What is life really like in the albinism community?

This is your chance to provide insight based on your personal experience. To learn more about the albinism community, NOAH has compiled a series of questions about children and adults living with albinism.

Questions include topics such as accommodations used in school and assistive technologies used in the workplace; education levels and careers; demographic information such as age, race and marital status as well as the modes of transportation people with albinism use.

NOAH will share the results of this survey with the albinism community online, at the national conference this July in Washington, D.C., and in a future issue of Albinism InSight.

The survey will only be available until March 31, 2010, so please take a few minutes to complete the online survey.

No one can tell it like you can so we hope you will take this opportunity to share your knowledge! Your help in this project is greatly appreciated.

NOAH

Find an Event Near You or Plan Your Own!

Too Busy? You can still make a difference by making a contribution to your local team. No amount is too small! Together we can help keep NOAH Rolling!

Get the latest team listings/information at http://www.events.org/noah

ARIZONA
Monday, February 15, 2010
6:30 - 8:30 PM
Tucson Bowls
7020 E. 21st Street
Tucson, AZ
RSVP: Andrea at aarena02@yahoo.com!

ILLINOIS
Team Adamo
Tivoli Lanes
938 Warren Ave
Downers Grove, IL
Saturday, February 20, 2010
1:00 - 3:30 pm
RSVP: Sheila at 630.420.6909 or sadamo@albinism.org

TEAM MCGOWAN
IC Bowling Alley
Immaculate Conception School
7263 W. Talcott Ave
Chicago, IL 60656
Saturday, March 6, 2010
7:00 - 11:00 pm
RSVP: Mike at 773.763.5571 or president@albinism.org

PUB TRIVIA NIGHT
The Celtic Knot
Saturday February 20, 2010
7:00 pm
626 Church St, Evanston, IL; CTA Purple Line (Davis St.)
RSVP: Kelsey at kthompson@albinism.org

KANSAS
KANSAS CITY BOWLS
Saturday, February 20, 2010
1:00 - 3:00 pm
College Lanes
10201 College Blvd
(69 & College)
Overland Park, KS
913-451-4799
RSVP: kc@albinism.org

LOUISIANA
OWEN’S BOWLING BUDDIES
Sunday, Feb 21, 2010
2:00 PM
Thunder Bowling Alley
Thibodaux, LA
RSVP: christinemb689@msn.com

MASSACHUSETTS
BOSTON AREA
Join Team Kelly
Saturday, February 20, 2010
1:00 - 4:00 pm
Lucky Strikes (Jillian’s)
Ipswich St
Boston, MA
Please RSVP if you can join us, jodi.kelly@verizon.net!

Norwood Bowl-a-thon
Join Team Bunker!
Saturday, February 20, 2010
1:00 pm
Norwood Sport Center
65 Cottage St East
Norwood, MA 02062
Pizza to follow at Papa Ginos!
Please RSVP if you can join us, susan.bunker@yahoo.com!

MICHIGAN
ThunderBird Lanes
400 W Maple Road
Troy, MI 48084
http://bowlthunderbird.com/
Saturday, February 20, 2010
1:30 - 3:30 pm
Cost $10 per person for 2 games, shoes, pizza, pop. Additional donation to NOAH requested but not necessary.
RSVP: kp15@chrysler.com by Feb 10

MINNESOTA
Twin Cities Bowl
Saturday, February 20, 2010
3:00pm
Southtown Lanes
Bloomington, MN
RSVP: Sue at 952-830-1515 or gsmckinley@comcast.net!

NEW YORK
BROOKLYN BOWL
Saturday, February 20, 2010
12:30 - 3:00 pm
(bowling starts at 1:00 pm)
http://www.brooklynbowl.com/
81 Wythe Avenue and North 11 Street; L train to Bedford Avenue - 1st stop in Brooklyn. Free street parking.

*Families welcome!
*50/50 Raffle and Fabulous Prizes!!!
*$30 gets you 2 hours of bowling (includes shoes) and a spread of yummy sandwiches and snacks from “Blue Ribbon”. Additionally, a full menu of food and drink are available. (including six point beers - yum).
*RSVP by Feb 10th to Brooke at info@BrookeFox.com

Long Island BOWLS
Hosted by Carol and Daniel Carley
Saturday, March 6, 2010
12:00 - 2:00 pm
RVC Lanes
100 Maple Avenue
Rockville Centre NY 11570
$20 a person.  Includes bowling, shoes and a little something to eat.
RSVP: to 516-766-2489 or ccarley@albinism.org

OHIO
Cleveland Area Bowl-a-thon!
Sunday, February 21, 2010
1:00 pm
North Woods Lanes
10435 Valley View Road
Macedonia, Ohio 44056
330-659-4085
www.northwoodslanes.com
RSVP: Renee at drjtpiper@aol.com

PENNSYLVANIA
Philadelphia Area Bowl-a-thon!
Saturday, February 27, 2010
1:00 to 3:30 pm
Facenda Whitaker Lanes
2912 Swede Road
Norristown, PA 19401
(near King of Prussia, PA)
RSVP: Pam at 610-574-8905 or pmcgonigle@albinism.org by Monday, February 15th

SCRANTON Jeopardy Game Day!
Sunday, March 7, 2010
2:00 to 4:00 pm
Marvelous Muggs
20 Montage Mountain Road
Scranton, PA 18507
www.marvelousmuggs.com
Games and sweet treats for ALL!
RSVP: mcampbell@albinism.org

SOUTH DAKOTA
ABERDEEN
Sunday, February 21, 2010
5:00 - 8:00 pm
Village Bowl
1314 8th Avenue Northwest
Aberdeen, SD 57401
http://www.thevillagebowl.com/
RSVP: Kelli Meister at 605-216-4382 or rkmeister@nvc.net

SIOUX FALLS AREA
Saturday, February 20, 2010
1:30 - 5:30 pm
Ten Pin Alley
I-90 to Exit 387
Hartford, SD 57033
Pizza, Pop, Bowling, Wii Bowling, and Raffles!
Childcare provided on site.
RSVP: Samantha Rinder at 759-6153 or SLR0831@AOL.COM

TENNESSEE
Team Tennessee
Saturday, February 13, 2010
6:00 pm
Strike N Spare at Hillwood Circus World
3710 Annex Ave
Nashville, TN 37209
http://www.strikeandsparebowling.com.
RSVP: akwright04@yahoo.com

TEXAS
Hurst Lanes
720 West Pipeline Road
Hurst, TX 76053
Saturday, February 20, 2010
2:00 - 4:00 pm
RSVP: noah.ntx@albinism.org

Frisco - Strikz
8789 Lebanon Rd
Frisco, TX 75034
Sunday, February 21, 2010
4:00 - 6 pm
RSVP: gibsons@friscoisd.org

Houston -Armadillo Lanes
10055 Fuqua
Houston, TX 77089
Saturday, February 20, 2010
1:00 - 4:00 pm
RSVP: stxnoahmom@yahoo.com

Ennis-All Star Bowl
2302 West Ennis Ave
Ennis, TX 75119
Sunday, February 21, 2010
2:00 pm
RSVP: carolina-montoya@att.net

Austin - Highland Lanes
8909 Burnet Road
Austin, TX 78757
Saturday, February 20, 2010
1:00pm - 3:00 pm
RSVP: kathi.zuiga@comcast.net

San Antonio - University Bowl
12332 IH-10 West at DeZavala
San Antonio, TX 78230
Sunday, February 28, 2010
2:00 - 4:00 pm
RSVP: aarena02@yahoo.com

iGive is running a special promotion through 11:59am CST Thursday January 21st.

This promotion is a race to 5,000 new iGive members. For each person who joins iGive using the special link and does just one qualified web search before noon Thursday, iGive will give NOAH a dollar (up until 5,000 new members across all causes has joined).  No purchase necessary.

Additionally, if after joining and conducting your first search, if you search more (or buy something at an iGive store) you’ll earn even more money for NOAH.  Right now, iGive is donating a special $.02 per search and a bonus $5 for your first purchase plus the usual percentage.

http://www.igive.com/welcome/warm_reg_promo.cfm?m=425926

So help spread the word and earn cool cash for NOAH!

iGive is a free service which enables members to earn money for their favorite cause whenever they make an online purchase or search the web.

Hosted by the DuBois Family in Arlington, VA

Join us Sunday December 13th - from 4pm-6pm

We'll have chili (veggie and meat), a ham, and a variety of beverages.  You are welcome to bring a side dish or a dessert - but it's not necessary.  We'd really just like to see everyone!

Tanzania Collection: We will be collecting hats with brims, sunscreen, sunglasses and lightweight long-sleeve shirts for people in Tanzania.  Also, our neighborhood is having a bonfire/caroling event that night at 7pm -- which everyone is welcome to stay for - it is always lots of fun.

Please email Susan at susan.dubois@uspto.gov to RSVP or for more information. Please let us know that you’ll be joining us, along with how many adults/kids. 

Go Cruisin' with NOAH March 13-20, 2010!

Join NOAH on the first ever NOAH Cruise, the first of its kind vacation opportunity for the albinism community. March 13-20, 2010, you can go cruisin' with NOAH! Cruises International is offering a fun 7-night island treasures & ancient temples cruise aboard the MSC Poesia departing from Ft. Lauderdale, FL. A fun excursion, with kids 17 and under cruising for FREE, this vacation doubles as a fundraising opportunity for NOAH- NOAH can earn a cool $2,000 if friends of NOAH book just 10 cabins for this cruise. For more details, including cabin prices and reservations, check out this special cruise flyer. Final payment must be arranged by December 18th for NOAH to receive credit.

You’re Invited! Join Us Saturday, December 12th

Heights Library
1302 Heights Blvd
Houston, TX 77008
832-393-1810
http://www.hpl.lib.tx.us/heights-neighborhood-library

3:30pm Potluck/Social Time
6:00pm Lights in the Heights

Join us for good food, good friends, and fun, with our holiday potluck and group walk through “Lights in the Heights”.

Check it out at http://www.woodland-heights.org/Events/LITH
RSVP/Questions: Email stxnoahmom@yahoo.com or call 800-473-2310.

Saturday - December 12, 2009
12pm to 3pm

Frazier Residence
4824 Crumbcake Drive
Keller, TX 76244

Please RSVP to Cyd at NOAH.NTX@albinism.org

Bring a favorite dish to share, and join in for some good food, great holiday fun, and socializing.

Celebrate the Holidays with NI NOAH!

WHEN:     Sunday December 13th from 1:00-5:00pm

WHERE:    LaGrange Park District, 536 East Avenue,  La Grange, IL ~ 708-352–1762

WHAT:      Holiday Fun for ALL Ages!

• Social and fun activities for adults
• Gymnasium for introduction to goal ball
• Indoor play area for young children
• Fun jump to keep the kids entertained
• Optional grab bag gift swap (under $10)
• Bring a snack to share and join us for some holiday fun!

Pam Redding, World Sports Chicago’s Director of Paralymics and Disability Sports will discuss goal ball and other sports opportunities for the visually impaired of all ages.

Please RSVP by December 6th to Michelle at michelleoconnor@comcast.net

Include the ages of anyone interested in playing goal ball

HURRY! REGISTER BY MONDAY NOVEMBER 9TH

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 new South Texas NOAH Group and hear more about the national conference to be held in Washington, D.C. in July 2010. Thanks to a generous donation, we’re able to offer amazing, discounted dinner rates!

When:    Saturday, November 14, 2009
                 Socializing and Appetizers at 5:30pm
                 Dinner at 6:30pm
Where:   Italiano’s Restaurant
                 217 FM 1960 Bypass Rd E.
                 Humble, TX 77338
Cost:     Member rates: $15.00 adults ~ $5.00 kids 12 and younger
               Non-member rates: $27.50 adults ~ $12.50 kids 12 and younger
               Not a member yet? Join today or send your dues along with your dinner registration.
               Price includes appetizer, entrée, dessert, beverage, tax, and gratuity   

Delicious Family-Style Meal: Scrumptious appetizers include fried mozzarella, roasted ravioli, and fried mushrooms. Family-style dinner includes house salad, fresh made garlic knot rolls, chicken marsala, shrimp scampi, homemade lasagna, and penne pomodoro with fresh vegetables. Guests will also enjoy the delectable dessert table with four different cakes, plus choice of non-alcoholic beverage (coffee, tea, or soda). Download the registration form and register by Monday November 9th.

Deadline Extended to November 2nd!
Space is Limited- Register Soon!

Download Registration Form

Scranton Area Mini Conference November 6-7, 2009

Comfort Suites & Marvelous Muggs
44 Montage Mountain Rd.
Scranton, PA 18507
Phone: 570.347.1551
~ www.comfortsuites.com/hotel/pa031

NOAH has learned that a one-hour albinism documentary, “Albino Crisis”,  will air on The Learning Channel (TLC) program, My Shocking Story on Sunday, October 18th at 10:00pm ET and Monday, October 19th at 1:00am ET (Please check local listings to confirm broadcast schedules in your area).

NOAH Scientific Advisor and frequent conference presenter, Dr. Murray Brilliant, will be featured on this program. NOAH also expects footage to include interviews and conversation with NOAH members, both at home and at the awesome NOAH Family Summer Camp held last July in Mount Union, Pennsylvania! Tune in!

October 17, 2009 3-7pm at the Kramer's
4010 Streamlet Way
Monroe, NC 28110
ckramer@albinism.org

RSVP by Oct. 10th.

Bring your family, meat to grill and a side dish. We'll provide the drinks and paper products. Just a casual get together to meet other NOAH families in the area and get to know each other. I can send directions on request as some map programs don't recognize the address.

Hurry, Register by Monday October 12th!

Join us for NOAH's LA Mini Conference, Saturday October 17th, hosted by Childrens Hospital Los Angeles

This all day event (8:30am to 4:00pm) provides valuable educational sessions for adults, and safe, age-appropriate activities for children.

Topics on the agenda include:

• Genetics of Albinism
• National Institutes of Health Protocol on Albinism  
• Hermansky-Pudlak Syndrome                           
• Impact of Pigment on the Developing Visual System 
• Latest Advances in Optical and Electronic Low Vision Aids                  
• Albinism in the Movies & News
• Social Issues for Families and Children with Albinism  
• IEPs and School Issues  

Complete meeting information and registration materials available at http://www.albinism.org/noahevents09.html

Hope to see you there!

UPDATE: 20/20 Special: The Extreme Treatment of People Living with Albinism

Scheduled to air Friday, October 2nd at 10pm Eastern/9pm Central

ABC News has added web articles and video clips to its site promoting the planned hour-long albinism special, scheduled to air on 20/20 this Friday evening. Visit http://abcnews.go.com/2020 for the latest information.

In support of the 20/20 broadcast about albinism, NOAH invites members to contact their local ABC news station to offer to do an interview on the topics of living with albinism and/or living with a child with albinism to bring greater awareness to albinism in your community.

20/20: The Extreme Treatment of People Living with Albinism: 10/2/09

Available for purchase on the ABC News Store.

NEWSFLASH! Albinism TV Special Rescheduled

ABC News advised NOAH that an hour long special on albinism has been rescheduled to air on their prime time news magazine program, 20/20! According to producers, this program will air Friday October 2nd at 10:00pm Eastern/9:00pm Central. Be advised that there is some chance that the schedule will change and the program will be postponed again.

Among the footage expected to be included are interviews with NOAH members participating in regional events, as well coverage of attendees at the 2009 NOAH Family Summer Camp this past July.

WARNING: Please be advised that the special will directly address the murders of people with albinism in Tanzania.  The program is not suitable for children.  NOAH suggests that parents screen the program before deciding to allow their children to view the show.

An online version of the story will be available at www.abcnews.com.

Be sure to set your DVR or tune in to your local ABC station to watch as the national spotlight turns to albinism!