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Thread: Chapel Hill, NC - discussion on unmet needs in lupus treatment

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    Default Chapel Hill, NC - discussion on unmet needs in lupus treatment

    Hello everyone,

    I work at the University of North Carolina at Chapel Hill and I'm planning a lupus awareness event for a group of researchers at UNC. The event is a one hour panel meant to highlight what it's like to live with lupus, what the current treatments (and side effects) of lupus are, and how researchers at UNC are working to better understand the disease and develop new and more effective treatments.

    I've been trying unsuccessfully to locate a patient with lupus or a patient advocate who understands what it's like to live with lupus, but it is not easy to do because of patient privacy issues. The event is coming up this Friday, May 8th from 12:00 to 1:00 at the UNC-Chapel Hill medical complex in Chapel Hill, NC.

    Do any of you know anyone in the Chapel Hill, North Carolina area who would be willing to be a panelist at this event. I envision this person speaking for 10 to 15 minutes with a group of about 20 young graduate student researchers about what it is like to live with lupus. I want the students (many of whom research lupus and other autoimmune diseases) to see the human side of this disease. After the patient (or family member or advocate)speaks, a basic scientist and clinician who study lupus will talk about what they are doing at UNC to improve lupus treatment.

    If you would like to participate, or if you know of anyone who would, please email me at pdb[at]unc[dot]edu or I can give you my phone number via private message. Thank you very much,

    Patrick Brandt
    Last edited by rob; 05-04-2009 at 02:30 PM.

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    hi Patrick,

    what a great cause you are organizing. I don't know anyone in the chapel hill area. We do have a member in charlotte, but i don't know how she is feeling these days, or if she would be able to help. I am sure she will be along if possible.

    did you try contacting a rheumatologist in the area to see if one of their patients would be able to participate?

    If i still lived in the area, i would certainly volunteer.....hope you find someone who can explain the disease from a personal perspective. Everything that increases awareness results in benefits for all of us.

    good luck,
    Phyllis

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    Hi Mountain Dreamer,

    Thanks for your reply and your kind words. I did try talking to rheumatologists at UNC and at Duke, but they weren't able to provide me with any of their patients' names due to privacy issues. There is one doctor at UNC who said she would ask her patients if they wanted to participate, but she hasn't gotten back to me for a couple of weeks. I imagine it is not at the top of her list to ask patients.

    If anyone would be interested in participating in an event like this on a day other than this Friday, I would gladly reschedule in order to benefit from the personal perspective a patient could provide.

    Best,
    Patrick

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    Patrick,
    What about having all of us participate via this forum? Perhaps you could generate some questions for us to answer, just like Ashley, (one of our members) did for her research project. I know that I would be glad to answer them for you and the grad students.
    BTW - My daughter lived in Durham while she was working on her PHD at Duke. It is a lovely part of the country.
    Marla

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    Hi I'm from Charlotte. Lupus Piedmont is the NC chapter of LFA. Christine John is the President and CEO. The headquarters are in a Charlotte. They have records of all the members in NC. But I don't know the what her rules are about contacting people to speck. I know some members speck in Charlotte.

    NC Lupus Foundation of America (LFA) Piedmont chapter.
    (704) 849-8271 and Toll free (704) 849-8271 Christine John
    www.lupuslinks.org



    Christine John had a big Lupus walk in Raleigh April 19. So I'm sure she knows people in that area.


    My niece's just graduated from Pharmacy school at Chapel Hill last month.
    But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint. Isaiah 40:31

    Take Care,
    Becky

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    I think the forum Q/A Session would be great. I can even form some questions and make a new thread that we all can answer and then we can e-mail him. Let me know via here or PM(Private Msg) if you all would like me to do that.
    God Bless you always,

    Maria

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    hi patrick,

    wrightrs gave you some good local resources, and i really like marla's and maria's idea of an on-line conference. I would be available to participate in this. I often go to charlotte, but not necessarily the raleigh area. If we can work everything out, i would consider a trip to raleigh....i love all of north carolina.
    Phyllis

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