NOAH`s 16th National Conference July 14 – 17, 2016 Wyndham

Photo courtesy of Carmine Sarazen/VisitPittsburgh
Photos courtesy of Positive Exposure, Rick Guidotti
NOAH’s 16th National Conference
July 14 – 17, 2016
Wyndham Grand Pittsburgh Downtown
600 Commonwealth Place, Pittsburgh, PA 15222
albinism.org/NOAHCon2016
#NOAHCon2016
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Details
Dates and
Deadlines
The Conference Hotel
Wyndham Grand Pittsburgh Downtown
600 Commonwealth Place • Pittsburgh, PA 15222
Located in Pittsburgh’s Central Business District, also known as the
Golden Triangle, where the Allegheny and Monongahela Rivers
meet to form the Ohio River, and conveniently near Heinz Field,
PNC Park, Consol Energy Center and Rivers Casino.
Group Room Rate
Wednesday, July 11 – Sunday, July 17
$140 per night (plus tax and fees)
single / double / triple / quad
Group rate applies if rooms are available:
July 8 – 10 and July 18 – 20
NOAH encourages you to book your room as soon
as possible to ensure availability. Please note that
one night’s deposit is required. You may cancel
up to 72 hours before without penalty. Reservation
must be made by June 22nd to ensure group rate.
Hotel Reservations
Reserve NOAH rates online at:
https://aws.passkey.com/g/34681122
or call 877-999-3223 and say you are booking with NOAH.
Conference Registration is ONLINE!
Save time and a stamp!
Register online for the NOAH 2016 Conference.
If you can’t register online, contact NOAH for other options.
Email: info@albinism.org • Phone: 1-800-473-2310
albinism.org/NOAHCon2016
#NOAHCon2016
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Conference Fees
Early Bird Registration
Deadline is April 15th.
Received
by 4/15/16 by 5/13/16
Members
Children 5 yrs – Adults
$175 $230
Young Children (6 mos. – 4 yrs)
$100
$125
Non-Members
Children 5 yrs – Adults
$210
$285
Young Children (6 mos. – 4 yrs)
$135 $185
Professionals
$300 $375
Registration includes:
•Thursday night reception
•Friday & Saturday lunches
•Saturday night reception
•Sunday farewell breakfast
Registrations after 5/13/16
on space-available basis
only. Programs for attendees
17 and under have limited
enrollment and are not
available for walk-in
registration.
CANCELLATION POLICY
Written refund requests are
subject to a $25 fee and the
following receipt deadlines:
By 5/13/16 – all fees
By 5/31/16 – 50%
After 5/31/16 – no refunds
Photo courtesy of VisitPittsburgh
Photo courtesy of VisitPittsburgh
Photo courtesy of Ft. Pitt Museum/VisitPittsburgh
Building Bridges. We all build bridges throughout life – bridges that connect us
to ones we care for, bridges to knowledge, to understanding, to acceptance. Join
us as we build bridges in Pittsburgh – take advantage of this unique opportunity
to establish lifelong friendships, collect information, and create indelible
memories as you connect with the albinism community.
Often described as a fun, festive family reunion, the national NOAH Conference
presents the most comprehensive albinism education program anywhere and
affords plenty of time to socialize and enjoy fellowship. Authorities in a variety
of fields present accurate information on living with albinism, raising a child
with albinism and the latest albinism research.
Photo courtesy of JP Diroll/VisitPittsburgh
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four brand new features for
the 2016 conference!
NOAH Conference Website
albinism.org/NOAHCon2016
restrictive parameters of the industry’s standard of
beauty. After a chance encounter with a young woman
with albinism, Rick refocused his lens on those too
often relegated to the shadows to change the way we
see and experience beauty.
A brand new webpage is loaded with everything
you need to know about attending the conference.
The website contains the latest and most detailed
information about the conference program, optional
activities, youth programs and up to date conference
news. An extensive list of area amenities will make
it easy for you to find everything from food to
pharmacies. Maps and transportation information
have all you need to know to get to the conference
and how to get around while you are there.
Thank You for the Music
One-Woman (With Albinism)
Cabaret Show
Featuring Marleena Barber
Friday July 15, 2016 9:00 PM
Marleena Barber is a
performer, educator and
disability advocate. She has
performed in various musical
theater productions and as
a solo artist at festivals and
concert venues throughout California. Her one-woman
cabaret show, Thank You for the Music, tells the story
about her life growing up with albinism and how
music played a vital role in the journey to believing in
herself. The show is an inspiring piece that reaches
out to all ages, and encourages audiences, through
a variety of different musical styles, to live their
dreams despite any challenges they may face. The
show was featured at the 2010 International VSA
festival – a festival on arts and disability – produced
by the Kennedy Center in Washington D.C. She has
served as a keynote and motivational ambassador
at various conferences across the country, including
a performance on Capitol Hill for Congress as part
of National Arts Advocacy Day. Marleena is married
with two young daughters and resides in Anaheim,
California. She directs Braille Institute’s awardwinning Johnny Mercer Children’s choir – a choir
composed entirely of blind and visually impaired
students. As a visually impaired individual, Marleena
strives to be a role model of independence and
determination, demonstrating to her students, and
her audiences, that with hard work dreams can come
true. For more information about Marleena please
visit: www.marleenabarber.com.
Low Vision Driving Workshop
Pre Conference - Thursday July 14, 2016
8:30 AM – 4:30 PM
This new workshop is for people with low vision
considering obtaining a driver’s license. Low vision
driving guru, Chuck Huss, and a group of experts
will discuss a comprehensive series of topics to help
attendees understand the process. More information
on this workshop can be found on page 8 and at
www.albinism.org/LVDriving.
Screening of Documentary Film On Beauty
Featuring Rick Guidotti
Friday July 15, 2016 1:00 PM
From Emmy-nominated filmmaker Joanna Rudnick
and Chicago’s Kartemquin Films comes a story about
challenging norms and redefining beauty. On Beauty
follows fashion photographer Rick Guidotti, who left
the fashion world when he grew frustrated with the
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Photo courtesy of Lawrence Lau
New
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1
0
in 2 NOAH is excited to announce
Conference Highlights
Learn! Play! Connect!
Facts
Through keynote presentations
and information sessions, you
can increase your knowledge
of albinism.
Keynote Presentation
Research Updates
A panel of nationally
recognized researchers share
the latest scientific and medical
information on identifying and
understanding albinism. Learn
about clinical trials and other
albinism studies.
Educational Programs
Two full days are packed with
a wide variety of information
sessions and discussion groups.
Here are just a few Educational
Topics you will be able to explore:
•Genetics of Albinism
•What do People with
Albinism See?
•Parenting a Child
with Albinism
•Advocating for your Student
•Parenting without Pigment
•Resources for Adults
with Albinism
•Workplace Topics
•Low Vision Driving Workshop
and Educational Sessions
•Orientation & Mobility
•Assistive Technology
•Adaptive Recreational
Opportunities
•Self Defense for
Visually Impaired
•Much, much more
Fun
Exciting and enjoyable
opportunities await kids
of ALL ages.
Adult Pre Conference Outing
Adults with albinism gather
for a pre conference excursion.
See page 9 for more about this
optional activity.
Optional Activities
Choose from a number of tours
to experience Pittsburgh. Get the
scoop on pages 9 and 10.
Children’s Programs
From childcare for the little
ones to engaging activities
for older kids – caring,
professional, trained staff and
vetted volunteers provide a safe
environment for kids to have fun!
Preschool – Professional staff
provide high-quality daycare
for children aged six months to
entering kindergarten. See page
11 for more information.
School-Aged Kids – NOAH
kids enjoy the unique experience
of being with others who share
their condition. Children will be
placed in one of several programs
based on the grade they will be
entering in the fall from 1st –
12th grades. Each program is
designed to meet the interests
and needs of that age group. See
pages 12 and 13 for details.
NOAH Apparel
We are pleased to
offer several great
merchandise options
this year at albinism.org/
NOAHCon2016.
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Why Attend a
NOAH Conference?
Here’s what past conference
attendees said about their
experience:
“Living with albinism, you
can feel like you’re alone
99% of the time. At the
NOAH conference people
totally get you, understand
what you’re going through,
and you discover you
are not alone/strange/
different.”
“It feels like coming
home. You don’t need to
explain yourself. You’re
accepted and embraced
by strangers who feel like
family.”
“Attending a NOAH conference
is an amazing opportunity to
bond with individuals who
somehow seem to instantly
understand what you’ve been
through and what lies ahead.
I’ve never felt more a part of
any community than I have
when I’m around others with
albinism.”
“It’s an experience of
understanding and
connection, and the bond
you feel in your soul with
the people you meet and
lifetime friends you make
is like no other.”
“To see and u
nde
the beauty of th rstand
is
community.”
#NOAHCon2016
“Education…
connections… family…
we found it all at the NOAH
conferences. Worth every
penny!”
“The NOAH conference
provides kids with
albinism self-confidence,
connections, and friendships
that continue through a
lifetime.”
“Seeing so many adul
ts
with albinism – who w
er
brilliant, beautiful, stro e
ng,
capable, and confident
living their dreams de
spite
having low vision.”
Fellowship
Optional outings, parties
and social activities are
perfect opportunities to build
friendships, make connections
and have fun.
Mothers’ Workshop
A one day, pre conference
workshop allows mothers to
put the outside world on hold
in order to focus on all the
emotions that come along with
having a child with albinism. See
page 9 for details.
Low Vision Driving
Workshop
A one day workshop for low
vision individuals who are
interested in exploring the
“Parents can observe
other children with
albinism of all ages.”
d
dge gaine
le
w
o
n
k
e
“Th
nts talking
from pare parents and
with other lking with
children ta ren.”
other child
“Parents will leave with
comfortable feelings like
‘we can handle this.’
Children learn that ‘I’m
not alone.’”
“You just can’t miss the
NOAH conference. You
make a lot of new friends
and get to see your old
friends. You learn how to
live with albinism.”
Photos courtesy of Positive Exposure, Rick Guidotti
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driving privilege. This day long
multi-disciplinary workshop
will cover the process to assess
readiness and eligibility for low
vision drivers, evaluating and
obtaining bioptics, training and
related topics. Parents, spouses or
others who might offer emotional
support to potential low vision
drivers are also encouraged to
attend. See page 8 for details.
Conference registration
includes:
•Thursday evening opening
reception
•Lunch Friday and Saturday
•Saturday evening dessert
reception and dance party
•Sunday morning breakfast
and closing session
Tentative Conference Schedule
Thursday, July 14, 2016
Pre conference Activities
These pre conference activities
require an additional fee and
start early! If you register for
these activities, be sure to
make note of the start time
when planning travel.
8:30 AM – 4:30 PM
Low Vision Driving Workshop
See page 8 for details
9:00 AM – 3:00 PM
Mothers’ Workshop
see page 9 for details
1:00 PM – 3:00 PM
Adults with Albinism Outing
see page 9 for details
3:00 PM – 8:00 PM
Conference Check-in
After settling into your room,
pick up your conference folder,
name badge and pre-ordered
merchandise.
Welcome
3:00 PM – 5:00 PM
Subgroup Meetings –
Small groups with shared
interests gather.
7:30 PM – 8:30 PM
Opening Session – The NOAH
conference kicks off with an
exciting program that you won’t
want to miss! Highlights include:
5:00 PM – 5:30 PM
First Timers’ Session –
Get some background information
on NOAH and pick up some helpful
tips to get the most from your
conference experience.
•the amazing Rick Guidotti speaks
about how seeing a girl with
albinism changed the focus of his
career
•traditional NOAH funny business
•leadership scholarship award
•and a surprise or two
And that’s all in the first hour!!!
6:00 PM – 7:15 PM
Kids’ Conference Orientation
Session – Mandatory session.
Staff will explain procedures for
drop-off, pick-up and emergency
protocols, and give more
information about the upcoming
activities.
8:30 PM – 9:30 PM
Reception – Light refreshments
and snacks provide the perfect
atmosphere to start making
connections in the albinism
community or to catch up
with friends.
albinism.org/
NOAHCon2016
#NOAHCon2016
Friday, July 15, 2016
8:00 AM – 8:45 AM
Subgroup Meetings –
Small groups with shared
interests gather.
9:00 AM – 3:15 PM
(Check in begins at 8:45 AM)
Preschool Program and
NOAH Kids’ Programs:
A preschool program and three
separate programs for schoolaged children give kids with
albinism and their siblings the
unique opportunity to interact with
others like themselves in a safe
environment designed to keep
them engaged in fun activities
while making friends. Lunch is
provided for the kids separately
from their parents / guardians.
9:00 AM – 3:10 PM
Educational Programs
The educational programming
provides the opportunity to learn
the most up to date information
about living with albinism. The
topics presented by experts in
their fields will provide educational
and community based sessions
for people with albinism, family
members, educators and
professionals. Workshops, panel
discussions and discussion groups
will give each of us the opportunity
to connect with the community
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and learn from one another.
3:30 PM – 4:30 PM
Extra Sessions – Special
presentations address specific
topics of interest to the albinism
community.
3:30 PM – 4:30 PM
Subgroup Meetings –
Small groups with shared
interests gather.
5:00 PM
Optional Trips and Tours
An additional charge applies.
See pages 9 and 10 for details.
Tentative Conference Schedule
Saturday, July 16, 2016
8:00 AM – 8:45 AM
Subgroup Meetings –
Small groups with shared
interests gather.
9:00 AM – 3:15 PM
Preschool Program and
NOAH Kids’ Programs
Educational Program - Same as
Friday, see Friday schedule.
Sunday, July 17, 2016
7:30 PM – 10:30 PM
Saturday night celebration
It’s the albinism community’s
biggest party! Come relax and
celebrate with friends new and
old. We’ll have a D.J. and sweets
and treats. A cash bar will also be
available. This is a wonderful way
to begin to wrap up your NOAH
conference experience.
3:30 PM – 4:30 PM
Extra Sessions – Special
presentations address specific topics
of interest to the community.
9:00 AM – 10:30 AM
Breakfast and Closing – Sunday
breakfast provides the setting
for the conference wrap up.
The closing session includes
an awards presentation, a
retrospective slideshow and
announcements for the date and
location of future NOAH events.
There is also plenty of time to take
pictures with your buddies and to
say good-bye.
Preconference Activities for Thursday, July 14, 2016
Can’t wait to get started? If you opt for one of the
full day activities, you should probably arrive in
Pittsburgh on Wednesday, July 13th.
ἀes e activities require a separate fee.
Driving with Low Vision and Bioptics:
A Multi-Disciplinary Perspective
Thursday July 14, 8:30 AM – 4:30 PM
$90 per person (includes lunch)
Register online only by June 16, 2016, at this special
site: www.albinism.org/LVDriving
We are not able to accommodate on-site registrations
Photo courtesy of Ali Adema
Obtaining a driver’s license that requires the use of
a bioptic lens system involves the cooperation and
services of a multi-disciplinary team of professionals.
This workshop will provide an overview of:
Topics & Presenters:
•The Clinical Low Vision Examination
Paul Freeman, O.D. FAAO
•Fitting, Evaluation & Prescription of Bioptics
Cheryl Reed, O. D.
•Pre-Driver Readiness Skills
Chuck Huss, C.O.M.S., DRS
•Behind-The-Wheel Training
Kathleen Miller, OTR/L, CDRS
•Bioptic Driving Research
Cynthia Owsley, Ph. D., MSPH
•Consumer Advocacy, Matt Bailey
•Panel Discussion / Questions & Answers
•the preliminary clinical low vision exam;
•process of evaluating, fitting, and prescribing a bioptic;
•pre-driver readiness; behind-the-wheel training or retraining; current bioptic driving related research;
•advocacy tips for legislative change;
•ample time for addressing those questions or concerns
that arise concerning low vision driving issues.
This workshop is intended for low vision individuals
who are considering exploring the driving privilege.
Parents or spouses who might offer direct or indirect
related services or emotional support are also
encouraged to attend.
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Preconference Activities for Thursday, July 14, 2016
Photo courtesy of VisitPittsburgh
Photographer: Laura Petrilla
NOAH Mothers’ Workshop
9:00 AM – 3:00 PM
$50 per person
(includes lunch and
refreshments)
Adults with Albinism Outing
1:00 PM $44 per person
For adults with albinism
18+ and their significant
others or family members.
SPACE IS VERY LIMITED.
Slots will be given to those
who register first, so register early!
Do you like to laugh? Enjoy food? Do you want to
catch up with old friends or make new ones? Adults
with albinism and their significant others are invited
to join us for a pre conference walking tour of
Pittsburgh’s historic Strip District.
Please note: childcare is NOT available, so please
make other arrangements.
The Strip District Market Tour features a behind-thecounter look at a variety of eateries in Pittsburgh’s
historic market district. This tour links local history
of the eating establishments peppered along Penn
Avenue with taste samples from around the world
including Italian pastries, Mediterranean and Polish
specialties, European meats and French bread.
As a mother of a child with albinism, Sheila Adamo
LCSW, CADC, designed this one day workshop for
mothers to put the outside world on hold and deal
with all the emotions that come along with having a
child with albinism. Led by a licensed professional,
this is a rare opportunity to discuss issues of
acceptance, anger and fear along with ways to keep
our sanity while dealing with families, friends, schools
and everything else that comes our way. We explore
how albinism has changed us; and how we can
continue to grow and help our children to grow and
become happy, healthy adults.
The tour includes frequent tastings (enough food for
a moderate lunch) and a bottle of water, along with
historic and architectural information provided by a
knowledgeable local tour guide.
Wear weather appropriate clothing and comfortable
walking shoes. Please be advised there are some
stairs on this tour.
Additional Activities for Friday, July 15, 2016
NOAH conferences are packed with informational session and social opportunities. Friday evening is the
mid-point of the conference, so you may want to relax, or, you may want to keep up the momentum! Here
are some optional activities to see different parts of Pittsburgh while continuing your connection with the
albinism community. All optional outings require a separate fee.
Power to the Pedal!
$22 for kids 12–16 and $27 ages 17 and up
4:00 PM – 6:00 PM tour is family friendly ages 12 and
up* 7:00 PM – 9:00 PM tour is for adults 21 and over
The 7:00 PM
tour is for adults
21 and over and
will feature stops
at local pubs and
brew houses.
You can sample
some of the best
food and drink
Pittsburgh has
to offer.
Looking for something a little different? Want to burn
off some energy after sitting all day? How about
a touring Pittsburgh on a bike built for 15! Pedal
Powered Party Bikes provides the bike and a drive /
tour guide. You provide the power.
*The 4:00 PM tour is for anyone 12 and older (children
under 18 must be accompanied by a parent / guardian
and are required by law to wear a helmet). Take in
the sights of Pittsburgh’s downtown and North Shore
area.
Photo courtesy of VisitPittsburgh
Photographer: Adam Isovitsch
Please note food and beverages purchased at the
various stops are NOT included in the tour cost. This
tour is first come first served and seating is very
limited, so register early!!
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Additional Activities for Friday, July 15, 2016
Photo courtesy of JP Diroll/VisitPittsburgh
Photo courtesy of Carnegie Science Center/
VisitPittsburgh
Highmark Sportsworks® at the
Carnegie Science Center
$32 adult, $24 children 6:00 PM – 9:00 PM
All Aboard Molly’s Trolley!
$32 per person 5:30 PM – 8:00 PM
This two hour tour highlights Pittsburgh’s magnificent
array of architecture, rivers and historic landmarks.
The tour also showcases interesting facts about the
people, places and culture of the city. You’ll get an
up close and personal look at Pittsburgh Downtown,
Cultural District, North Side, Oakland, and one-way
ride on the historic Duquesne Incline!
Hey! Let’s scale a 25-foot rock wall! Want to be a
human yo-yo? Are you a fast runner? Could you beat
Olympic silver medalist Lauryn Williams? Wanna find
out? Where can you have all this fun AND hang with
the albinism community? Highmark SportsWorks® at
the Carnegie Science Center!
Mollly’s Trolleys features immaculate, new model
vehicles air-conditioning, gorgeous interior woodwork,
polished brass handrails and comfortable, padded,
bench-style seating, all reminiscent of 1920s-style
trolleys. See everything Pittsburgh has to offer!
Just take a free ride across the river on the light
rail to the Carnegie Science Center. We’ll have all of
SportsWorks® to ourselves. Kids and kids at heart can
explore passions for sports and science or just get
active.
On Beauty Film Showing
Free 1:00 PM
The idea behind Carnegie Science Center’s Highmark
SportsWorks® is to inspire learning and curiosity
by uniting the experience of sports for every age
level with the laws of science that control sports.
They offer nearly 30 interactive experiences in
three thematic areas: LifeWorks, Physics of Sports,
and Sports Challenge. For more information visit
carnegiesciencecenter.org/exhibits/highmarksportsworks.
On Beauty is a story about recognizing and
appreciating the beauty of difference. The film follows
fashion photographer Rick Guidotti. At the center of
On Beauty are two of Rick’s photo subjects – Sarah
and Jayne. Sarah lives in upstate New York and left
public school for homeschooling after being bullied so
harshly for the Sturge-Weber birthmark on her face
and brain. Jayne lives in Eastern Africa where witch
doctors hunt people with albinism to sell their body
parts and the society is blind to their unique health
and safety needs. Rick, Sarah, Jayne and the other
vibrant people highlighted in On Beauty prove that
people with genetic conditions are more than what is
in medical textbooks and beauty is more than what is
in magazines.
Fees include admission to SportsWorks® diner. Adult
meal includes a gourmet sandwich, pasta salad, fruit
salad, dessert and bottled water. Kids meals include
kid friendly sandwiches, fruit, dessert and a beverage.
Note: Some of the kids groups will be visiting the
Carnegie Science Center, but they will NOT be visiting
SportsWorks® on their trip.
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Preschool Program
The Copper Group
From six months to those entering kindergarten
The Copper Group is childcare for our youngest conference attendees,
six months to five years. Parents can attend workshops and activities
knowing that their young children are being cared for by qualified and
caring nannies. These nannies will provide a balance of quiet and active
time in a safe, nurturing atmosphere.
The following is a list of planned activities Beth and Kelly anticipate for
the Copper Group.
Activities include:
Other activities:
• Hands on science programs
presented by the Carnegie
science Center
• Rock and Roll Pet Store
• Visit from the Pittsburgh Zoo
• Gymagic Bus
• Puppet show
• Music with Robyn
• Gross motor area
• Quiet time
• Free play
• Arts and crafts
• Snacks and lunch will be served
in the program area
Photos courtesy of Positive Exposure, Rick Guidotti
Parents can relax and
focus on the educational
sessions and networking
opportunities assured that
their young children are in
good hands.
NOAH is concerned about the
safety and security of your
child. Therefore the Copper
Group includes the following
procedures:
• Matching security bracelets
for parent and child
Photos courtesy of Positive Exposure, Rick Guidotti
• CPR and First Aid certified
team managers
• Licensed nurse on premise
• Vetting of all volunteers
and staff
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IMPORTANT
NOAH will try to
accommodate every
child that registers for
the conference in this
program. However, due to
constraints such as securing
meeting space, reserving
transportation, and other
logistical considerations,
NOAH may need to cap the
number of children in the
program to ensure proper
staffing. It takes several
weeks to plan activities, so
last minute registrations
pose significant problems.
To ensure your child’s
spot in a program, please
register early. Admission will
be based on the date the
registration and payment is
received.
Kids’ Conference
Conference Program
for Your Kids
The Kids’ Conference is a one-of-a-kind experience for school-aged
children with albinism and their siblings. While the adults are engaged
in the educational program, NOAH’s kids enjoy the unique experience
of being with others who share their condition. NOAH hopes that
the children with albinism and their siblings will begin to feel the
fellowship of the albinism community by creating an environment
that allows kids to play and make lasting friendships while learning
about albinism.
Children will be placed in one of four separate programs based
on the grade they will be entering in the fall (see page 13). Each
program is designed to meet the interests and needs of that
age group.
Photos courtesy of Positive Exposure, Rick Guidotti
Conference
Registration is
ONLINE!
Save time and a stamp!
Register online for the
NOAH 2016 Conference.
If you can’t register
online, contact NOAH
for other options.
Email: info@albinism.org
Phone: 1-800-473-2310
albinism.org/
NOAHCon2016
#NOAHCon2016
12
School Aged Programs
The Cobalt Group
The Iron Group
Entering 1st – 6th Grade:
Entering Grades 7 – 9
and
The Cobalt Group is made up of three tracks
consisting of two grades each. Crews of up to 12 kids
will be guided through a series of age-appropriate,
fun and educational activities including art, science,
physical activities, play time and albinism education.
The Steel Group
Entering Grades 10 – 12
The Iron and Steel groups will have many
opportunities for bonding with their peers in
Pittsburgh. They will also have plenty of time to share
the experiences they’ve had living with albinism
during get to know you games and lunches off site. In
addition to these exciting activities, both groups will
participate in informational sessions.
The schedule includes:
• Making your own stuffed animal (younger grades)
• Science exploration with the
Carnegie Science Center
• Animal visits from the Pittsburgh Zoo
• Gymnastics Bus
• Crafts & storytelling from The Pittsburgh Children’s
Museum
• Lego creations & team building with Snapology
• Eye education & edible craft
• Light Rail train ride to lunch at the mall (5th and
6th grades)
• Sun protection & skin care
• Crafts, board games & music
• The Carnegie Science center is located on the
shores of the three rivers and features four floors
of interactive exhibits such as Blue!, SpacePlace
and Roboworld that bring science to life for all
ages.
• Duck tours take you through the city and just when
you thought you had seen it all, the tour takes to
the water.
• This year the Iron and Steel groups will get an
introduction into Blind Sport. This introduction will
have even the most timid NOAH members playing
like the pros.
Photos courtesy of Positive Exposure, Rick Guidotti
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Photos courtesy of Positive Exposure, Rick Guidotti
Volunteer Opportunities
It takes dozens of people with many different talents
and countless hours of work to hold a national
conference for over 800 people. NOAH relies on
volunteers to make it all happen. Please take a
look at these volunteer opportunities and consider
helping to create NOAH Magic!
Crew Leaders
Cobalt Group: Grades 1st – 6th
8:30 AM – 3:30 PM Friday and Saturday
Crew leaders chaperone up to 12 kids through a
series of activities. An assistant will be assigned to
crews made up of younger children. Using materials
provided, leaders will facilitate short activities with
their crews at the beginning and end of the each day.
If you have a little time to give, here are
some great options.
• Session moderator
• Registration preparation
• Registration
• Silent auction and raffle
Assistant Crew Leaders
Here is what you can do if you have more
time to give. Are you:
Chaperones
• A committed extended family member, doting aunt,
cool cousin, proud grandma?
• An experienced daycare professional?
• An experienced teacher?
• An experienced early intervention specialist?
• An adult with albinism who loves to work
with kids or teens?
• A parent who always volunteers to go
on field trips?
• A college student studying education?
A program of adventure and exploration of Pittsburgh,
providing entertaining, engaging activities for teens
and pre-teens, complete with a teen “hang out.”
Volunteers are needed to chaperone field trips and
to monitor the teen room. Planned activities will take
place during the day Friday and Saturday. Teen room
supervision is needed in the evening.
If so, please consider volunteering for one of the kids’
programs. All volunteers working with children will be
vetted and required to attend an orientation session
on Thursday around 5 PM.
For more information,
contact NOAH at 1-800-473-2310
Go to albinism.org/conf-volunteer
to sign up today.
Responsible teens and college students help manage
groups of up to 12 younger children though engaging
activities. Assistant crew leaders will be paired with
seasoned volunteer crew leaders.
Iron and Steel Groups: Grades 7 – 12
Tour Group Leaders
On Friday evening, volunteers will direct those on
optional trips and tours to transportation and make
sure everyone gets where they need to be.
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Help the albinism community Build Bridges!
Registration fees do not cover the cost of the NOAH Conference.
NOAH depends on support from generous donors to create an
environment that transforms lives each time we bring the albinism
community together. We need your support to make the NOAH
Magic happen in Pittsburgh!
Your financial gifts support programs for infants, toddlers, schoolaged children, tweens, teens and adults with albinism as well as
programming for parents dealing with a new diagnosis, the challenges
encountered during the educational process, and for all aspects of
living with albinism.
NOAH also needs funding for personal grants. Personal grants are
available to families and individuals who need a little extra support to
be able to attend the conference and experience the NOAH Magic.
There are many ways to support the 2016 Conference!
•A financial gift to support the conference
•A financial gift in honor of someone from the
NOAH community
•Make a gift toward a personal grant
•Direct NOAH to someone who would like to
sponsor the conference
We have a full sponsorship package available for
corporations and organizations.
For more information, contact NOAH
at 1-800-473-2310 or
conference@albinism.org.
15
Photo courtesy of Positive Exposure, Rick Guidotti
Donate to the
Conference
Easy as 1•2•3
Make your tax
deductible
contribution today!
1
2
3
Online at
albinism.org/donate
By Amex, Disc, MC, Visa
at 1-800-473-2310
By checks made payable
to NOAH and mailed to:
NOAH Conference Fund
P.O. Box 959
E. Hampstead, NH
03826-0959
National Organization for
Albinism and Hypopigmentation
PO Box 959, East Hampstead, NH 03826-0959 USA
6
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Pittsburgh:
Here We Come!
Photo courtesy of VisitPittsburgh
PRSRT STD
US POSTAGE
PAID
MANCHESTER, NH
PERMIT NO. 417