Virtual NOAHCon 2020 July 9-12, 2020 A Vision Beyond 2020

Saturday, July 11th


Tentative Schedule

8:30am – 9:30am PT (11:30am – 12:30pm ET)
Everyone – Genetics of Albinism for Beginners with Murray Brilliant

9:30am – 10:00am PT (12:30pm – 1:00pm ET)
Break

10:00am – 11:00am PT (1:00pm -2:00pm ET)
Everyone/Teens – Ask an Adult with Albinism
Adults – Resilience & Self-care with Kelsey Thompson

11:00am – 11:30am PT (2:00pm – 2:30pm ET)
Break

11:30am – 12:30am PT (2:30pm – 3:30pm ET)
Kids – Story Time with the Author! (grades 1-6)
Family – IEP Workshop

12:30am – 12:45pm PT (3:30pm – 3:45pm ET)
Break

12:45pm – 1:45pm PT (3:45pm – 4:45pm ET)
Everyone – How We See for All with Matt Bailey
Teens – Virtual Escape RoomSESSION FULL!

1:45pm – 2:30pm PT (4:45pm – 5:30pm ET)
Break

2:30pm – 3:30pm PT (5:30pm – 6:30pm ET)
Family – Ask a Teen with Albinism
Adults – PWA Virtual Escape RoomSESSION FULL!

5:00pm – 5:45pm PT (8:00pm – 8:45pm ET)
Everyone – NOAH Dance Party

6:00pm – 7:00pm PT (9:00pm – 10:00pm ET)
Adults – PWA Virtual Escape RoomSESSION FULL!


Session Descriptions

Genetics for Beginners

Genetics of Albinism for Beginners
Murray Brilliant, PhD
This session is for those who want to gain a basic understanding of the genetics of albinism. The various types of albinism will be described. The session will answer the question: “Why do I (or does my loved one) have albinism?” by explaining and demonstrating how traits are inherited. You don’t need a science background and this will be a fun session with audience participation.

Ask An Adult with Albinism

Ask an Adult with Albinism
A panel of adults with albinism who are willing to tell it like it is will take questions from everyone. This promises to be a lively, informative and wide-ranging discussion of interesting topics.

PWA Resilience & Self-Care

Resilience & Self-care
Kelsey Thompson, M.S., CRC, CCM, LCPC
Living with albinism isn’t always easy. To be happy, self-actualized adults, people with albinism and their families need to find ways to cope with and learn from the not-so-good experiences. This quality of resilience is not innate. It can be taught and nurtured in people of any age. In this session, we will discuss what makes resilient people unique and how to help yourself develop these qualities and put them into practice.

Story Time with the Author

Story Time with the Author!
Kids grades 1-6 will have the exciting opportunity to attend a reading by the author of a beloved book. Reading selections are as follows:
Grades 1-2
“Claude: The True Story of a White Alligator” by Emma Bland Smith
Grades 5-6
“A Blind Guide to Stinkville” by Beth Vrabel
Grades 3-4

“Spotless” by Kate Hancock

These sessions are recommended for children with albinism and other NOAH kids in grades 1-6.

IEP Workshop

IEP Workshop
Kim Avila, Anne Corn, Kathi Garza, Marjie Wood, Jill Gorman
Preparing for the 2020-2021 school year brings new challenges to students, parents and teachers. This session will discuss the dynamics of navigating the IEP process for hybrid classes (partially in person) and virtual programming.

How We See

How We See for All
Matt Bailey
As a parent, have you ever wondered what your child’s vision looks like? As a person with albinism, do you struggle to explain what you can and cannot see easily? Are you frustrated when folks ask why glasses won’t fix it? “How We See” will show you simulations of what it actually looks like to see with albinism compared to normal vision. You’ll see first-hand why some things are challenging for people with albinism to see. You’ll also see why our vision isn’t as bad as you might think. You’ll also learn concrete answers you can use to help others understand how people with albinism see.

Teen Virtual Escape Room

Teen Virtual Escape Room
SESSION FULL!
Join us for a fun, virtual adventure where teens will be challenged to work as a team to beat the clock and solve an escape room puzzle.
This session is recommended for tweens and teens with albinism and other NOAH middle and high schoolers.

Ask a Teen with Albinism

Ask a Teen with Albinism
A talkative team of teens with albinism will tell their tales. This session will be an opportunity for family to quiz a panel of high school aged people with albinism about their experience living with albinism.

PWA Virtual Escape Room

PWA Virtual Escape Room
SESSION FULL!
Work together with fellow PWA’s to solve puzzles and unlock clues to your escape! Have a pencil, scratch paper and magnifier handy!

NOAH Dance Party

NOAH Dance Party
Show off your best dance moves at this fun and upbeat celebration featuring music, lots of laughs, and the best company. Even if you prefer the sidelines to the center of the dance floor, we bet you’ll have a blast at this fun-filled virtual party!

Thursday ~ Friday ~ Sunday