Don't miss your chance to register for NOAH's 12th National Conference in Las Vegas at the special early bird discounted rate!

Save big and spread-out the payments!

Waiting for your tax incentive check or trying to pull together the funds to make the trip to Vegas? Did you know that you can take advantage of this great discounted registration rate and spread out the fees over three payments using NOAH's all-new credit card installment plan? Pay 1/3 at the time of registration, 1/3 on May 30th, and 1/3 on June 30th.

What are you waiting for?

Download your registration packet today and submit your registration forms to NOAH by Friday May 9th. Don't delay, registration fees increase by $25 per attendee beginning Saturday May 10th.

Ways to Register

Registration forms can be mailed to NOAH at PO Box 959, E. Hampstead, NH 03826-0959 or faxed to 800.648.2310.

See you in Vegas!

Where the albinism community meets to learn and share....make your plans to be there!

Are you a family with a child with albinism?

If so please join us for an afternoon of time for parents to chat and kids to play.

When: Saturday, June 7th from 10am-1pm

Where: Hosted at a local family's home in King of Prussia, PA

Please bring a snack, food or drink to share with the group. We are planning to be outdoors so remember the sunscreen, sunglasses and hats. Please RSVP to knk828@aol.com by Saturday May 24th with names of those attending, ages of children & what food or drink you are able to bring, and you will be provided more information about the location.

Directed by Yulia Mahr, 'Butterfly" is short documentary about a young Scottish swimmer with albinism called Gemma Sherry.

The film is showing as part of a series of shorts called All Truisms. Tickets and more information about this film are available through the  Tribeca website.This film will be showing in competition at the Tribeca Film Festival in New York in the coming weeks.

The screening times are: 

• April 24th 4pm (AMC Village VII)
• April 26th 12.00pm (AMC Village VII)
• April 29th 7.30pm (AMC 19th Street East)
• May 1st 5pm (Village East Cinemas)
• May 4th 1pm (Village East Cinemas)

'Butterfly' was nominated for a BAFTA (Scotland) and received its world premiere at the Edinburgh Film festival. It has gone on to play around the world, and apart from New York can next be seen in North America, at the DOXA Documentary Film Festival in Vancouver.

New and Improved Program for our 6 mos. to 4 year olds!  

Age Appropriate Groupings and Activities

• Safe, positive and nurturing environment where each child can have fun and make new friends.
• Structured activities and free play time
• Theme Days:
              Wild and Crazy Beach Party           
              Fun with the Arts (arts and music/movement)

Safety Procedures

• CPR and First Aid certified Team Leaders
• RN’s on site
• Security bracelets issued to parent and child upon on-site registration. 
• Digital photograph of parent and child taken at check-in.

Qualified Team Leaders and Caregivers

• Program coordinated by experienced, certified preschool director/teacher
• Staffing by professionals experienced in the field of visual impairment including: TVI’s, early intervention specialists, O&M specialists

Outstanding Caregiver to Child Ratios

• 1:2 ratio for children 6 months through 11 months old
• 1:3 ratio for children 1 through 2 years old
• 1:5 ratio for children 3 through 4 years old

Free and open to the public

April 24, 2008
7:00 PM - 9:30 pm
Illusion Theater
528 Hennepin Ave.
Minneapolis, MN

April 25, 2008
Noon - 1:30 PM
Mayo Auditorium,
University of Minnesota
Twin Cities Campus

“In the Eye of the Beholder” will focus on the unique perspective of people with disabilities. Each program will include a presentation, audience discussion, reception, and photograph exhibit by Rick Guidotti, founder of Positive Exposure—a nonprofit organization whose innovative programs challenge the stigma associated with difference and celebrates the richness of human diversity. Positive Exposure encourages participants to ask questions such as: What does a genetic disease look like? How do we define disability? How do we form our perceptions of disease and disability? What do others see when they see someone ‘affected’ with a disease or disability? These are among some of the most challenging questions students and practitioners in all areas of health care must face.

For registration, visit www.bioethics.umn.edu; or contact the Center for Bioethics at 612-624-9440; email: bioethx@umn.edu.

Sponsored by the University of Minnesota’s Institute for Human Genetics, the Center for Bioethics, and the Illusion Theater; Funded by a grant from the University of Minnesota Consortium on Law and Values in Health, Environment & the Life Sciences

NOAH’s New York chapter will be holding a chapter meeting in conjunction with next weekend’s 15^th 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.

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.

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

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.

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, please reply to this message with the 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.

Imagine Your Luck!

Registration Packets for NOAH's 12th National Conference are in production and will be mailed to NOAH members in mid-March.

If you are a current NOAH member and do not receive your packet by March 31st, please email info@albinism.org. The early bird registration deadline will be May 9, 2008.

Hope to see you in Vegas July 10-13, 2008!

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.

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

This February 15-18 marks NOAH’s 3^rd 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

NOAH's 25th Anniversary Celebration

Philadelphia, Pennsylvania

Saturday November 3, 2007

Join NOAH's board of directors, past leaders, members and friends as they gather in Philadelphia, the site of the organization's founding in 1982, to mark NOAH's 25th anniversary. Download registration information/form at http://www.albinism.org/25year/25thRegistration.pdf.

LOCATION

Philadelphia Airport Hilton
4509 Island Avenue Philadelphia, PA

COST

$40.00 Adults ~ $20.00 Children 2-11

ADULT MENU

Celebration includes light refreshment reception and complete banquet dinner including fresh fruit appetizer, Caesar salad, bakery fresh rolls and creamery butter, choice of entree , chef's choice of accompaniments, and gourmet French apple tart dessert for dessert. Freshly brewed coffee, decaffeinated coffee and specialty teas will also be served.

CHILDREN'S MENU

Children ages 2-11 have the choice of chicken fingers or vegetarian pasta.

REGISTER TODAY! ~ Deadline extended to October 19th

You MUST register by the October 19th deadline to be a part of this once in a lifetime celebration. Simply complete the registration form and return it with payment to NOAH prior to Friday October 19th.

LODGING

For those traveling to the celebration, NOAH has reserved a limited number of sleeping rooms for Friday November 2nd and Saturday November 3rd at $109 single and $119 double. Make your reservations before Friday October 19th by calling 1-800-HILTONS (445-8667) anytime or 215-365-4150 , 8 AM - 5 PM (Eastern Time) Monday through Friday, and ask for the NOAH rate.

SCHEDULE

4:00pm Optional Local Meeting
5:00pm Reception
Light Refreshments/Cash Bar
6:30pm Banquet Dinner
7:00pm Anniversary Program
8:00pm DJ/Dancing

LOCAL ORGANIZATION MEETING

Area Pennsylvania NOAH members are invited to attend a local organization meeting prior to the reception at 4:00pm.