Hey guys!
I came across the part of the NOAH site that talks about the new Nominations for the Board of Directors last week. I sat and read the descriptions, and am really interested in running for a position.
As many of you know, my name is Meghan and I am 25 with OCA um..i don't know what number. I have full-blown albinism. When i was born they didn't have numbers or letters. My vision is 20/200 wearing my contacts, and 20/400 without. I have been a part of NOAH since I was about 2 years old, the year it was created. When i was nine years old I decided that I wanted to make a difference in the world. i wanted to accomplish something even if I had albinism, and then become a motivational speaker. My goal was to become the first person with albinism to perform in a Broadway Musical.
Well, as my life went on, my path didn't continue along in the direction of a performer. I have, however, made a living working all over the country in technical theatre, and am residing now in Boston, MA. I work theatrical and event lighting. What you see during big rock concerts, I make the lights do that, and fix them, and place them there. It is a job that many people say you need excellent vision for. So, when people in my field find out that I am legally blind, they are usually quite shocked and impressed.
I have seen NOAH grow and develop since it's birth back in the early 80's. It was founded to help educate people on our condition and to help parents learn more about how to care for their child with it. There is no history of albinism in my family, and even with the beginning stages of NOAH, they did not have the Internet to easily speak with other parents of children who have albinism. They also could not speak with anyone directly that has our condition. NOAH was there to tell them about others living with albinism, and gave them plenty of information on my condition.
I feel that NOAH has been changing rapidly in the past few years. I have been an avid writer for this web board beginning when I was 12 years old, the time my parents first got Internet. There were many people with albinism on it, as well as parents. I started speaking positively about my condition and how I was overcoming the obstacles of everyday life. From the very beginning I have been trying to reassure parents and others with albinism that "it's ok".
Recently, I feel that NOAH is gearing more towards helping parents with very young children. I think that it is amazing. However, I feel that there is not enough happening in other areas of the organization. There are not as many people WITH the condition speaking on the web boards. Where have they gone? Why have they gone? Many discussions are about children that are 4 years or younger. Which, like i said is wonderful, but I want to see more.
If I were chosen to be on the board of directors of NOAH, I would like to help bring back more success stories of older people with albinism. There are teenagers through out the world that are being discriminated against because of this condition. Is there something more we can do to help them, to show them that it's just immature people and it will get better? There are college students terrified to jump in the job pool because of discrimination of our vision. Is there something NOAH can do to teach people who need to mention their low vision, how to interview well without fear of losing the job opportunity soley based on their disability? Many people on the web board have also asked about SSI and Disability. Is there something NOAH can do to better educate people who are legally blind with albinism on these very confusing programs? There are also developments with gene therapy, stem cell research on the undeveloped nerves in our eyes, new contact lenses, and better nystagnus surgeries. Why have I only heard about these on the web board, but hardly ever in the NOAH news that comes out every few months?
I would love to be a part of these possible new developments and have further discussions of my ideas and thoughts on NOAH. The board of directors and other members of NOAH have done an amazing job linking parents together in the conferences and bowl-a-thons. What I would love to achieve by being on the board of directors is to bring together all the age groups of people with albinism.
I hope you guys think that i am fit for this position. It has always been my dream to become a motivational speaker for those who are disabled, and to educate others that are not. By being a part of the NOAH board of directors, I would feel even more rewarded in helping others with this condition, and their parents.
If you would like to nominate me, or talk further with me, my e-mail is <lily525600@yahoo.com>
Thank you so much!
~Mwghan