NOAH Virtual Conference 2020: Day 1

NOAH is the National Organization of Albinism and Hypopigmentation, and they hold a conference every other year. Because of Covid-19, this year’s conference is being held virtually, and though this new method has its challenges, It has also enabled so many more people to attend than in previous years.

This is my first NOAH Con experience, because conferences, in general, are expensive. I’m looking forward to all the information, connection, and fun! I hope you’ll come along this journey with me as I cover as many of the sessions as I can manage.

To learn more about what albinism and what I see, check out my post on the topic where I discuss both oculocutaneous and ocular albinism as well as Hermansky Pudlak Syndrome.

You can now find many of the sessions outlined in my NOAH Con posts on Vimeo. Check them out here.

Welcome & Orientation

The opening session began bright and early at 8am PST and not so bright and early at 10:00 am CST where I live. The Welcome & Orientation mission was given by NOAH Executive Director Mike McGowan. He covered the origin of NOAH in the 80’s. Here are some bits from the session.

In 1982, NOAH was founded in Philadelphia, Pennsylvania.
NOAH was the chosen acronym based on a reference that the Noah from the Bible was a person with albinism. (Read more on this theory here)
NOAH operates primarily on donations, some grants, and other support, but does not rely on government support.
In 1983, the first issue of NOAH News was published. This is now known as Albinism InSight. I am a volunteer writer for this magazine.
In 1984, the group became incorporated as a non-profit 501(c)3 recognized organization.
They began piecing helpful information together for parents, people with albinism, teachers, and more throughout the 80’s and 90’s.
In 1993, NOAH had its first Adult Day for adults with albinism.
The first NOAH website was developed in 1995.
The mid 2000’s saw the addition of new informative tools, the publishing of books, the first family camp, and a national awareness campaign following the release of the movie The DaVinci Code.
In 2010, they hired their first executive director, Mike McGowan.

Three related organizations were mentioned:

HPS Network: A group that has supported those with Hermansky Pudlak Syndrome (HPS) for almost thirty years. It was founded by Donna Appell, who is the mother of a child with HPS. They also hold an annual conference.
Positive Exposure: This program is headed up by Rick Guidotti. Its mission is to change the way the world sees beauty through exposure and awareness. He takes beautiful photographs of people with various disabilities including albinism.
Asante Mariamu: This organization seeks to bring awareness to the atrocities committed against those with albinism in Africa.

Its biggest fundraiser is the annual Bowl-A-Thon. This year, this event will be called Spring for NOAH. Take some time to look it over and consider donating if you’re able. Donations, magazine subscriptions, and volunteer work makes NOAH possible.

NOAH’s vision for the world is one “where people with albinism are empowered to be fully functioning members of society, where barriers and the stigma of difference no longer exist, where people with albinism have a quality of life that is rewarding, dignified, and fulfilling.”

Opening Session

The Opening Session began with two NOAH members, Kelsey and Ed, offering some attempts at family friendly humor. They poked fun at some technical difficulties and how hilarious and obnoxious they can be. It was a bit goofy for my tastes, but I appreciate the effort nonetheless. Well done.

Next Executive Director Mike McGowan came on for another message about the generous donations that made the conference possible and free to attend. He encouraged everyone to take advantage of the information presented at the conference and to donate whenever possible. You can donate here.

Next, the board of directors came on one by one from their favorite spots within their homes to welcome everyone to the virtual conference. These board members included: Torey Alford, Donna Appell, Kris Baker, Emma Brinkley, Brandi Darby, Elizabeth Drury, Antonia Literas Espinosa, Christie Falco, Sonja Harris, Mark LaRue, Don Martin, Donte Mickens, Elliot Ostrove, and Mike McGowan.

Next, the recipient of the Michael J. McGowan Leadership Scholarship Award was announced. This award recognizes an undergraduate student with albinism in the USA or Canada for outstanding leadership and dedication. The recipient’s name is Aidan O’Connor and he is a senior at Yale studying ethics, politics, and economics.

The United Nations Mandate on Albinism

The first speaker was Ikponwosa Ero, and she is a lawyer and is the UN Independent Expert on the enjoyment of human rights by persons with albinism. She was the first person to ever be placed in this position in 2015.

The United Nations became involved in the welfare of persons with albinism when it became aware of the violence taking place against people with albinism in African countries and the prevalence of people with albinism who were on refugee status from African countries, the middle east, south Asia, and other areas.

Her work seeks to bring awareness to albinism and its challenges all throughout the world. She has connected with fifteen or more countries that have put policies in place to protect those with albinism. Challenges faced by those with albinism include disability, racism or “colorism,” other health issues, harmful practices and attacks, and more. You can learn more about the UN’s Mandate on Albinism and what it has accomplished by checking out their site here.

She also worked to help form the World Albinism Alliance with NOAH and Genespoir, the French albinism association.

Dr. Murray Brilliant

Next, the Dr. Carl Witkop Award was presented, and this award is to recognize a doctor or researcher for outstanding achievement in science and medicine in service to NOAH and the albinism community. Dr. Witkop was the founder of NOAH and was responsible for its name. The recipient of this award was Dr. Murray Brilliant.

Dr. Brilliant is celebrated for his 35 year career in research about albinism. He was the Director of the Center for Human Genetics of Marshfield Clinic, Wisconsin, United States. He directed the Center for Human Genetics, the Center for Precision Medicine Research, the Personalized Medicine Research Project, and the Wisconsin Genome Initiative.

His team is credited for discovering the genes responsible for OCA 2, OCA 4, and HPS 1.

Fun & Merch

The last segment featured various members of NOAH throwing sunscreen out of one frame of video and into the next person’s frame. It was quite entertaining.

Lastly, they presented a collection of NOAH conference shirts. If you would like to purchase one, you can do so here.

You can watch the Opening Session on Vimeo.

All About Albinism for Kids

Here, Dr. Murray Brilliant presented the genetics of albinism in a very kid-friendly way. He had several images, diagrams, and examples to help make the science a bit more digestible. It was informative and thorough, but still quite understandable.

Next, Dr. Rick Thompson, an Optometrist from Ontario, Canada, covered some basic information about Oculocutaneous and Ocular albinism. His focus was on the vision conditions related to both types of albinism.

Dr. Thompson broke down the differences that occur inside the eye of a person with albinism. He also discussed visual acuity, nystagmus, strabismus, photophobia, and more.

If you’d like to learn more about some of these conditions, check out my posts on the topic with helpful resources.

There was a short announcement about Creating an Albinism Resource for Education (The CARE Project) where you can go to learn more about creating Individual Family Service Plans (IFSP), Individual Education Plans (IEP), 504 Plans, and more.

You can watch the full session on Vimeo.

Town Hall Meetings on Gatherly

I was both very excited and very nervous to join my first Town Hall Meeting. These were set up through a service called Gatherly, and they essentially created a series of rooms designated as floors with an elevator and an exit on each floor. Each person is designated with an icon and his or her name. As you move around the room closer to other members, you will join a video chat room with whoever is nearby. I saw rooms as large as twelve or thirteen people that seemed to work well. I spent several minutes in rooms of nine or ten chatting about varying topics.

We had three floors in our Gatherly “building.” They included a lobby, an adults with albinism floor, and a parents of children with albinism floor.

I can’t express how wonderful it was to reconnect with people I hadn’t spoken to in years, to see and speak with people I normally only see on Facebook, and to meet new people who also have albinism. I honestly thought it would be disorienting, but it was wonderful. It has definitely already encouraged me to plan to go to an in-person conference as soon as I can!

Other Events

Other events that I was not able to attend included a Positive Exposure Zoom meeting and a Paint and Sip Happy Hour Zoom meeting. These sounded like great fun, but I did not sign up for any painting sessions, because I don’t have the room for a painting setup. I can’t wait to hear how those sessions went from others!

Be Sure to Come Back for Days 2 – 4!

As I get the other days’ posts up, I will link them below:

NOAH Virtual Conference 2020: Day 1

Welcome & Orientation