Accelerated Cure Project

[Lulu54]

Today I began my participation in the Accelerated Cure Project and I would like to encourage you all to do the same if possible.  You can read all the details on their website, http://www.acceleratedcure.org

but if you want a brief synopsis, here it is:

ACP is a non-profit group that is collecting data and blood samples from MS and other demyelinating disease patients, and people that are family members or close to them as control subjects.  All of the blood and data are then sent to a central repository, where researchers from all over the world can access the information for their research needs.  

The research is then shared with other researchers.  It is an amazingly simple concept that makes a wealth of information available to everyone.  Their goal is to collect data and samples from 10,000 patients initially.

Today I met with a member of the research team and gave my history and blood.  They collected 9 vials, which is nothing compared to the 12 vials they took when they worked on my diagnosis last year :-)

The history included my illnesses, family illnesses, environmental questions and all sorts of things that I would have never thought to ask.  It took about two hours to complete the whole process on site, but I spent more time in advance reviewing the questions with my parents because a lot of the questions I had no clue.  Patients will be asked to return every 1-2 years to donate more blood and update their health information.

Next Monday I am taking two of my sisters to the OSU clinic so they can repeat the process as my control subjects.  We're going to make it a full day  outing, complete with a stop for Jeni's Ice Cream  (handcrafted, organic made with all locally grown items - I want to try the Sweet corn & black raspberry ice cream , but I digress!  Google Jenis ice cream if you want to make your mouth water).



There are currently 8 research sites involved in this project - geographically spread around the country.  Unfortunately you have to go to their site to donate - but you don't have to be a patient at that site.  If you are interested, contact the person listed for the site you would be willing to go to for the process.

The history forms and the participating sites are listed under the section titled "repository."


There is absolutely no financial compensation for participating, but ACP does offer a free t-shirt.  You don't have to be a participant to get the shirt - you can request it on their website.

I hope that perhaps my blood, DNA and history will help to unlock the clues to this MiSerable disease.  If possible, I  encourage you to do the same.

be well, do good,
Lulu

[Lulu54]

DV- you can hijack all you want.  But you might want to start a separate post about things to do in NYC.....  its a big apple to take a bit out of.  How long will you be there?

Be prepared to be amazed..... I love to visit but wouldn't want to live there.

L

[doublevision1]

For sure, I am already looking forward to returning next year and I haven't even gotten there this year yet!  First trip to NYC...so excited...lifelong ambition to visit and somehow in my many travels to the U.S. of A. I have never gotten around to it until now.  

Have tickets to Bill Maher performing at Lincoln Center....very excited about that too, I love that guy.

Shopping and dining suggestions would be most appreciated.  Anyone?

Sorry Lu, it would appear I have hijacked your post!

[Lulu54]

DV,
My controls (sisters) are done and will only go back if either develops a demyelinating disease.  I will be called back in 1-2 years to update my health history and give more blood if needed.

I am so glad that someone else is able to participate... the one year callback gives you a great excuse to return to NYC.

congrats on fitting this in.....

L

[doublevision1]

I was just about to post a blurb about Acclerated Cure when I saw this thread from last month.  Glad I checked....you saved me a lot of typing!

I started looking into this project recently.  I'm on their mailing list but didn't think I would be able to participate due to the locations of the repository sites, all very FAR from where I live.  Then it occurred to me that I might be able to get in on it when I visit NYC this fall, so I contacted the coordinator and they can see me at that time.  I'm now in the process of filling out the forms, etc.

Is there anything left for you to do, or do you just return in future to provide updates?

[Lulu54]

bump to go with Sho's thread about ways you can help in the study of MS............

[Lulu54]

Dennis, maybe when you finally get the dx of ms that we all expect for you ,then you can volunteeer for this one.  You would be a great genetic study because of the close relatives with MS too.

Maybe the new theory should just revolve around "ice _____ " and everyone could fill in the blank.  Tea, cream, pickles.....  :-)

L

[Sailorsong]

I hate to shoot your theory about ice cream down, but I have never really liked Ice Cream that much. :) Now a really ice cold pickle, that is what does it for me! When I lived in MA I would drive 2 hours to a restaurant in RI and wait in line to get a seat for another 2 hours because they had the best pickles I have ever had. I wish I could have gotten their recipe for them. :( The long lines were because everyone would go there for the deserts.Pies that were 6-8 inches deep and just about every type of baked desert you can think of.

Too bad I would be excluded for this project as I have a lot of relatives with MS. The last Nerve Conduction test I had showed nerve damage in the area of my left ankle.

Dennis

[Lulu54]

I definitely jones for ice cream  - it is my nightly reward for shooting myself with the copaxone!  I hope there is a site near you - we need tons of volunteers to give to the cause.

[Karen99]

Thanks Lu.  You are always a great source of knowledge and resource.  I'll check to see if there is a location near me.  I'll do what I can to help future MS'er.  Who knows, maybe we can even help ourselves.  

Maybe the cause of MS is ice-cream?  LOL   Seems everyone I know with MS has a thing for ice cream.