EVENT DATE: Aug 07, 2014
About this Fundraiser
Our son Rhys was diagnosed with a form of albinism called OCA1 when he was 6 months old. The first few months were full of uncertaintly and questioning, as we came to terms with this diagnosis and wondered what it would mean for his future. Rhys will turn one this August, and we are amazed and overjoyed at how he has exceeded all of our expectations this past year.
In celebration of Rhys's first birthday, we will be collecting donations for NOAH (The National Organization for Albinism and Hypopigmentation). This organization has been instrumental in educating us about albinism, and connecting us with the support and guidance we needed when Rhys was first diagnosed. We would like to give back to this amazing group so that they can continue to help other families of children with albinism.
Albinism refers to a group of genetic conditions resulting in decreased pigment in skin, hair and eyes. There are two types of albinism: Ocular Albinism (OA) and Oculocutaneous Albinism (OCA). OA mostly affects the pigment in a person's eyes, while OCA affects the pigment in a person's skin and hair as well. Due to a total or partial lack of pigment in the makeup of the eye, every person with albinism has some degree of low vision. Albinism is present in all species and affects all races. Roughly 1 in 20,000 people worldwide have some form of albinism.
NOAH is a non-profit organization that supports persons with albinism and their families. Through member fees and donations alone, they run an infortmative website, publish newsletters, host bi-annual conferences and provide several channels of support for families of children with albinism. This group was our first source for information on albinism after Rhys was diagnosed, and we continue to receive support through them through newsletters, parents' support phone calls and connecting with other families. You can read more about the organization here http://www.albinism.org/.