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Kathi Garza, Family Engagement Coordinator, TSBVI Outreach Program

 

Abstract: This article describes an event hosted by the author to bring those in the albinism community together on behalf of NOAH, the National Organization for Albinism and Hypopigmentation.

 

Keywords: albinism, National Organization for Albinism and Hypopigmentation, NOAH, families, community, awareness

 

For the last 14 years, the National Organization for Albinism and Hypopigmentation (NOAH) has rallied its members to participate in an annual fundraising event. Members across the country organized Bowl-A-Thons raising money and awareness to help NOAH with its mission to provide accurate information about living with albinism and offer a place where people with albinism and their families can find acceptance, support, and fellowship. Albinism is a rare, genetic disorder that impacts the body’s ability to produce pigment. The lack of pigment in the eyes causes varying degrees of light sensitivity (photophobia), nystagmus, and poor visual acuity. Albinism occurs in about 1 in 17,000 individuals across all races and ethnic groups.

 

Since 2010, I have worked with various individuals and agencies to host events in Austin. This year, we decided to ditch the bowling shoes and have our event at a local park. On July 27th, the Austin All-Stars slathered on sunscreen, grabbed our hats and sunglasses, and connected with each other for our Albinism Awareness Picnic. Although it was the middle of summer, we were fortunate to have lots of shade and a nice breeze. Five families and two sets of grandparents attended the event where the kids enjoyed the playscape, played lawn games, and listened to a peer with albinism play the fiddle. The adults connected with one another on topics related to albinism and parenting, or grandparenting, in general. At noon, we were treated to a delicious pizza and popsicle lunch donated by Dr. Laura Miller and her team at Northwest Hills Eye Care.

 

Over the years, these events have meant a great deal to me and to the families who have attended. Watching children with albinism light up as they realize there are other kids “just like them” in the world is magical. Connecting with families as an adult with albinism is so rewarding. It allows me to feel that my experiences, the good, the bad, and those between, are relevant and can help other families with their own children. Now, as a parent to a young child without albinism, I have the opportunity to educate my son about albinism and visual impairments. These events are exciting for him, but to my surprise, meeting others “with white hair like mommy,” isn’t anything out of the ordinary. I also love when my mom can attend with me because I enjoy seeing her interact with families while talking about the way she approached raising a child with albinism. I’m so thankful to NOAH for encouraging members to host these events. I feel like I’m hanging out with family I never knew I had but that I can’t imagine being without. NOAH events really make 1 in 17,000 feel like a small world!

 

Kathi, her mom, and her son sit on a bench for a picture wearing their Albinism Awareness Day t-shirts.

Caption: Kathi, mom Beatrice, and son Keegan, enjoy coming together with others in the albinism community.

 

Below are a few thoughts from attendees about their experience at the picnic:

 

Mom Beatrice shared, “These events are great because they are like little family reunions. Everyone gets to talk and catch up on what’s been going on in our lives since the last event. I feel such pride as I witness my daughter, Kathi, an adult with albinism, encouraging attendees with her knowledge of resources, experiences, and personal thoughts. It’s nice that this can be done around the picnic table in an informal way.”

 

Nancy, grandparent to a young toddler with albinism, shared, “It was wonderful to meet adults and children with albinism. It was reassuring to see the kids playing normally and happily together. I enjoyed getting the chance to talk with other parents and adults who were wonderful resources.”

 

Mom Irene shared, “This was our first albinism awareness event. My daughter, Anabelle thought it was nice to talk to other people with albinism. It was also helpful to talk to someone who wears bioptic lenses.”

 

Two children and one adult with albinism pose for a photo at the park.

Caption: Anabelle, Kathi, and Areya at the 2019 Austin All-Stars Albinism Awareness Picnic.

 

For more information about albinism, or to get involved with NOAH, visit www.albinism.org.