American Lymphedema Framework Project Meeting in Missouri

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kira66715
kira66715 Member Posts: 4,681
edited June 2014 in Lymphedema

There will be a meeting of the ALFP in Missouri Friday May 2nd, and any of us can sign up--it should be very interesting: you can register on the page

Any local people interested??

http://alfp.org/article.php?pid=article&id=86

ALFP Stakeholders Meeting
Moving Forward Together to Improve Lymphedema Care
Friday, May 2nd, 2014
University of Missouri, Columbia, MO
Scientific presentations, including keynote speaker Dr. Stanley Rockson, followed by consensus-building sessions among all stakeholders.
Additional scientific presentations include Dr. Joseph Feldman, Dr. Janice Cormler, Dr. Chi-Ren Shyu, Nicole Stout, Dr. Gui DeSouza, and Dr. Jane Armer.

Please register by April 15th, 2014

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  • Binney4
    Binney4 Member Posts: 8,609
    edited March 2014

    This is a great opportunity to let our voices be heard on the formulation of treatment policies for LE. If anybody can make the meeting it would be well worth your while. There's no cost to attend and I believe meals are provided. Any takers?!!

    Binney

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  • carol57
    carol57 Member Posts: 3,567
    edited March 2014

    Binney and Kira, do we really believe that 'consensus-building sessions among all stakeholders' will take patient input seriously?  Is there precedent for this...an earlier meeting when patients' voices were welcomed and well considered?

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  • Binney4
    Binney4 Member Posts: 8,609
    edited March 2014

    Yes, actually there is. But the earlier meeting was at the very outset of this project (about 2008, maybe?) and has not been repeated since. OneBadBoob was there for that, as was BarbaraEllen from the RIBP forum. BarbaraEllen was disappointed that RIBP was not taken more seriously (so was I!) but perhaps in a way it is a separate issue. At any rate, she was the only one there representing the unique needs of the RIBPers. I hope OBB will be along to discuss her experience. It was…interesting!
    Binney

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  • OneBadBoob
    OneBadBoob Member Posts: 1,386
    edited March 2014

    Carol, patient input was absolutely heard at the last ALFP meeting.  And I was one of those very noisy patients!

    Think it would be well worth it for any patients to attend.

    While I would love to go it means traveling to Chicago or Dallas and having long layovers, and then coming back the next day for the same.  Not sure I want to put my LE through that now that things are settled down from my Hawaii trip.  

    But I highly recommend attending to anyone interested or in the area.

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  • LindaLou53
    LindaLou53 Member Posts: 929
    edited April 2014

    I have never been to a Stakeholder or consensus building session, but if all the planets are properly aligned....I do plan to attend the May 2 meeting in Columbia.  I registered today and have at least one other LE patient from our support group plus my LE therapist planning to attend.  I am printing the flyers to be distributed at our support group meeting next Wed and hope to find a few more patients willing to travel.  Columbia is less than a 2 hour drive from St. Louis county so can easily be done as a day trip.  I will try to provide some feedback here as to how the meeting went when I get back! 

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  • Estel
    Estel Member Posts: 3,353
    edited April 2014

    LindaLou - All of my docs are in St. Louis.  It's about a two hour drive from where I live.  Would it be possible for me to meet you in St. Louis (ha!, the song :) and ride with you to the event?

    I'm not sure I will be able to go … but let me know if riding with you would be a possibility.  

    I've never attended anything like this before and would like to go … either this year or something else like it in the future.

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  • vlnrph
    vlnrph Member Posts: 1,632
    edited April 2014

    That's great LL! Some of us from this site connected in person at an Ohio State program a couple years ago (I never saw so many women in compression gear at the same place before then).

    Our nephew is at Washington University in St Louis and, depending on when the semester ends, my sister may be going down to pick him up. It's probably more like mid-month or I would tag along and catch up with you on your drive that day...

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  • carol57
    carol57 Member Posts: 3,567
    edited April 2014

    I wish I lived nearer to Missouri.  And I would simply LOVE to meet LindaLou, who has given so much of her LE knowledge, her wonderful LE pictorial photos, and is a friend to all of us in the LE community.  Linda, I sure hope all those planets line up to make the trip possible for you. It was fun when vlnrph, tina337, beckysharp and others got together for the Ohio State University LE Summit in 2012.  The Framework meeting should be outstanding.

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