Posted by Lori Piscatelli Scanlon | March 25, 2010
It’s MS Awareness Month and we’re excited to bring you information from our nonprofit partner, Accelerated Cure Project for MS. We briefly mentioned the Accelerated Cure Repository in our blog interview with Devic’s patient, Gracie. We thought we’d take the opportunity to ask The Accelerated Cure Project for MS a bit more about the repository and what it means for MS patients. Here’s the interview between Molly Cotter (PatientsLikeMe nonprofit development) and Accelerated Cure’s Operations and Repository Director, Sara Loud.
(Molly) What is the Accelerated Cure Repository?
Accelerated Cure Project, (www.acceleratedcure.org), is a research-focused national nonprofit whose mission it is to cure MS by determining its causes, triggers, and disease mechanisms. Our main resource to accomplish this is our Repository, a collection of biological samples and data collected from people with MS and related demyelinating diseases. We collect these samples and data at our 10 collection sites across the country and then distribute them to scientists, both academic and commercial. The Repository is a critical resource to the research community. We’ve taken on the burden (time, cost, complexity) of sample and data collection so that scientists can spend their time and money doing their most important work, the research. The Repository provides the research community with a large (samples from nearly 2,000 people so far!), well-characterized, high-quality set of samples and data.
(Molly) How can it benefit MS patients? Are there any other patients that can participate?
(Sara) While there’s no direct benefit to an individual who participates in the Repository (we don’t offer any treatment, for example), the Repository offers the potential of a tremendous benefit to those with MS and their families. The scientists who are using our samples are working on developing better diagnostic tools, learning more about treatment effects, and making great strides into understanding what triggers MS. Enrolling in the Repository is a terrific way to participate in research.We’re not only enrolling people with MS but also folks with other demyelinating diseases such as Neuromyelitis Optica (NMO), Transverse Myelitis (TM), Optic Neuritis (ON), and Acute Disseminated Encephalomyelitis (ADEM). There is so much to be learned by studying these diseases in conjunction with each other. We are also collecting control samples from family members who don’t have one of these diseases. We enroll parents, children, siblings, and even spouses. The whole family can be involved!
(Molly) As we state in our Openness Philosophy, we believe openly sharing data is a good thing. How does the Repository encourage this concept?
(Sara) At Accelerated Cure Project, we wholeheartedly believe that collaboration and open sharing of information are key to solving the puzzle that is MS. Our Repository is open access meaning that anyone can apply for samples and data. We’re currently supporting more than 30 studies worldwide with our samples and/or data. One of the requirements for access to the Repository, however, is that the researcher must agree to return their research results back to us at Accelerated Cure Project for inclusion in our database and sharing with other researchers. This means that researchers who have never met or spoken with each other are learning from and building upon each other’s research. This type of information sharing is likely to be critical to curing MS.
(Molly) How is the data being used that is collected from the repository? Do patients have access to the research results?
(Sara) The data is being used in a number of ways. Scientists using our samples nearly always request supporting data to enhance their research. We’ve also had requests for just data, no samples, from scientists who are doing data mining, looking for correlations and new findings on what may trigger MS. Don’t forget that these scientists are not only studying the data that we’ve collected from participants but also the data that has been generated by other scientists studying the samples. We anticipate supporting many more projects relating to analyzing the vast amount of data collected!Because the samples and data collected from participants are stored anonymously, there’s no way for us to report back individual research results. We do report regularly on the research being done using the Repository on both our web site and in our quarterly newsletter. We are always very excited to update everyone with the new findings that come about through the use of the Repository.
I hope that people contact me to learn more about participating in the Repository. Contact me any time.
Posted by Lori Piscatelli Scanlon | March 19, 2010
Following up on last week’s launch of the PatientsLikeMe Transplants Community, we present you with the next in our podcast series – PatientsLikeMe OnCallTM: Transplant Community Walk-Through. Podcast host, Aaron Fleishman, interviews Product Manager Maureen Oakes about new and upgraded functionality rolled out with the launch of this transplants community.
Topics covered in this podcast include:
Patient Profile: get a glimpse at how transplant recipients capture their experiences on their profile by providing a transplant history, taking a quality of life survey, and entering lab and test data
New Timeline Feature: patients in the transplants community can record and share every step of their transplantation journey with this new timeline feature
Upgrades to the Patients Tab: a change made across all the PatientsLikeMe communities, members will find searching for patients like you much clearer and easier to do with these new upgrades to the Patients tab
Stay tuned for more from the PatientsLikeMe OnCallTM podcast series, and don’t forget to spread the word about the new transplant community.
Posted by Lori Piscatelli Scanlon | March 18, 2010
At PatientsLikeMe, we believe in getting to know the person, not just the “patient.” That’s why we interview members each month in our newsletter to find out more about how they approach life. In honor of MS Awareness Month, we are pleased to share with you our recent interview with Ramilla, a three-star member of our MS community. Here’s what Ramilla had to say…
(Amy) What keeps you motivated?
(Ramilla) I keep motivated by focusing on the progress that I still make every day. Even on the hard days, when I don’t feel so well, I manage to take something from it that I feel good about, and those hard days make me appreciate the good days so much more.
I am also motivated by the people I meet. I have met so many people over the years who have been affected by MS, and many more who don’t know anything about MS. I like that I can motivate the people I meet to be more active, both able bodied, and people with chronic conditions like MS.
I imagine that by running the races I do, and talking to people about the benefits of a healthy and active lifestyle, that I might motivate a few people to become more active themselves. I mostly want people who like me have MS, but are still capable of being active, to know that it might help their symptoms and make them more comfortable.
(Amy) Who do you admire and why?
I admire a lot of people who have touched my life since I was diagnosed. I found inspiration from Michael J. Fox, Montel Williams, and Mitch Albom with their books about the conditions they and their friends have faced.
The person who I admire the most these days, and who I think about every time I finish a race, and every time I feel like I don’t want to go for a run, is Jon (Blazeman) Blais. Jon was diagnosed with ALS in 2005, and in October that year, he ran the Ironman in Kona, Hawaii.
He rolled across the finish line with a determination that inspired me to try a triathlon myself and has inspired athletes of all levels to finish their races with a roll across the line in his memory. His parents are fierce advocates for ALS, and he is remembered every year at the Ironman World Championships. Here is a video about him on YouTube.
(Amy) How has your condition affected your work life?
(Ramilla) My work life is affected by my MS every day. I notice my energy levels change through out the day, and there are a lot of distractions. Sometimes I get confused and lose track of what I am doing. I plan my day to take advantage of when my mind is the clearest to be the most productive, to tackle the complicated projects that I work on day to day.
It has also affected how I plan for my career in the future. Not to sound morbid, but I think it would be silly of me to plan of having a long career with an active, physically demanding job. I am going back to school to upgrade some of my high school courses, and looking at going to college, and maybe university. I think it may be better to plan on a knowledge-based job rather than a physical one. My hope is that I can manage to maintain a career and be self sustainable for the long term.
(Amy) What’s your favorite aspect of PatientsLikeMe?
(Ramilla) I love that through PatientsLikeMe I can connect with so many more people who are fighting MS. Already I have been in contact with people who were active pre-diagnosis, and had not considered that they could still be active. The encouragement I get from the people I have met on the site has been a great help to my training.
While this site has really opened my eyes to many of the less inspiring aspects of MS, it has re-affirmed my belief that life goes on, and it is up to me to live it to the best of my ability. PatientsLikeMe gives me hope, and that is one of the most important things you can keep when you have a condition like this.
(Amy) Thanks for sharing your story with us, Ramilla!
Posted by Lori Piscatelli Scanlon | March 11, 2010
It’s World Kidney Day 2010 – a global health awareness campaign focused on the importance of kidneys and prevention of kidney disease. According to www.world kidneyday.org, “Many people are currently not aware that their kidneys are damaged and they might find out too late. Dialysis and transplantation can be prevented if kidney diseases are detected early.” Here are some more interesting facts from the site:
Diabetes and high blood pressure are key risk factors for Chronic Kidney Disease (CKD).
There are currently over 240 million people with diabetes worldwide. This figure is projected to rise to 380 million by 2025.
The number of people with renal replacement therapy have increased from 426,000 in 1990 to 1.5 million in 2000 and is expected to rise to 2.5 million by 2010.
Did you know also know there are more than 83,000 people in the United States currently on the kidney wait list? As members of our new transplants community can tell you, it can be a long and trying journey to get a new organ. (Watch this video to learn more about our transplants community which launched earlier this week.)
Let’s raise awareness of the risk factors for kidney disease. And thanks to all of you who are healthy enough to be donors. Your kidney could save someone’s life some day.
In honor of the week, and March being National MS Awareness Month, we will be posting interviews with MS patients and nonprofit partners on the blog each week to help raise awareness about real-world experiences with the condition and initiatives that are keeping the research going. Today, is our interview with gardener, one of our very active patient members who joined the community back in 2007 just after it launched. She recently answered some questions from Amy Morton, a member of our marketing team here at PatientsLikeMe, about life, living with MS and being a member of PatientsLikeMe.
(Amy) What’s on your mind these days?
(Gardener) Right now, at this moment, my cats, because they’re begging for food, and being very loud and persistent.
In general, I’ve been focusing on violin and accordion performances coming up in April. I’m playing dance solos. It should be fun. That, and figuring out something to make as a demo for this month’s sewing group. I went over two years of having something new at every meeting until October of last year, then got whacked by a bout of depression.
It’s lifting, and things are fun again. My friends aren’t annoying anymore, either. Come to think of it, everyone was kind of annoying during the worst of it. At the time, I told a friend I wanted to curl up in the bottom of my closet. She suggested bringing along a fluffy blanket and a pillow. That wasn’t an annoying suggestion.
(Amy) What do you enjoy most about winter?
(Gardener) Watching my dog play in the snow. He likes the deep fluffy snow we’ve gotten recently and shows such joy running through it. The lower temperature is nice, too, as is meeting people for whom this is their first real winter. Seeing others enjoy things like snowball fights so much gives me a better outlook on winter. I have never been good at throwing, so I just watch.
(Amy) How do you keep perspective with your condition?
(Gardener) For a long time, I’ve tried to keep in mind that the only constant is change. That outlook helped a lot when I was diagnosed. This is no one’s fault, it’s not a lesson, and it didn’t happen for a reason. MS is a random thing. It’s hard to take random things personally. Also, I’ve had friends go through refugee situations. After hearing their stories, it’s hard to think of this as more than an inconvenience. Yes, MS sucks, but there are many things that are worse.
(Amy) Share why you decided to make your profile public.
(Gardener) Something that I’ve found frustrating in general is how few things people really discuss. By having the profiles open, you can see what others are taking for symptoms, and how they like the treatments. You can also see what kind of results people are getting with what they’re doing. It would be hypocritical to use a resource like that and not return the favor. Also, PatientsLikeMe feels like a safe place to share.
At PatientsLikeMe, people with every type of condition are coming together to share their health experiences, find patients like them and learn how to take control of their health. The result is improved care for patients as well as an acceleration of real-world medical research.
Stay tuned to our blog for the latest happenings with our company, our patients and our mission of opening up the healthcare system.