My Big Pale, Blonde Family Reunion

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By Rebecca Darling 

You know that feeling you get when you have not seen someone in a long time? Yeah, that overpowering tingling sensation that moves rapidly from one foot to your fingernails. That is how I describe my anticipation of the 2014 National Organization for Albinism and Hypopigmentation (NOAH) Conference. From July 10-13, 2014, I reunited with my favorite pale and blonde family in sunny San Diego, California.

Every time I mention I just returned from a NOAH Conference, people give me the “What in the …. Is a NOAH Conference?” NOAH Conferences allow people in the Albinism community to come together for three days—to learn information, to share experiences, and to develop everlasting friendships. I love comparing NOAH conferences to family reunions because that is what it feels like—one big pale and blonde family reunion. After giving the gist of the conference, I receive the unavoidable question: “What is Albinism?”

Albinism is a condition where pigment is lacking in the skin, hair and/or eyes. Different types of Albinism exist and affect all races and ethnicities. Many comment about people and animals having extremely pale skin—some relate us to the villains in movies such as The Matrix and Powder. What people fail to recognize about people with Albinism is the visual impairment aspect. Everyone with Albinism has a visual impairment, but the degree of visual impairment varies from person to person. 

I did not attend my first NOAH Conference until July 2012. Until this point, I had only met two others with Albinism. Boy did I get a huge surprise in 2012. During my first conference, I was overwhelmed with helpful information—sunscreen, accommodations, vision aspects, and advocacy. However, one conference aspect was even more helpful—the social aspect. NOAH Conferences allow people with Albinism to meet others with Albinism and share experiences. However, most importantly, NOAH Conferences allow people with Albinism to find others who understand those awkward and/or terrifying moments caused by “outsiders.” NOAH Conferences are not just for persons with Albinism. These conferences allow parents, grandparents, siblings and professionals to learn as well. Throughout the conference, different sessions offer information ranging from young children with Albinism, to IEP information, to sunscreen, to bioptic driving and more. NOAH Conferences offer vast amounts of information, but helpful information.

When I attended my first conference, I was excited to see the sessions and interact with other people with Albinism. I wanted to gain as much knowledge as possible. After I returned to Ohio in 2012, I had a better realization of myself as a person with Albinism. As the 2014 conference approached, I started planning my conference activities as soon as the information became available. What would I see this year; what could I not experience in 2012; what do I want out of this conference. Ah, the questions one must consider before attending such an anticipated event! For me, social interaction is a huge deal. With the 2014 conference, I took full advantage of the time with my friends in the community. Some would comment that I missed valuable information. However, from my eyes, spending time with others like me offers the most important information. My friends and I went to San Diego to have new experiences, to interact and welcome others into our goofy circle. Nothing beats watching seven young adults with Albinism race go karts at 45 mph! Additionally, strangers’ reactions as 26 persons with Albinism invade the Gaslamp District of San Diego on a busy Saturday night really take the cake. From July 10 – 13, I spent valuable time with friends I graciously call my family. Nothing can replace these moments—not even offers of one million dollars.

In the days following the conference, social media outlets blow up with pictures, stories and comments regarding experiences. While reading these stories and comments, one realizes no two people share the same conference experience. From the first timers to the seasoned veterans, each person who attends a NOAH conference will take away different information. Naturally, teenagers have different experiences than older adults; kids learn information without realizing; everyone discovers something about himself or herself. Personally, the information I take away is to be myself; there is nothing worse they trying to hide one’s true self.

For more information about the National Organization for Albinism and Hypopigmentation, visit www.albinism.org.

See a video slideshow from the conference at this link.