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From the Desk of NOAH

January 2008 - Posts

  • Texas Albinism Seminar Feb. 19, 2008: "A Story of Albinism"

    Friends of NOAH in the Houston, TX area are invited to a seminar at The Health Museum, 1515 Hermann Drive, Houston, TX  77004.

    Join NOAH parent and former Board member, Holly Mayer, and NOAH Scientific Advisor, ophthalmologist and geneticist, Dr. Richard Lewis as they present "A Story of Albinism", sponsored by Baylor College of Medicine and Texas Children’s Hospital.  

    Here are the pertinent details:

    Speakers:

      • Dr. Richard Lewis, Professor, Department of Ophthalmology, Medicine, Pediatrics, Molecular and Human Genetics At Baylor College of Medicine
      • Mrs. Holly Mayer, parent

    Topic:   A Story of Albinism

    Date:    February 19, 2008

    Time:   7:00pm- 8:15pm

    Location:   The Health Museum, 1515 Hermann Drive, Houston, TX  77004

    To Register:  no charge, but seating is limited. Please contact 832-822-4182 or fernbach@bcm.edu.

  • A Friendly Reminder From AOC Central


    Just a friendly reminder from your friends here at NOAH AOC Central. Over the past few months, we’ve got a number of e-mails in the AOC inbox that aren’t meant for us.

     

    Here is what is happening…. Many of you have indicated in your user preferences that you want to be notified via e-mail when a new post has been added to a conversation that you are involved in. When you get that notification, you hit “reply” in your e-mail software and write a thoughtful response to what you have just read. You assume when you hit “send” that you’ve sent that reply to the original poster. The problem is that e-mail you send goes only to the AOC inbox and not to the poster you want to communicate with.

     

    If you get an e-mail notification about a post to the AOC and you want to respond to that post, you have two options…both of which require you to go to the AOC homepage and log in.

     

    If you wish your replay to be seen by the entire AOC and the rest of the Internet community, you can go to the original post on the AOC and hit “reply.”

     

    If you wish your reply to be seen only by the poster to which you are responding, find the post you wish to respond to on the AOC, click on the poster’s user name, and click “Sned (insert poster’s user name here) a private message.”

     

    If you have any questions, let us know by e-mailing aoc@albinism.org and we’ll try to answer them.

     

    Thanks for using the AOC!

     

    -Brendan Cosgrove

    NOAH AOC Committee Chaira
  • Join Team AOC for NOAH's 2008 Bowl-A-Thon!

    This February 15-18 marks NOAH’s 3rd annual Bowl-A-Thon national (well, international when you come to think of it) fundraising event. Sure, NOAH functions from day-to-day with member dues and donations, but we can do so much more for the albinism community with your help in this event.

     

    The thing about the AOC is that we are all so spread out around the world that it is hard to have us all get together sometime that weekend to help NOAH by rolling the rock! But wait a second… this is the age of the Internet? Distance isn’t supposed to matter, right?

     

    It does indeed matter not! We’ve created a virtual team for the AOC using NOAH’s Bowl-A-Thon site at Events.org.  It is our goal to make Team AOC the event’s most successful in terms of sponsorships. We’ve set the bar high at a $10,000 team goal, but we know AOC members will come through with flying colors.

     

    The process is simple! Join Team AOC and then encourage your friends, family, and associates to sponsor you as a bowler on the weekend of February 15-18, 2008. You can join any of the number Bowl-A-Thon events being hosted throughout North America, or you can simply head out to the local lanes with some family and friends to roll the rock.  If bowling isn’t your thing, be creative and hold a dance-a-thon, a skate-a-thon, a trivia night, or some other fun activity to raise money for NOAH.

     

    The money raised will go toward programming at NOAH’s 2008 National Conference in Las Vegas, new parent support programs, advocacy projects, outreach, the HPS Network, Positive Exposure, and so much more that will help the albinism community on a daily basis.

     

    The Events.org site makes it easy and secure to donate with a credit card.

     

    Using the AOC costs you nothing. Volunteers maintain the community with physical plant supplied as an in-kind donation to the organization. Think of how much the AOC has meant to you. Maybe it was your first point of contact with the albinism community after your child was newly diagnosed with the condition and you were scared stiff. Maybe it has helped you to realize that you aren’t the only one with “really blond hair” and a propensity to hold a book really close to your face. Maybe it has helped you through the hurdles and pitfalls of getting a drivers license. Maybe it has opened doors to resources you never knew existed. Whatever the case, this is your chance to help give back to NOAH and the AOC.


    So, lace up those snazzy bowling shoes, make sure your bowling ball has a nice polish, and roll a turkey or three for NOAH!

     

    I invite you to join Team AOC!

     

    -Brendan Cosgrove

    NOAH AOC Committee Chair

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