From the Desk of NOAH

NOAH Adult Day 2011 ~ Saturday, September 24th

NOAH Administrator — Fri, 16 Sep 2011 21:17:00 GMT

You Have to Be There!

Have you ever heard someone tell a story with great enthusiasm and fondness? You could almost taste the excitement of the event, but you couldn’t quite feel it! It is nearly impossible to describe the unique sensation of sharing fellowship with those who share your condition. The only way to fully experience the joy, the excitement and the emotion is to be there.

NOAH Adult Days are a sure bet to create memories you’ll hold dearly for a lifetime.

Virginia Clark wrote of her experience at the 2007 Adult Weekend in New Orleans, “The group at our gathering were all strangers to me but became friends very quickly. They were all a joy to get to know.”

The inherent value of the fellowship of the albinism community is indescribable. You HAVE to be there to get it. Next weekend is your chance to make a magical moment. BE THERE.

NOAH Brings Adult Day 2011 to YOU!

NOAH Administrator — Thu, 11 Aug 2011 18:17:30 GMT

Attention Adults with Albinism - It’s Time for a Play Date!

As Margaret Mary says, “Adults need play dates too!” So mark your calendar for September 24th and come out and have some fun with other adults in the albinism community! This year, NOAH is hosting Adult Day in several locations in an effort to make the event more convenient and affordable so that more people can participate!

Visit http://events.albinism.org for more details.

Record-Breaking Success!!!

NOAH Administrator — Wed, 29 Jun 2011 12:19:19 GMT

NOAH is delighted to announce that the 2011 Bowl-a-thon was a record-breaking success! The Bowl-a-thon Committee and the board of directors extend a heartfelt thank you for the hard work, dedication and generosity of those who participated.

NOAH couldn’t have reached this incredible milestone without so many people who care. That phenomenal team:

held 38 events across the U.S. and Canada

expanded fundraising efforts to include Zumba, skating, pub trivia and the Warrior Dash

created 66 events.org pages for online donations

raised over $115,000 for NOAH

The money raised will allow NOAH to fund special projects, new initiatives and assist us as we continue to grow. To show our appreciation, we've created a video to celebrate this wonderful accomplishment.

Click here to see the video.

LET’S DO IT AGAIN NEXT YEAR!!!!

Chicago Area Mini Conference ~ Albinism and Vision

NOAH Administrator — Tue, 24 May 2011 17:15:00 GMT

REGISTER TODAY!

Saturday, June 25, 2011
9:30 am – 4:00 pm
Chicago Bar Association
321 S. Plymouth Ct., 5th Fl.
Chicago, IL 60604

Albinism and Vision

Learn about how people with albinism see, the latest in research and about new technologies to aid low vision. Join local and national experts for a day devoted to the low vision associated with albinism.

Speakers will include:

Dr. C. Gail Summers, MD

Professor of the Departments of Ophthalmology and Pediatrics at the University of Minnesota in Minneapolis and a Director of the International Albinism Center Research Team will join us via speakerphone

Dr. Tracy Matchinski, OD, FAAO

Assistant Professor of Optometry and Chief of the Low Vision Rehabilitation Service at the Illinois Eye Institute

Matt Bailey

An adult with albinism and author of the very popular and informative “How People with Albinism See” session

Kids will learn about their eyes from Dr. Matchinski and Matt Bailey before heading to the Field Museum for an afternoon of fun.

Dinner with NOAH’s Board of Directors in St. Louis

NOAH Administrator — Mon, 07 Mar 2011 23:11:56 GMT

Join NOAH’s Board of Directors and area friends of NOAH for this celebratory evening of good food, friends and fun. Learn how you can become involved in the building excitement for NOAH’s 2012 National Conference in St. Louis!
When: Saturday, April 9, 2011

5:00 PM Social Hour

6:00 PM Dinner

Where
Fourth Street Grill ~ Millennium Hotel
200 S. 4th Street
St. Louis, MO 63102

Cost
Member rates

$19.00 adults
$7.00 children 12 & under

Non-member rates

$22.00 adults
$10.00 children

Price includes beverage, tax, and gratuity
Awesome Adult Menu: Choose from Hamburger, Cheeseburger, Slow roasted strip loin, Roasted vegetable melt, Chicken Fontina, or Turkey stack sandwich with choice of fries, Parmesan chips or Asian slaw. Includes bottomless soda or iced tea.

Kickin’ Kids’ Menu: Cheeseburger and fries, Hot dog and fries, Grilled cheese and fries, Pasta Alfredo, or Chicken tenders and fries. Served with choice of milk or soda.

Register by April 1st.

NOAH Newsflash!

NOAH Administrator — Mon, 28 Feb 2011 15:44:00 GMT

NOAH keeps the albinism community 
 informed with Newsflashes!

Newsflash #1

Art Imitates Life - Tonight on NBC!

Tonight's episode of the new TV drama, Harry's Law imitates life with
an albinism storyline.

In this series staring Kathy Bates, Nate Corddry and Brittany Snow, a
former patent lawyer and a group of misfit associates form an
unconventional law practice. In the episode airing Monday, February
28th, Harry defends people with albinism seeking asylum from the
dangers of albino hunters in their native country. The storyline is
based on the killings of people with albinism and real-life asylum
cases in Tanzania and East Africa.

NOAH is aware of two pending immigration cases involving African
people with albinism seeking asylum.

Producers for Harry's Law contacted NOAH last fall for information
and leads for casting. NOAH members Jennifer Gill, KeNosha Robinson
and Victor Varnado appear in the episode.

Newsflash #2

Help Us Plan Some Fun!

Attention adults with albinism: Help us plan the 2011 Adult Weekend
by telling us what you think! Please take a few minutes to answer
this survey.  - http://bit.ly/NOAH2011survey. 

Let's make 2011 the best Adult Weekend ever!

The Amazing Rick Guidotti’s “On Beauty”: The Official Trailer

NOAH Administrator — Fri, 25 Feb 2011 13:03:03 GMT

ON BEAUTY is a call to action: a documentary film and social engagement campaign calling on each of us to change the way we perceive, judge and treat individuals with inescapable physical differences.

Former fashion photographer, Rick Guidotti, of Positive Exposure is committed to addressing public fear of difference through positive images and compelling cross-cultural stories. Through photographs and video taped interviews of hundreds of individuals living with albinism worldwide, Rick challenges stigma associated with difference, celebrating the richness of human diversity.

2011 McGowan Leadership Scholarship Application Now Available!

NOAH Administrator — Thu, 10 Feb 2011 03:32:50 GMT

The Michael J. McGowan Leadership Scholarship Award was established in 2008 on behalf of the National Organization for Albinism and Hypopigmentation (NOAH) to recognize leadership and empower young people with albinism. NOAH will award one scholarship annually to a student with albinism enrolled in an undergraduate program at an institution of higher education. This award aims to enhance educational opportunities for students with albinism while celebrating outstanding leadership qualities similar to those exhibited by NOAH's dedicated current and past leaders. The 2011 scholarship award will be $3,000.

See the 2011 McGowan Leadership Scholarship application for more information. Application materials for the 2011 McGowan Scholarship must be received by May 01, 2011.

Check out the NOAH Events Page!

NOAH Administrator — Thu, 10 Feb 2011 03:28:48 GMT

The enormous growth in local and regional NOAH activities is a tribute to the wonderful NOAH members who have chosen to step up and take the lead. When the events are scheduled, NOAH helps spread the word to encourage people to get together and enjoy the fellowship of the albinism community.

There are a number of NOAH activities on the horizon! Check out the up-to-date listing.

For more information about organizing local activities in your area, contact NOAH at info@albinism.org or call 800.473.2310.

NOAH Now! Special 2011 Bowl-a-thon Edition!

NOAH Administrator — Wed, 02 Feb 2011 02:21:24 GMT

You won’t want to miss the Special 2011 Bowl-a-thon Edition of NOAH Now!

Inside this Issue:

Complete List of 2011 NOAH Bowl-a-thon Events
Calling All Super Heroes!
2011 Blizzard of Cash
Super Hero Stories
Step by Step to Super Success

Remember, only NOAH members receive the fabulous full-color magazine Albinism InSight. Join NOAH or renew your membership today by visiting http://store.albinism.org. NOAH membership is the key to ensuring that you receive Albinism InSight, member-only mailings, event member discounts, and much more!

Big Apple Circus of the Senses

NOAH Administrator — Tue, 01 Feb 2011 19:29:59 GMT

New Hampshire/Massachusetts Get Together!

April 7, 2011, at 11:00 AM

City Hall Plaza, Boston, MA

Let's go to the circus! Local children from the albinism community are invited to share in the excitement of the Big Apple Circus of the Senses! We can make a day of it! We'll enjoy the circus let's meet for lunch at Quincy Market, just a quick walk from City Hall Plaza.

Tickets are complimentary, but must be requested by February 10th so that we can sit together. If you'd prefer, you may request tickets yourself.

Please contact Patricia at tnd33@comcast.net to join the group for this fun event, or to express interest in future gatherings. Let's provide fun opportunities for our children to build life-long friendships!

SAVE THE DATE! 2011 NOAH Mini Conference New York

NOAH Administrator — Fri, 28 Jan 2011 01:04:40 GMT

2011 NOAH Mini Conference - New York
Saturday, March 19, 2011

8:30 AM - 4 PM
Long Island Marriott
101 James Doolittle Boulevard
Uniondale, NY 11553
Westbury Station LIRR

This informative conference will include:

A report on the latest in albinism eye research from Dr. Murray Brilliant
All you need to know about skin care from Dr. Aisha Sethi
Adult Career panel
Adult and parent discussion groups
IEP session
Genetics of albinism
HPS overview

Affordable Member Registration Fees!

Mini-conference registration includes educational sessions, discussion groups, children’s activities and lunch.

Adults:

Members: $35 per attendee 18 & older
Non-Members: $45 per attendee 18 & older

Children:

Members

$25 per child (ages 5- 17) - includes circus ticket!
$10 per child (2-4 or not attending the circus)
Free under age 2

Non-Members

$35 per child (ages 5-17) - includes circus ticket!
$20 per child (2-4 or not attending the circus)
$10 under age 2

Additional information will be sent in February.

Calling All Super Heroes…

NOAH Administrator — Tue, 25 Jan 2011 16:02:00 GMT

Look! Up on your computer screen! It's a list! It's a complete up-to-date list!

It's the NOAH 2011 Bowl-a-thon Super Hero List!

Faster than a rolling bowling ball!
More powerful than a phonebook!
Able to tell you all you need to know in a single place!

It’s the NOAH Bowl-a-thon!

Rolling down the lanes February 25-27, 2011, check the up-to-date list for an event near you! You’ll find everything you need to know to participate in a bowl-a-thon event so look for an event near you and join the albinism community for fellowship and to support a good cause! Check back often to learn about new events and notify us if you’re planning an event.

It’s not too late to be a NOAH Super Hero ~ Join the Training Class of 2011!

If you would like to plan an event, let NOAH help you begin your transformation into a Super Hero!

Join Us! Monday, January 31, 2011, at 9:00 PM ET/ 6:00 PM PT for Super Hero Training!

Ask questions about hosting your own bowl-a-thon;
Hear event suggestions and ideas from NOAH's veteran party planners;
Discuss strategies for planning, promoting and making the most of your event;
Attention first time event planners: Learn how you could receive a FREE bowl-a-thon t-shirt or cap for setting up a page at events.org/noah!

RSVP to bowlathon@albinism.org today!

NOAH Teams up with the Hadley School for the Blind for a webcast…

NOAH Administrator — Thu, 13 Jan 2011 15:19:52 GMT

All About Albinism
Friday January 21, 2011
11:00 AM CT

For those who are new to NOAH, this session is an excellent introduction to and overview of albinism. All About Albinism is a good review for NOAH veterans and a great resource for family and friends who are interested in learning about albinism. Parents may wish to let their children’s teachers and other vision professionals know about this informative webinar. Continuing education credit is offered (see below).

Join Seminars@Hadley for a free* 60 minute discussion all about albinism. Senior Vice President Dawn Turco will question a panel of experts on several aspects of the condition including; the genetics of albinism, the low vision associated with albinism, prominent psycho-social issues people with albinism and parents of children with albinism face and educating a child with albinism. The panel will also address the myths and misconceptions about albinism and talk about NOAH (National Organization for Albinism and Hypopigmentation).

Panelists include Sheila Adamo, Chair of the NOAH Board of Directors (mother of four, 11 year old son Joey has albinism), Murray Brilliant, PhD, Director at the Center for Human Genetics at the Marshfield Clinic Research Foundation, Susan Dalton, M.S.Ed., CVRT, Transition Specialist (mother of two grown children with albinism), Kelsey Thompson, immediate past Chair of the NOAH Board of Directors (a person with albinism) and Michael McGowan, NOAH Executive Director (a person with albinism).

*Listening to the seminar is free of charge. There is a US $25 fee associated with completing the seminar for credit (1 CE hour). Professionals interested in receiving continuing education credit will be required to successfully complete a quiz and brief survey before a certificate is issued. (ACVREP approval pending)

D.C. Area NOAH Ice Skating Outing

NOAH Administrator — Wed, 05 Jan 2011 21:21:47 GMT

You're invited!

Join us for an afternoon of fun and fellowship with D.C. Area friends of NOAH!

Ice Skating at The National Gallery of Art Sculpture Garden

The National Gallery of Art Sculpture Garden Ice Rink is located on the National Mall at 7th Street and Constitution Avenue NW.

Join Us Saturday, January 22, 2011, at 11:00 am!

Admission (two-hour sessions, beginning on the hour)

$7.00 adults
$6.00 seniors (age 50 and over)
$6.00 students (with school ID)
$6.00 children (age 12 and under)

Skate and Locker Rentals

Skate rental: $3.00 (ID required)
Locker rental: $0.50 ($5.00 deposit required) - there will most likely be enough people sitting around watching that this won't be necessary but good to know!

After skating, we'll enjoy lunch at the Pavilion Cafe

With a panoramic view of the Sculpture Garden, the Pavilion Cafe serves freshly made wraps, sandwiches, gourmet pizzas and salads. Coffee, tea, hot chocolate, wine and beer are also available.