Home Forums All Categories Articles of Interest Key Concerns about research for Bladder Cancer

  • 's avatar

    Guest
    July 9, 2009 at 7:38 pm

    Everyone could join Facebook and then go to Cynthias Bladder Cancer site and join and then you get a marker on your page and then ask all your friends to do the same……maybe it will eventually gain some attention?? I’ve got it on mine….Pat

  • cynthia's avatar

    cynthia

    Administrator
    July 9, 2009 at 3:16 pm

    Julie and Pat,

    There are plans in place to do many of the things you are talking about. As you know we are a young organization we only incorporated in 2008 and it has to be a step at a time. Right now we are in the middle of doing a redesign of the site. Once that is up we will be starting our advocacy advisory work group. I hope that all of you that have the same commitment that we do to blc will join us. As for donations we had to wait until we received out 301(c)(3) status and work out the law situation in all fifty states before we could start raising funds. That has been done and a donate button will be on the updated site. There is also money in this year’s budget for a brochure and as part of the advocacy work group I will ask that they set up a subcommittee to help develop it from a survivor’s point of view.

    We are having our annual board meeting this weekend where we will be projecting this year’s goals and how we plan to reach them. When you look at the ABLCS as it is now realize you are only looking at the tip of the iceberg. As soon as the new site is up I will be starting a Presidents post to update as well as a opt in newsletter to give everyone an chance to be a part of what we will become.


    Cynthia Kinsella
    T2 g3 CIS 8/04
    Clinical Trial
    Chemotherapy & Radiation 10/04-12/04
    Chemotherapy 3/05-5/05
    BCG 9/05-1-06
    RC w/umbilical Indiana pouch 5/06
    Left Nephrectomy 1/09
    President American Bladder Cancer Society
  • julie's avatar

    julie

    Member
    July 9, 2009 at 3:13 am

    Many of us have been saying the same thing as this article. I am glad the professional community is speaking up.
    You are right Pat it would have been good to have ABLCS as the same table as all the other players.

    I would like to put together a group of members here who are interested in advocating for more attention to be paid to
    Bladder Cancer both in terms of research dollars and educating the public. I would like all the urologists who treat Bladder
    Cancer to know about ABLCS and refer survivors to our organization. I would like to have brochures in all their offices that gives
    basic information about living with Bladder Cancer and a way of contacting ABLCS.

    All these efforts do need people and dollars. I know that some have asked that donations be made to ABLCS in memory of their loved
    ones. We need other ways of raising money to help fund the site and the expansion of our services. I am not very knowledgeable about how to
    approach potential donors re request big sums of money but I can learn.

    If anyone here would like to be involved in promoting ABLCS please let us know.

    Julie Bonser


    Volunteer Coordinator
    ABLSC

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