NOAH - The National Organization for Albinism and Hypopigmentation logo

Events

Cleveland Area Get Together

Friday July 17th at 6:00pm

Socializing, information and fun!

Cleveland Sight Center
1909 E 101st St
Cleveland, OH 44106
(216) 791-8118

  • Come meet others from the albinism community
  • Talk about starting a NOAH group in the area
  • Refreshments will be served

To RSVP or for more information call Venetta at (216)375-9351

Meeting space provided by the Cleveland Sight Center: www.clevelandsightcenter.org


NOAH is committed to bringing the fellowship of the albinism community closer to your area in 2009. More events in different regions of the country means more opportunities for you to be a part of the NOAH magic! Below are just a few of the events being planned for 2009, with even more to come!

2009 Bowl-A-Thon ~ Thanks to all who participated!
February 20-22, 2009

This year's bowl-a-thon was a great way for the albinism community to come together in person locally and in spirit across the United States and Canada while raising funds for NOAH programs. NOAH depends on dues and donations by its members to continue to operate basic programs, and needs the bowl-a-thon to fund special projects and new initiatives. All of the money that you collect will help keep NOAH moving forward.

It's not too late to donate! Visit http://events.org/noah and make a contribution to your state or favorite member's team.


New York Area mini-conference

LAST CHANCE! NOAH's one-of-a-kind experience is coming to New York! YOU WON'T WANT TO MISS IT!

DEADLINE EXTENDED TO TUESDAY, MARCH 10TH! Download the event flyer.

In conjunction with the 2009 HPS conference
Saturday, March 21, 2009 from 9:00am - 4:00pm
Long Island Marriott Hotel & Conference Center
Uniondale, Long Island


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A full day of panels, sessions, and networking for the albinism community, including:

  • The Genetics of Albinism
  • How We See
  • Ask an Adult with Albinism
  • Adult and Family Discussion Groups
  • Children's Field Trip to Ringling Brothers Circus

The educational sessions you've been waiting for...

  • Albinism Research with David Adams, Ph.D., M.D., assistant clinical investigator in the lab of William Gahl at the National Human Genome Research Institute at the National Institutes of Health.
  • Genetics of Albinism with Murray H. Brilliant, Ph.D., Lindholm Professor of Genetics in the Department of Pediatrics at the University of Arizona College of Medicine.
  • Hermansky-Pudlak Syndrome with Donna Appell, RN, President and Founder of the HPS Network, NOAH's Board of Scientific Advisors.

National presenters that you want to hear...

Top-notch education of a national conference presented in an intimate, mini-conference setting ~ an incredible opportunity at a bargain price!

Adult member registration only $35.00, including lunch.

NOAH is committed to making this opportunity available to as many members of the albinism community as possible. Don't let this chance pass you by! Contact NOAH today!

  • Transportation concerns? We can help to arrange rides from public transportation points in Manhattan. Call or email for details.
  • A little short on cash? If you're dying to come but can't quite pull together the funds to register, contact NOAH for ideas to make the event possible at (800) 473-2310 or info@albinism.org

Informative sessions and networking opportunities...

  • Ask an adult with albinism.
  • Parent and adult discussion groups.
  • Network with the albinism community.

'The Greatest Show on Earth' for children!
Let kids be kids enjoying a day at the circus.

Registration deadline extended to Tuesday, March 10th! Download the flyer for more information. You may also fax your registration to 800-648-2310. Email info@albinism.org for more details.


North Texas Chapter 'March Madness' Meeting

Sunday, March 22nd from 3:00 - 5:00pm.
Handley Meadowbrook Lions Club
6013 Craig Street
Fort Worth, TX 762112 (let us know if you need transportation assistance)


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  • Join us for socializing, information, and fun!
  • Help plan our July 18, 2009 mini-conference.
  • Hear about Cyd Frazier's visit to the Low Vision Clinic.

RSVP Cyd at gccfrazier@yahoo.com
Sign up to bring a March Madness snack to share (hot dogs, buns, chips, potato salad, beverages, condiments, etc.)


West Virginia Albinism Family Day

Registration is March 25, 2009. Download the event flyer.

Saturday, April 04, 2009 from 10:00am - 3:00pm
Bridgeport Holiday Inn, Bridgeport, WV

Sponsored by:
West Virgina Schools for the Deaf and Blind
West Virginia University
American Foundation for the Blind (AFB)


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Dinner with NOAH's Board of Directors - Saturday May 2, 2009

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 2010 National Conference in the DC Area!

When: Saturday, May 2, 2009 at 6 PM
Where: King Street Blues-Crystal City, 1648 Crystal Square Arcade, Arlington, VA 22202
Take the Metro! Crystal City stop, from the Blue & Yellow lines, only steps away from station.
Cost: Member rates: $21.50 adults, $7.50 kids 12 and younger (Price includes beverage, tax, and gratuity)
Awesome Adult Menu: Choose from Margarita Chicken, Ultra Famous BBQ Ribs, Country Fried Chicken, Country Fried Steak, Cats & Dogs- Southern Fried Catfish Fillets with Hushpuppies, BBQ Pork Chops, or Garden Vegetable Pasta. Entrees served with chef's special selection of accompaniments, and bottomless soda, lemonade, or iced tea.
Kickin' Kids Menu: Chicken tenders and fries, 2 mini hamburgers or cheeseburgers and fries, 2 mini pulled chicken or pork BBQ with fries, hot dog with fries, grilled cheese with fries, macaroni and cheese, or spaghetti and meatballs. Served with choice of milk or soda.
Register by Friday, April 24, 2009. Download the event flyer.


Chicago Mini-Conference – May 9th, 2009

Chicago Bar Association 321 S. Plymouth Ct. 5th Fl. Chicago, IL 60604 United States

Awesome Adult Program

09:30 — 10:00 AMRegistration
10:00 — 10:15 AMWelcome, Introductions and NOAH Now – Mike McGowan, NOAH President
10:15 — 10:45 AMNational Institutes of Health Protocol – Dr. David Adams, NIH; Kelsey Thompson, NOAH Board of Directors; Donna Appell, RN, NOAH Board of Directors
11:00 — 11:45 AMGenetics of Albinism – Dr. Murray Brilliant, University of Arizona
12:00 — 12:30 PMHermansky-Pudlak Syndrome (HPS) – Donna Appell, RN, HPS Network and NOAH BoD
12:30 — 01:30 PMLunch
01:30 — 03:00 PMDiscussion Groups – Adults with albinism, Parents of children with albinism
03:00 — 04:00 PMAfternoon Social Hour/Refreshments

Fun for Kids!

Children ages four and younger will enjoy age appropriate, safe activities on site. School aged children will spend the well-chaperoned day at Navy Pier where they will ride the Ferris wheel, play mini golf, have lunch at McDonald's and visit the Chicago Children's Museum. Just a short CTA bus ride from the conference location, what could be more fun than playing and having fun with friends old and new from the albinism community?

Program Check-in: 9:30 AM, Depart: 10:00 AM, Return: 3:00 PM

Getting There!

  • Public Transportation – Easy to get to on the CTA and Metra.
  • Parking – Parking Garage Rates will be around $30; Some metered and non-metered street parking may be available.
    • Nearby Garages – 412 S Dearborn St (Open 6:30 AM — 8:00 PM), 318 South Federal (Open 24 hours; Phone 312-986-5813)

Volunteer with the Kids!

Are you or someone you know Fun? Enthusiastic? Responsible? Love Kids? Yes! Then NOAH may be looking for you! NOAH is seeking a limited number of volunteers to help out with supervision during the mini-conference. If you or your child's vision teacher, aunt, uncle, grandparent, or best friend forever would like to be considered, email info@albinism.org or call 800-473-2310 for more details.

Register Today!

The Chicago mini-conference is the third in a series of regional events across North America in 2009. NOAH is committed to bringing the magical experience of an albinism community gathering to more locations this yea, reaching out to those who might not be able to attend a NOAH conference. It's a jam-packed day featuring top experts in the field, meaningful panels and discussion groups, and the opportunity for kids to be kids within the albinism community. Member registration fees are $25 for attendees ages 5 and up, 4 and under are free. Be a part of the NOAH magic!
Register by Monday, April 27, 2009. Download the conference flyer.


North Texas Albinism Community Putt-Putt Outing!

Join us Saturday, May 23, 2009 for some fun and games!

We are meeting at the Putt-Putt Fun Center in Fort Worth, TX. $10.00 gets us unlimited putt-putt, 40 tokens for games, and a hot dog with drink — all until 2 PM. Kids 5 and under are free with adult ticket purchase.

WHEN: May 23, 2009 at 10:30 AM
WHERE:Putt-Putt Fun Center
7001 Calmont, Fort Worth, TX 76116
(817) 737-2242
RSVP: Cyd Frazier

Please join us for socializing, information, and FUN!


Texas

North Texas Mini-Conference

Registration Deadline Extended to July 13th!!!

Saturday, July 18th, 8:30am - 4:00pm

Cook Children’s Hospital, Hochberger Auditorium
801 Seventh Ave., Fort Worth, TX 76104

Speakers and session topics include:

  • Eric A. Packwood, M.D., Pediatric Eye Specialists- Eye Surgeries
  • Mike McGowan, NOAH President- NOAH Now
  • Stephanie H. Fleming, O.D., Dallas Services- Low Vision
  • Nancy Lee, North Texas Chapter NOAH- Hermansky Pudlak Syndrome
  • David Adams, Ph.D., M.D., National Institutes of Health- NIH OCA Research
  • Mary K. Kukolich, M.D., Cook Children’s Hospital- The Genetics of Albinism
  • Margaret Mary Campbell, NOAH BOD- Teaching Reading to a Child with Albinism
  • Discussion Groups- Adults with albinism, Parents of children with albinism
  • Panel- Ask an Adult with Albinism

Fun for Kids!

Kids will enjoy a fun filled day including a bully
proofing session, and a cele-bear-ation with a special
guest appearance by Bearemy. Each child makes his/
her own new best friend.

Download Registration Form Here!

For more information, please email: noah.ntx@albinism.org


NOAH's Third Family Summer Camp

We're Camping at
Beacon Lodge, Mount Union, PA
July 23-27, 2009


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NOAH's third biannual Family Summer Camp has been scheduled for Thursday, July 23 - Monday, July 27, 2009. We're excited that this year's camp will be a day longer, but is still being offered at the 2007 of only $315 per attendee. In addition, we're thrilled to be able to offer multiple children discounts, allowing a second child to attend for $275, and 3+ children in family for just $250 per child.

Check out the 2009 Family Summer Camp information page to learn more about planned activities, funding resources, and to download a registration packet.



What’s Happening in Your Area? The enormous growth in local and regional NOAH activities recently is a tribute to the wonderful NOAH members who chose to step up and take the lead. With their initiative, NOAH helps spread the word and encourage people to get together and enjoy the fellowship of the albinism community. For more information about getting local activities organized in your area, contact NOAH at info@albinism.org or call 800.473.2310.

5th Annual NOAH Bowl-A-Thon!!!
February 19-21, 2010

Download Bowl-A-Thon Booklet

The bowl-a-thon is a fun way for the albinism community to come together in person locally and in spirit across the United States and Canada while raising funds for NOAH programs. Bowling for NOAH reaffirms that we are all part of the larger albinism community. It is just one of the fabulous ways in which NOAH helps create a sense of an extended family.

Register and join your state/province’s team at www.events.org/noah.

As of today the Bowl-A-Thon has brought in over $250,000. It has enabled NOAH to move forward in many different ways. We must keep building on this momentum. The heart of the Bowl-A-Thon is getting people in the albinism community together to have fun, educate, raise awareness and money.

Download Bowl-A-Thon Gear order form


NOAH's 13th National Conference in Washington, D.C.
July 15-18, 2010
Download Conference Brochure

Registration Fees:
Early bird member rates begin at $150 for members ages 5 and up; $75 for children ages 6 mo to 4 years

The Conference Hotel
Crystal Gateway Marriott
1700 Jefferson Davis Highway
Arlington, Virginia 22202

Across the river from Washington, D.C., and just minutes from Reagan National Airport, the Crystal Gateway Marriott offers exceptional accommodations, luxurious amenities and impeccable service. This Crystal City Marriott is surrounded by Arlington’s best shopping and dining with the Crystal City Metro stop accessible from the lobby of the hotel.

Room Rate
$149* per night Wed–Sat, July 14th–17th
(available to registered attendees only)
$159* per night before July 14th or after July 17th
* Plus tax

Reservations:
Call 1-800-266-9432 no later than June 22, 2010,or use the online reservation system:
https://resweb.passkey.com/go/noah2010.

Reservations require a one night deposit plus tax,refundable if cancelled 72 hours before arrival.

Funding Sources Packet

Personal Grant Application


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NOAH’s 2008 Bowl-a-thon

February 15-18, 2008

Whether you bowl or host your own bowl-a-thon or a “thing-a-thon*” event of your own, save the dates to have some fun and support important NOAH programs in 2008.

NOAH’s 2008 National Conference

“Imagine Your Luck”

July 10-13, 2008

The Riviera
2901 Las Vegas Blvd., South
Las Vegas, NV 89109Las Vegas, Nevada
http://www.rivierahotel.com/
Online Reservations
Reservations: 800.634.6753
Hotel Info.: 800.634.3420

NOAH Registration Packet is available.
Mail completed registration forms to NOAH, PO BOX 959, E. HAMPSTEAD, NH 03826-0959

NOAH’s Conference Committee has exciting plans for our attendees in 2008. With the incredible amount of meeting space available to us at the Riviera, our committee has the opportunity to provide innovative and specialized programming to meet the diverse needs and interests of our membership. NOAH’s entire leadership team is getting involved in planning this, our 12th national conference.

In addition to the traditional favorites, we’ll be taking a fresh look at keeping the event exciting for our return attendees with innovative, engaging content and activities. Ideas being considered include:

  • Expanded special interest/subgroup programming and activities
  • Enhanced networking activities
  • Re-vamped “kids conference” including:
    • smaller school grade groupings
    • lunch with your friends
    • 10am-2pm schedule
  • Family field trips
  • Mini-retreats for parents
  • Parent/child sessions

Conference Lodging

The Riviera has offered NOAH an exceptional room rate for the conference. Single/double occupancy rooms are $94 per night plus tax for Friday/Saturday nights, and an amazing $79 per night plus tax Sunday thru Thursday nights! Reservations can be made by calling 800.634.6753 no later than June 20, 2008.
Note: Reservations require a one night’s deposit plus tax, payable by credit card, check, or money order (refundable if cancelled 48 hours before arrival).

The Riviera
2901 Las Vegas Blvd. S.
Las Vegas, NV 89109
www.rivierahotel.com
Reservations: 800.634.6753
Hotel Info.: 800.634.3420

We anticipate that this may be our biggest conference yet, so make your own luck and start planning now...you won’t want to miss this one-of-a kind gathering of the albinism community.0

Vegas Is Affordable For Everyone!

This may be the most affordable conference in NOAH history so even more people can experience the magic of a conference. Airfares to Las Vegas tend to be some of the lowest in the country. And, the Riviera room rate is just $79 per night Sunday – Thursday and $94 per night Friday - Saturday.

We Have Enough Room To Be Comfortable!

With over 600 people attending both of the last two conferences, NOAH needs space! Because Las Vegas is the nation’s leading conference destination they have enough space to accommodate our growing membership.

Spend Time With Your Family!

Did you know that Las Vegas is a great family destination? We’ve added some free time to the conference schedule so you can take your family to visit the IMAX Theater, or Shark Reef (an amazing aquarium). Take a Lake Mead boat tour or visit the historic Hoover Dam. There’s even an indoor theme park – a great way to have fun out of the sun!

Make It A Vacation!

You can extend your conference experience into a vacation. You’re close to southern California so you can hop over to see the lights of Hollywood and the rest of Los Angeles or sea breezes in San Diego. Las Vegas is also an easy drive to the Grand Canyon!

New City – New Schedule!

To keep the conferences fun and exciting, we’re giving the schedule a makeover!

New in 2008:

  • Specialized welcome sessions for a smoother transition into the conference.
  • Meet the conference mascot, Lucky T. Duck! He’ll quack you up!
  • More programming and activities for special interest groups within NOAH such as young adults and people of color.
  • Enhanced networking – get to know the people who can help you!
  • More discussion groups so that you can get answers and share your experiences.
    • Optional social events for all ages!
    • Kid-friendly schedule
    • Smaller school-age groups
    • Lunch with your friends
    • 10:30 a.m. – 2:30 p.m. schedule
  • Unforgettable Saturday night festivities that you won’t want to miss!

Registration

Early bird registration fees are $150 for members ages 5 and up, and only $75 for children ages 6 months to 4 years.

Lodging Reservations

$94* per night Friday/Saturday $79* per night Sunday-Thursday Call the Riviera at 800.634.6753 no later than June 20, 2008. *Single/double occupancy plus tax. Reservations require one night’s deposit plus tax, (refundable if cancelled 48 hours before arrival).

Registration Package

To Register for the NOAH Conference please print the Registration Package and return the registration form. 

Funding Sources Information Packet

If you think that going to a NOAH conference is beyond your means, we may be able to help you find organizations that can help pay for your expenses. NOAH has prepared a Funding Sources 2008  information packet to help potential attendees find ways to obtain assistance with conference expenses outside of the NOAH personal grant process.

Personal Grant Applications

If you've tried contacting organizations such as those listed in the Funding Source Information Packet but still need financial help getting to the conference, you may submit a personal grant application. Through the generous donations of NOAH members and the money from fund-raising events such as the bowl-a-thon, a limited amount of money will be available to assist members in attending the NOAH conference.

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NOAH
The National Organization for Albinism and Hypopigmentation
PO Box 959, East Hampstead, NH 03826-0959
Phone: 800 473-2310 (US and Canada) Phone: 603 887-2310 Fax: 800-648-2310
http://www.albinism.org

If you have any questions or comments, please e-mail us at webmaster@albinism.org

NOAH is a volunteer organization for persons and families involved with the condition of albinism. It does not diagnose, treat, or provide genetic counseling. It is involved in self-help, while trying to promote research and education.

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