2 posts tagged “Neuromyelitis Optica”

Rare Disease Day 2011: “Rare, But Equal”

Posted February 28th, 2011 by

RDD_whiteFor patients with prevalent diseases, it may be easy to find others with your condition.  You meet them at clinics; you run into them when seeing your specialist; or you participate in one of the support groups in your area.  For those with rare diseases, the simple act of finding another patient like you isn’t always as easy.  You might be the only patient your doctor has seen with your condition.  Finding another patient often becomes a goal and sharing and learning from them a welcomed reward.

Alongside NORD and EURORDIS, we are celebrating Rare Disease Day and they’ve deemed this year’s theme “Rare, but Equal.”  At PatientsLikeMe, patients are patients, no matter what their condition.  Patients with rare diseases are sharing their health information alongside patients with more widespread conditions.

So, who do we have sharing information about their rare disease?  To date, more than 455 patients with Multiple System Atrophy and 122 patients with Progressive Supranuclear Palsy, both neurodegenerative disorders that mimic Parkinson’s disease, have joined our community.  Do you have Neuromyelitis Optica, the autoimmune inflammatory disorder affecting the spinal cord, optic nerve, that has lesions often misdiagnosed as multiple sclerosis?  There are 332 patients just like you.  Sharing right alongside these patients you’ll find 388 patients with Progressive Muscular Atrophy (a rare subtype of ALS which only affects the lower motor neurons) and 331 with Primary Lateral Sclerosis (a subtype of ALS which affects the upper motor neurons).

Many of you also know that we actually started PatientsLikeMe focused on the rare neurodegenerative disease, ALS.  Six years later, there are now more than 4,000 ALS patients-plus almost 20% of the newly diagnosed in the U.S. every month-sharing their journeys and learning from one another.  (You can read about highlighted milestones in our 2010 ALS Awareness Month blog.)  In 2011, we’ll continue our heritage of serving those with rare diseases by improving this overall experience of finding a “patient like me.”

There are no major awareness raising pink ribbons or yellow wristbands for these rare diseases.  But, there is a group of patients who have found each other, who are sharing with one another and the world their disease experience.  And, that will translate to accelerated research and better outcomes – two things we are hoping to make a little less rare.

PatientsLikeMe member mcotter


Celebrating MS Awareness Month:
Interview with Accelerated Cure’s Sara Loud

Posted March 25th, 2010 by

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.

2271 (Molly) What is the Accelerated Cure Repository?
20091102-acp-sloud-0015 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.
2271 (Molly) How can it benefit MS patients?  Are there any other patients that can participate?
20091102-acp-sloud-0015 (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!
2271 (Molly) As we state in our Openness Philosophy, we believe openly sharing data is a good thing.  How does the Repository encourage this concept?
20091102-acp-sloud-0015 (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.
2271 (Molly) How is the data being used that is collected from the repository?  Do patients have access to the research results?
20091102-acp-sloud-0015 (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.

2271 (Molly) Thanks so much, Sara!