March 2008 - Posts

• NOAH New York Chapter to Hold Meeting 3/29

  NOAH’s New York chapter will be holding a chapter meeting in conjunction with next weekend’s 15th annual HPS Network conference at the Marriott on Long Island. A 10:00 a.m. meeting (Saturday, March 29, 2008) will be followed by lunch and an afternoon of education, discussion, and fun as part of the HPS event. There is an optional dinner to follow at the HPS conference. For more information on the New York chapter event, e-mail Lori at NOAH Central. For more information on the HPS conference (March 28-30, 2008), visit our friends at the HPS Network. Posted Mar 24 2008, 09:00 PM by Brendan Cosgrove with no comments

• Appreciating Art Through TOUCH!

  I have to admit that I’ve never been much of an art hound, but I think that has less to do with my visual impairment and more to do with my lack of patience. After all, they tell me you have to actually stop and think in order to appreciate art. All kidding aside…there is a really neat upcoming event that came across the desk at NOAH Central that I thought we should tell you about here.   Obviously, we tend to think of art (with the exception of musical art) as something that is dependant upon vision in order to be appreciated. The visual impairment that goes along with albinism can make that appreciation rather difficult. Now, a variety of Philadelphia-area organizations are teaming up with some artists and art educators to show us just how art can be appreciated through the other senses…in particular touch.   “TOUCH, An Art Experience for the Senses” is coming to Philadelphia’s DaVinci Art Alliance between Saturday, April 5 and Saturday April, 26. In addition to the gallery exhibits, there are workshops and other activities are available.   More information is available on through the DaVinci Art Alliance, and we’ll try to make PDFs of relevant material available here shortly.     Posted Mar 24 2008, 08:34 PM by Brendan Cosgrove with no comments

• 2008 NOAH National Conference Registration Information Available!

  I have to say, it really hit me last night just how close we are to NOAH’s 12th National Conference in Las Vegas. It hit me so hard that I promptly emptied my frequent flier account of 25,000 miles to procure my ticket for said event. No matter that I have to go from Chicago to Houston to Las Vegas in order to get there! It is done and I’m going! It’ll probably hit you too when you soon go to your mailbox and pull out the beautiful conference registration packet that was put in the mail earlier this month (which includes a color cover photo of yours truly posing with Ed Dalton. Mr Dalton, as per usual, is looking debonair in his shades. As for me, well...don’t let that picture stop you from coming !). For those of you who just can’t wait to get started with you conference travel planning (I certainly couldn’t as evidenced by the opening paragraph of this blog post), you don’t have to wait for the mailman to conquer wind, rain and snow. We’ve made a PDF of the conference registration packet available online to get you started. You might want to hop to it because the registration price goes up after May 9th. And, if you’re like me, you won’t want to wait to see all the cool things that the conference committee has planned! The Riviera has also made it really easy to reserve your hotel room for the conference. They’ve made a secure online reservation page available specifically for NOAH conference attendees. Its one of two ways that you’ll be able to make sure you take advantage of NOAH’s special conference rates. The other way is by calling the hotel directly at (800) 634-6753 and mentioning NOAH. The Riviera has made the conference rates available from the Sunday before to the Tuesday after the conference, so it is easy to make a full-blown vacation out of the trip! Don't forget to make your hotel reservations by Friday, June 20, 2008 For those of you who have never been to a NOAH conference before, it is really hard for me to describe it to you in any other words except “magical.” It is the one time where the entire albinism community comes together to learn and share. And, well…it is just a lot of fun, too! This year, we’ve got the added bonus of Las Vegas (600 visually impaired people walking into a casino… That should be, errr, interesting….). I’ve made tons of friends at the conferences that I’ve attended throughout the years, and I can’t wait to see them this summer in the Nevada desert. So, yeah… I’m not anxious at all given that we’re almost four months away and I’ve already got my plane tickets! See you in Vegas! Brendan Cosgrove NOAH AOC Committee Chair Posted Mar 19 2008, 01:24 PM by Brendan Cosgrove with 1 comment(s)

• Recommend Your Doctor to Friends in the Albinism Community

  Love your low vision optometrist? Overjoyed with your ophthalmologist? Indebted to your dermatologist? NOAH wants to hear about it! One of the most common requests made of NOAH is to provide the name of a doctor experienced in treating patients with albinism. In response to that request, with your help, NOAH is starting a “Recommended by a Friend Resource List” of medical professionals experienced in treating patients with albinism, so that NOAH will be able to provide an answer when asked that important question. Contribute to this list by using the new Medical Professional Survey tool on our website at www.albinism.org/RecommendADoc.html . Our friends in the larger albinism community will greatly benefit from your recommendation. To recommend more than one professional, please complete the survey multiple times (one for each professional).   If you have any questions about the resource list or the online survey tool, please contact Lori at info@albinism.org or 800.473.2310. Thank you in advance for sharing this important information with the greater albinism community. Posted Mar 11 2008, 12:01 PM by NOAH Administrator with no comments

• Would you like to hear about albinism research?

  Did you know that NOAH maintains a confidential list of more than 850 members willing to have information about research projects and studies sent to them? Are you on that list? Encouraging research projects that will improve the understanding, diagnosis and management of albinism has always been part of NOAH's mission. In the fall of 2004, NOAH’s Board of Directors adopted a formal research study policy to facilitate connection between researchers and the albinism community. Here’s how the process works: · NOAH accepts requests from researchers and scientists for potential research projects. · The NOAH Board of Scientific Advisors reviews the requests for the sole purpose of determining whether or not such projects are appropriate. · If the Board of Scientific Advisors determines that a project is appropriate, then NOAH may send out information relative to the study to those members who have expressed a willingness to receive such information. · Researchers will not be given mailing lists or personal information about any NOAH members. Would you like to be included on the list to hear about albinism research? Agreeing to receive information about research projects is separate from agreeing to participate in any particular study. It’s up to each individual to review the research project information received and decide on their own whether to participate or not. Add your name to the research list today! If you are willing to receive information about research projects, email info@albinism.org with the your name, mailing address, and year of birth of each person with albinism in your family, and we’ll add you to the list. If you have any questions about this policy, please contact NOAH at 1-800-473-2310 or info@albinism.org. Posted Mar 11 2008, 11:41 AM by NOAH Administrator with 11 comment(s)