NOAH celebrated it’s 25th anniversary last weekend in Philadelphia.  Hats off to Mike, Lori, and the local planning committee.  It was wonderful celebration of where NOAH has been and a glimpse of where NOAH could go.

Here are my comments from that night.

“25 years of NOAH, wow, that kind of blows my mind.

I don’t remember that trip to the doctor at 6 weeks when I was diagnosed with albinism. Now as I parent, I can’t imagine what it must have been like to hear “don’t expect a lot of her, she probably won’t graduate from high school”. Thank God my mother didn’t listen. She battled long and hard with our school district for “reasonable accommodation” while at the same time refusing to let me use albinism as a crutch. Although it did come in handy for school projects.

I have to blame my 8th grade health teacher Mrs. Dougherty for my participation in NOAH. While conducting research for a term paper, I met this “older” woman with albinism named Jan Knuth. Yeah, I’m probably as old now as she was then.  Sorry Jan, age has very different meaning when you’re 14.

I did get an A on the paper by the way.

So Jan had this idea to do a conference for people with albinism.  Cool! You mean I could meet other people that look like me? Oh I am all over this. I have no doubt that Jan would have done this without me, I’m just glad I got to come along for the ride.

At dinner the night before, when Dr. Carl Witkop outlined the necessity for a support group and shared the name NOAH, I was exuberant, but I had ulterior motives. I’d already met Jeanne Leek, a talented artist with albinism who was, by my estimation was the coolest, but I wanted to meet MORE people like me.

In 25 years, I’ve met lots of people with albinism.  Some very much like me, some very different, but I am better for having met each one.

So if you’ll indulge me for just a few minutes, I’d like to share some memories.

I remember the first time I saw another person with albinism read.  I finally understood why they made fun of me.

I remember the first time I ever saw nystagmus in another person with albinism. No wonder I was the staring contest champion.

I remember many trips down I-95 with my mom and Dennis for endless discussions at board meetings about by-laws or what color the brochures should be.

I remember the teen rap session in Minnesota that just wouldn’t end. And, at that same conference, scaring the bejeezus out of my mother because she was unable to pick me out of the crowded swimming pool.  For once, I blended in!

I remember thinking I was “all that” when I traveled from Boston to the Hartford Connecticut conference by bus, all by myself.

I remember hanging out on the helicopter pad in Chicago in 1992 and really feeling an incredible sense of belonging.

I remember my friend Jennie George telling me about this guy Mike McGowan.  He had albinism and she was on a crusade to get him to come to the Adult Day in Chicago. He was a little hesitant at the time.

I remember seeing my old friend Tim Laughlin at the 1994 conference and knowing then he was the man of my dreams who just happened to have albinism. He hates compliments and the limelight, so I won’t dwell, but I will say 13 years and 2 snowballs later, I’m one lucky woman!

I remember the thank you post on the NOAH webboards from Haroon’s father. Haroon was 6 days old in the spring of 1996 and the California hospital didn’t know what to tell his family about albinism. Dad found NOAH’s web site and got the information and reassurance he needed.

I saw Haroon, and his Dad at the conference in Minnesota last year. They are thriving.

Then there was that photographer from New York who wanted to take photos of people with albinism.  Yeah right buddy, over my dead body. Who knew that 3 years later, I’d be travel traveling through Australia with that same photographer. Who knew what an incredible impact his work would have on the albinism community?

I remember Jeaninne Stearns suggesting NOAH hire someone to handle some of the administrative tasks.  Whhhaaaaa? Not do it all ourselves??? The board voted to give Lori Aubrey & precise processors a “trial run”.

I remember thinking I’d have the youngest child at the Boston conference and getting beat out at the last minute by a family from Maine with a 6 week old.  Cool! They were getting the right information from the start.

I remember thinking that I’d have the youngest child for sure at the Atlanta conference.  Timmy was 6 weeks old and we were both in a post partum haze, but we were beat again by a little girl born the day after him!

I also remember the Atlanta conference because my then 4 year old daughter Trisha met a 6 year old girl with albinism. As we walked away Trisha excitedly said ”Mommy she has alvinism, just like me“ never mind the chipmunk reference, it was all I could do not to lose it right then and there. Isn’t that what I’d wanted for myself all those years ago?  To find friends who looked like me?

I’ve given a lot of my time and energy to NOAH, but gotten ten times more in return.  25 years ago when we sat at that table eating dinner, I really had no idea what I was getting into.  All these years later, I’m just grateful to everyone who has worked so tirelessly to grow and support NOAH.

So, with all due respect to MasterCard, I’ll leave you with this:

Trips to board meetings and conferences at least $5,000.
Hours spent as a volunteer, writing articles and html and planning conferences, too numerous to count
Meeting some of my closest friends, pigmented or not, Knowing that parents now have immediate access to accurate information about albinism and, most importantly that my kids won’t grow up feeling isolated by their genetics

Priceless.”

I’m a sap and I know it.  There were more than a few times that my eyes got watery both as I wrote and read my presentation.   My contributions to NOAH are among some of my proudest accomplishments.

NOAH presented each of the founders with a beautiful clock commemorating the occasion and thanking us for our dedication. The clock is truly lovely, but I got all the thanks I could ever want when Kelsey Thompson stood up at the end of the formal presentations and said “I’m 27 years old and I don’t remember a time without NOAH”.  I got goose bumps when I heard her speak those words. 

Long live NOAH and heres to everyone with albinism getting connected to NOAH and the albinism community.