Announcement

Collapse
No announcement yet.

Served on a Dept of Defense IC Research Panel!

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • icnmgrjill
    replied
    LOL Nekura!!!! Boom is right! It was an honor to do so.

    I would like to clarify that I was NOT the chairperson of the committee.

    Hugs to all!

    Jill

    Leave a comment:


  • nekura
    replied
    Originally posted by dyno View Post
    I have had IC for over 35 years and I have never heard of it being contagious either.

    Congratulations Jill! Great honor and well deserved!
    I lol'd.

    This may sound horrible, but if IC WAS contagious just imagine the research funds that'd be streaming in. Just pass it on to some politician and.. boom.

    Leave a comment:


  • nekura
    replied
    That vets are getting IC is very alarming. It bears the questions of if environment can trigger it..

    Leave a comment:


  • dyno
    replied
    Originally posted by vanilla View Post
    Well, he doesn't have IC, but I was thinking he could be carrier.
    I have had IC for over 35 years and I have never heard of it being contagious either.

    Congratulations Jill! Great honor and well deserved!

    Leave a comment:


  • vanilla
    replied
    Well, he doesn't have IC, but I was thinking he could be carrier.

    Leave a comment:


  • Mothergoose
    replied
    I don't think I have ever read anywhere IC is contagious

    Leave a comment:


  • vanilla
    replied
    This is very scary. I'd hate to think my husband gave this to me.

    Leave a comment:


  • statesboro
    replied
    I'm thankful I just read all of that. Of course, I can see why you could not say anymore than you did. Regardless, I know that you do more than I am usually aware of. It's all good. I was not aware we have got military personnel returning with IC. (hmmm) Why? I know we don't have a cause, but I can tell it seems like every patient did not get IC the exact same way. Besides, I would figure the ones that came back with it did not complain before hand. Otherwise, IC could keep somebody from deploying. (which I was in the Red Sea during Desert Storm back in 1991)(and considered a war veteran) Of course, I had never heard of IC until being diagnosed in September of 1997. Yep! Maybe we will get to find out more about it at some point. OK. Smile!...God loves you.

    Leave a comment:


  • Mothergoose
    replied
    You never cess to amaze me with everything you find the time to do. An honor yes, but this site alone must take up a lot of your time.

    I am sure everone here and everyone with IC that has moved on from this site really appreciates all you do for the cause, building awareness, helpping people through the maze of IC, and advocating for research.

    Especially when you think about your daily life you have the IC things to deal with too.

    Thank you for all your time and effort.

    MG

    Leave a comment:


  • SuziQ64
    replied
    That is fantastic Jill! On behalf of all of us with IC, thank you!

    I thought your comment on veterans returning from Iraq and Afghanistan are experiencing IC at an alarming rate quite fascinating. Any thoughts on why this might be happening? Is it somehow stress related or is it environmental?

    Thanks again for all of your hard work!

    Suzi

    Leave a comment:


  • nanawaggs
    replied
    How sad that it takes such an increase of those affected with IC to see more research available, but how comforting that there is hope for more effective treatment and possibly a cure someday!

    It's such a blessing to know that you, being truly dedicated and compassionate, were part of this elite group to help good things happen.

    Thank you over and over, Jill.

    Leave a comment:


  • ICNDonna
    replied
    Way to go!

    Warm hugs,
    Donna

    Leave a comment:


  • amaranthe
    replied
    Wow, Jill!

    That is very impressive! What a tremendous honor, especially that they placed you at the head of this, even over DRs and research scientists! Of course, since you were the only one who actually HAS IC, and since you are also the founder of this very successful and infomative website, then you really would seem to be the obvious choice! But, still, that had to be very thrilling for you! I cant wait until the information finally comes public (Someday, maybe?) I would love to see everyone's thougts on this and to see how much the allocated to study this bizzare angle. (I mean seriously, who would have ever thought the DoD would give us a thought!) However, I gotta say if there was a way for our enemies to "give someone IC" then, it would do more damage than anyone besides us could ever even realize!)

    By the way.....I recently heard that 1 in every 5 women have IC! If that is true, then think about what a phenomenal amout of people out there who are suffering! Anyway, what an honor for them to ask you to serve on that panel!


    Again, I am so very proud of you!

    Hugs,

    Amaranthe

    Leave a comment:


  • icnmgrjill
    started a topic Served on a Dept of Defense IC Research Panel!

    Served on a Dept of Defense IC Research Panel!

    AIBS Research Panel Selection

    I'm thrilled to share some "Inside the ICN" good news. Last July, I was contacted by the American Institute of Biologic Sciences to ask if I would be interested in serving on a peer review panel for IC research for the 2011 fiscal year. My answer, of course, was "Yes! How can I help?" I'll confess that I was very excited to be given the opportunity to participate. I completed an extensive application and found out two weeks later that I had been selected as the sole patient representative. While it was a tremendous honor, It was also an eye opening journey into the heart and soul of how research studies are selected.

    The Department of Defense (DoD) Peer Reviewed Medical Research Program for Fiscal Year 2011 allocates $50,000,000 per year for the study of various medical conditions relevent to military readiness. Because interstitial cystitis is being diagnosed at somewhat alarming rates in returning veterans from Iraq and Afghanistan, research into new diagnostic methods and treatments are a high priority along with, of course, several other conditions such as chronic migraine and post traumatic headache, drug abuse, dystonia, epilepsy, inflammatory bowel disease, neuroblastoma and others.

    The IC committee consisted of six members, two physicians, three PhD researchers and myself. I had about three weeks to review eleven 100+ page research applications which I gave various scores too. In mid September, the committee as a whole met to review our scores and generate a summary. Our recommendations are then given to the final committee of military representatives who make the actual allocations. While the other reviewers were assigned three studies, I had to review ALL elevent and provide comments about their impact on the IC patient community. I was then required to defend my position and scores. Not easy mind you when you're working with world class researchers and physicians. The committee meeting was alternately tense, invigorating, intimidating and inspiring.

    The eleven studies were diverse, fascinating and, sadly, I can't talk about them due to a confidentiality agreement. What I will say is that the IC research movement is moving quickly and with great promise. I'd like to thank the staff at AIBS and my fellow committee members for the honor of participating this year. It was my privilege to participate.
Working...
X