NOAH: National Organization for Albinism and Hypopigmentation

This post is part of a nine-part year-end giving series on organizations we love.

You all know that I (Elizabeth) and our youngest son, Jay, both have albinism, a genetic condition that affects hair, skin, and eyes by inhibiting the body’s ability to produce pigment. Sixteen years before our family ever became directly involved with NOAH and before we had children, I had been concerned about an eye surgery recommended by my opthalmologist, who did not seem to be familiar with albinism. Desiring a second opinion, I reached out in an online forum of others with albinism (all complete strangers at that point), and the connection I made with a knowledgeable physician quite likely saved me from a mistake that could have had lifelong consequences. NOAH was exactly what I needed.

In 2010, when NOAH held its biennial national conference only a few miles from our home near Washington, DC, I worked up the courage to attend with seven-year-old Jay. I was amazed to discover not only a whole sea of platinum and golden heads at that conference (around 1000 people in attendance) but also an entire world of people with albinism from every continent who were facing challenges and questions similar to my own. Many of them were thriving in their interests and competitive in their careers. Many shared hacks for overcoming common obstacles. Some were facing matters of life and death, success and failure.

I was both deeply encouraged and also impressed with a sense of responsibility to contribute to this community with care and support and to participate as a friend. I had the sense that, as Jesus himself had said, “Freely you have received; freely give.”1

*Jay, Pete, and I have made our way to several NOAH conferences since 2010–once as an adventure from DC to Pittsburgh by bus.*

I have enjoyed being part of this supportive community ever since, affirming NOAH’s mission to serve people with albinism and their families by providing accurate information, support, and fellowship. I joined the board in late 2016 and stepped down in May 2025 after 8 years of service.

That board role gave me the opportunity to see the inner workings of this frugal organization that accomplishes tremendous work through volunteer effort and individual donations. On a shoestring, NOAH . . .

sends a welcome kit to the parents of newly diagnosed children and follows up by connecting them with other parents who have been through the same experience
offers educational guidance for the parents and teachers of young students struggling to see textbooks, the board, etc.
helps teens wrestling with being different to connect and gain perspective with others at conferences, summer camp, and online forums
offers webinars and connection groups for young adults about topics like pursuing careers with low vision, driving or navigating transportation, living independently, dating, and more
convenes researchers, doctors, and product developers to share the latest research or problems related to vision or dermatology
advocates for the needs and concerns of people with albinism in the US Canada, and abroad
and much more.

Would you consider joining us in support of NOAH this year? Last year, we and our friends (you!) were able to give a combined total of $5,000–funds put to immediate use. Thank you!

You can donate through the website or by contacting the organization. Find out more on the NOAH Website:
https://albinism.org/

If you’d like to hear about my personal spiritual journey in thriving as a person with albinism, click here for a video in which I share the story at a church.

**Please note that NOAH is not a faith-based organization, and my Christian sentiments do not reflect the organization’s positions.**