2 posts tagged “MS patients”

One for All: Interview with Diamondlil58 (Welcomer of 15k Patients)

Posted December 9th, 2010 by

We’ve been learning about how connected our patients are this week in our blog series called “One for All.”  In the first two blogs by Jeff Cole, we read (and saw through cool graphics) how some of our members are initiating an unparalleled universe of dialogue.  Today, we sit down with one of those members, Diamondlil58.   A true “diamond” in the MS community, she has left more than 16,000 comments to  welcome other members and get conversation started. Here’s our interview with one of the founders of our PatientsLikeMe “Welcome Wagon,” Diamondlil58.

liz1 (Liz) How and why did you start welcoming people? 
diamondlil38 (Diamondlil58) I was welcomed to PatentsLikeMe by two lovely ladies – JHCamero and Greeneyes.  Their messages made me feel welcome.

I wanted to give back to the MS Community.  I didn’t feel that I knew enough about the disease and the effects it had on others to offer advise in the forum.  But, greeting people is something that I felt comfortable doing.

liz1 (Liz) What type of responses do you get from people you welcome?
diamondlil38 (Diamondlil58) I have received many nice replies from new patients.  Some tell me their experiences,  others ask questions or request help setting up their profile page.  Some want to know my view on therapies and treatments.  I continue to welcome because it has been rewarding to me.  I understand first hand how scary the MS diagnosis can be; how friends and family can’t possibly understand what it’s like to feel the way we do; how we can be perceived as lazy; or the fear of parking in a handicap parking spot and hoping no one verbally attacks us.  Welcoming give others an opportunity to view a profile and helps them see what they can do with theirs.
liz1 (Liz) Do you keep in touch with people you welcome?
diamondlil38 (Diamondlil58) I do keep in touch with so many people that I have welcomed through this site.  Some through Facebook, others in email.  I’ve even met several in the past year or so.  I have built some wonderful friendships here and make more everyday.
liz1 (Liz) What is one thing you’ve learned from looking at new member’s profiles? 
diamondlil38 (Diamondlil58) That we have all different backgrounds.  That we are not all the same but we all share one thing in common and that gives us something to build on to support each other.
liz1 (Liz) Do you feel more engaged with the site and its members as a result of the Welcome Wagon?
diamondlil38 (Diamondlil58) Absolutely!  I wouldn’t do it if it was negative or wasn’t rewarding.  It’s my way of giving back to the MS Community.  I have a great appreciation for the founders of this site, the staff, and the caregivers that join us.  This site has been therapeutic for me in more ways than one, and I am so grateful that I came across it three years ago surfing the internet looking for information on my symptoms.
liz1 (Liz) We’re glad you did too.  Thanks so much for keeping the wagon rolling, Diamondlil58.  You’re an inspiration.

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!