

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

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

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

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

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

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

Why do you think the prize model is so important?

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

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

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

Why do you work so hard?

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

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

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

…and that ALS patients can love and be loved.

How do you see open science evolving in the future?

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

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

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

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2014 recap – a year of sharing in the PatientsLikeMe community

Posted December 23rd, 2014 by

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

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

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

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

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

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

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

Members living with PTSD:

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

Member living with Bipolar:

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

Members living with MS:

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

Members living with Idiopathic pulmonary fibrosis:

Members living with Parkinson’s disease:

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

Members living with ALS:

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

Members living with lung cancer:

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

Members living with multiple myeloma:

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

Caregiver for a son living with AKU:

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

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

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

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

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Getting to know our 2014 Team of Advisors – Lisa

Posted October 27th, 2014 by

A few weeks ago, we kicked off the “Getting to know our 2014 Team of Advisors” blog series with Dana, a PatientsLikeMe member from New Jersey that is living with bipolar II. And now, we’d like to introduce you to another member of the team – Lisa. 

About Lisa (aka lcs)

Lisa’s recent work experience was to help healthcare providers improve care delivery working for Cerner Homecare, a home health/hospice software solution, and Press Ganey, a patient satisfaction measurement/improvement organization. She is very knowledgeable about providers/systems and the flaws in the system. She was diagnosed with Parkinson’s disease (PD) in 2008, and just recently stopped working as a full time executive due to non-motor PD symptoms like loss of function, mental fatigue and daytime somnolence, and she is now a volunteer at National Patient Advocate Foundation, and a Mom whose daughter just got married in June.

 

Lisa on being part of the Team of Advisors

“When we had our first in-person meeting in Cambridge, we were a group of strangers who had no idea what to expect. We quickly learned we were connected by our common experiences and our passion to improve the patient’s experience. I think we were all surprised that our variety of health conditions gave us much more in common than we anticipated. Our passion and respective experiences made the discussion rich. And the PatientsLikeMe Team made us feel special and like we were part of the team. I think dinner the night of our arrival, before we’d had any formal introductions to each other, lasted over 3 hours and ended only because of fatigue!

Before I was introduced to the history and mission of PatientsLikeMe at a deeper level, I was an advocate and I knew I was benefitting from the community and tools. Learning more about the history of the brothers, the openness of the culture and the passion shared by the formal team has made me an evangelist.”

Lisa’s view on patient centeredness

“Patient centeredness is a new buzz-word in healthcare today. It’s somewhat oversimplified, but at its most basic it is putting the patient at the center of care. This means many things in healthcare: ensuring access to care, engagement of the patient at and between visits in their own care, integrated care across specialties. In research: collaboration among researchers to advance discoveries as the priority, with financial return secondary; finding a better balance between patient safety and speed to market of new discoveries, improving patient participation in clinical trials.”

Lisa’s contribution to researchers at the University of Maryland 

PatientsLikeMe recently invited the University of Maryland (UMD) to our Cambridge office for a three day consortium that kicked off a partnership funded by their PATIENTS program, which aims to collect patient input and feedback on all phases of research, from ideas to published results. For one of the working sessions we invited Lisa to join us remotely, to discuss her journey with Parkinson’s disease (PD), and share her perspective and expertise as a patient. Here’s what she experienced:

“When I was still working, I learned that Parkinson’s affected my ‘public speaking’ ability. So, starting our discussion with a Q&A format helped me feel that it wasn’t presenting but rather just talking with colleagues. Also, speaking ‘as a patient’ meant I didn’t have to pretend…like if the right word didn’t come to me quickly, it was okay. The PatientsLikeMe team made it easy.

I had to work out my thoughts in advance and at first had considered sharing ‘data’ about PD. As I thought further though I realized that they live with data, they don’t live with PD. Instead I tried to share my experience through storytelling, hoping I could bring them into the life of a PWP on a daily basis.

Two things came as a surprise, both out of the questions I was asked by the UMD team. When we opened up the discussion to questions, there was some good discussion about the hurdles of participating in a clinical trial from the patient’s perspective. But then the researchers asked me questions I didn’t expect – not inappropriate, just surprising to me. One [of] the researchers wanted to know how my condition affected my family.

Another asked me, “what would my experience be like if I didn’t have PatientsLikeMe as a resource?” That one made me think. I hadn’t realized that I’d probably have no idea what I didn’t have. I would not know that other patients often have this onset of anxiety in public that they’d never had before. I would not know that there is a skin condition associated with PD. I would have a list of meds I kept and probably wouldn’t be able to go back and see start and stop dates because I wouldn’t have bothered saving that data…..

Patient participation in research is more than recruitment and trial results. I think a patient should participate in the study design process – before the Institutional Review Board approves. Be more creative in the design:

  • Ensure patients who meet the study criteria KNOW about the study – extend your reach to leverage support groups, forums and patients.
  • Ensure patients have ACCESS to the study – if your study requires multiple visits and has a handful of study sites, you’re limiting yourself to a finite number of potential participants.
  • Ensure patients learn about the study RESULTS – we need to know what we did mattered so we’re inspired to do it again, so we’re inspired to tell others.

For the PD community, a recent study found that only 1 in 10 patients with Parkinson’s disease have participated in a trial. PARTICIPATE! My experience is that YOU have to go find them. Sure, if you see a doctor in an academic setting, you’ll see flyers posted on the bulletin boards about trials (your provider may or may not mention to you). PatientsLikeMe has a clinical trials tab (did you know that?). PD has Fox Trial Finders and I suspect there are other condition specific registries. Or go to http://clinicaltrials.gov/ and search a database of private and public clinical trials. Together we can all help each other and ourselves!”

More about the 2014 Team of Advisors

They’re a group of 14 PatientsLikeMe members who will give feedback on research initiatives and create new standards that will help all researchers understand how to better engage with patients like them. They’ve already met one another in person, and over the next 12 months, will give feedback to our own PatientsLikeMe Research Team. They’ll also be working together to develop and publish a guide that outlines standards for how researchers can meaningfully engage with patients throughout the entire research process.

So where did we find our 2014 Team? We posted an open call for applications in the forums, and were blown away by the response! The Team includes veterans, nurses, social workers, academics and advocates; all living with different conditions.

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The Patient Voice- Parkinson’s member Ed shares his story

Posted April 21st, 2014 by

 

Back in March, we shared some of our infographics and videos on the blog, and as part of our #dataforgood initiative, PatientsLikeMe member Ed spoke about his experiences with Parkinson’s disease and why he thinks it’s all a group effort. Click above to watch his video, and keep an eye out for more interviews with PatientsLikeMe members talking about what #dataforgood means to them.