2 posts tagged “MS nonprofit”

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!

Multiple Sclerosis Awareness Week: Interview with Gardener

Posted March 10th, 2010 by

It’s National Multiple Sclerosis (MS) Awareness Week.  There are more than 17,400 patients in the PatientsLikeMe MS community sharing data about their symptoms, treatments and side effects, lifestyle modifications and overall health outcomes.

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.

2166 (Amy) What’s on your mind these days?
3203 (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.

2166 (Amy) What do you enjoy most about winter?
3203 (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.
2166 (Amy) How do you keep perspective with your condition?
3203 (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.
2166 (Amy) Share why you decided to make your profile public.
3203 (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.
2166 (Amy) Thanks for sharing, Gardener!