Category: Albinism

International Albinism Awareness Day

I wrote this article and it originally ran in the Concord Monitor Friday June 13, 2015. It is reprinted here with permission.

My daughter is reviewing brochures for educational travel programs. “Sooooo I’m guessing Tanzania is out.” I look up at her and give her the “look”. She’s sitting across the room from me so I know she doesn’t see my face. Not because she’s not looking, but because like me, she has a hard time seeing details like facial expressions at distance. “Sure honey, you can go to Tanzania if you have a death wish or can spare a few body parts.” I wish I were joking.

The four of us sharing a laugh in Hawaii. My husband and I and our two children are albinos. We all have the genetic condition albinism.

Like their father and me, my children have albinism. Since the records started being kept in 2000, more than 147 people with albinism have been murdered primarily in countries in eastern Africa; and there have been another 229 acts of violence including mutilations, grave desecrations and kidnappings. These figures are as of June 3, 2015 and are compiled by Under the Same Sun, a Canadian charity focused on ending the atrocities and bringing basic human rights to all people with albinism. In Tanzania and other East African countries, people with albinism are hunted and their limbs hacked off and sold to witch doctors for inclusion in potions that are said to have magical powers and will promote prosperity and wellness. So no, my daughter will not be going to Tanzania, or anywhere in East Africa for that matter.

Albinism is a genetic condition. It causes a lack of pigment in the skin, hair and eyes. Most people are more familiar with the term albino but some in the albinism community find that label offensive. Albinism affects all races. In the Western world, albinism typically affects 1 in 20,000 people. In Africa that number is anywhere from 1 in 2,000 to 1 in 400. People with albinism are born with decreased pigment in their skin, hair and eyes (oculocutaneous albinism OCA) or just the eyes (ocular albinism OA). People with albinism, or PWA’s as we commonly refer to ourselves, have light colored hair and are fair skinned, and we also have varying levels of decreased visual acuity. A large majority of PWA’s are considered legally blind, which means that their best corrected vision is 20/200. That doesn’t mean we’re totally blind, but small print and things at a distance are hard to see. We have nystagmus which is an uncontrolled motion of the eyes. Even though our eyes shake, we don’t see the world as always in motion, but it does mean our brains have to work harder to provide a stable image. PWA’s are sensitive to the sun and bright light (photophobia), so it’s not unusual to find me wearing sunglasses even on an overcast day. We also burn easily. In the U.S. we are fortunate to have easy access to sunglasses, sunblock and sun protective clothing. Also, people with albinism likely have jobs that are indoors.

A Tanzanian woman who lost her right arm to attackers that wanted to sell it to witch doctors.
Image courtesy of Under the Same Sun

In Africa, things like sunglasses, hats and sunscreen are virtually impossible to come by. According to Asante Mariamu, a U.S.-based non-profit committed to providing education and support PWAs in East Africa, most people with albinism die from skin cancer before the age of 30. Less than 2% of PWAs in Africa make it to their 40th birthday.

A lack of understanding of the genetics of albinism and prevalence of myths means PWAs in Africa are shunned and often live in fear for their lives. For example, it is believed that having unprotected sex with a woman with albinism will cure AIDS (it won’t). Another common belief is that touching a person with albinism can bring illness, bad luck or even death, because albinism is a curse brought by the gods or the dead.

A Tanzanian Toddler already showing signs of severe skin damage from the sun
Image Courtesy of Asante Mariamu

People with albinism face discrimination and bullying in the U.S., but on a completely different level. There are social stigmas and challenges to becoming gainfully employed. When I was in school, I was teased and called Casper the Ghost or White Cap. There was the high school physics teacher who used to like to yank open the shades so that the sun would shine right in my eyes. Then there was the prospective employer who upon discovering I might need accommodations (a larger computer monitor), altered the job description so I was ineligible. When I was alone, I felt very alone in my struggles.

I finally met another person with albinism when I was in the 8th grade and researching albinism for a health report. Jan Knuth was a social worker in Philadelphia. When I watched Jan, I was able to step outside of myself and see myself as others did. She squinted in the light and when she read things, it she brought them right up to her nose. I did those things too, but never gave much thought as to how those behaviors might look to others. In so many ways, that meeting changed my life forever. As a direct result of our meeting, Jan and I and six others, including my mom and my step-dad, founded NOAH, the National Organization for Albinism and Hypopigmentation (www.albinism.org), a non-profit that provides information and support for people with albinism and their families.  33 years later, NOAH is thriving and considered one of the leading resources for people with albinism.

Through my work with NOAH, I’ve met many other people like me and formed lasting relationships, including one with a special man. Pat Laughlin was an early member of NOAH’s board of directors. Sometimes she’d bring her son Tim to board meetings and we’d hang out and were just friends. In 1994 the NOAH national conference returned to Philadelphia and attracted more than 400 attendees. At that event, Tim and I saw each other for the first time in a few years and the rest, as they say, is history. We were married two years later.

We talked early on about wanting children and the likelihood that they would have albinism. It was thought that Tim and I had the same type of albinism. which means that, we only had defective genes to pass on so there was a 100% chance our children would be affected. We proved the theory in 2000 with the birth of our daughter and again in 2004 with our son. We were very fortunate to have very supportive families. We were raised to live to the best of our abilities and not to use albinism as a crutch. We were encouraged to ask for help when we needed it, but to seek and find our own limits.  We were college educated and self-supporting. We figured we’d be in a good place to support kids with albinism. We already had shades on the windows, an ever-growing collection of hats and gobs of life experience.

Because of the support I’ve had, I view albinism as an inconvenience. Not everyone is that lucky. Some parents can’t handle a child with differences. The children are raised to believe that they are victims of their albinism and I personally find this hard to stomach, especially in light of the conditions that PWAs in Tanzania are born into.  Albinism is a challenge, but to me, in the bigger picture, it is an aggravation.

The first reports of people with albinism being attacked in Tanzania came in 2008. On June 13, 2013, the United Nations adopted its first ever resolution expressing concern at the attacks and the “widespread discrimination, stigma and social exclusion suffered by persons with albinism.”

In 2014, surrounded by representatives from albinism support organizations around the world, the United Nations declared June 13th International Albinism Awareness Day. The day is set aside to raise awareness of albinism and encourage increased human rights for people with albinism the world over.

Lee Laughlin with her children Timmy 11 and Trisha 15

2015 is the first International Albinism Awareness Day and groups around the world have scheduled events and educational opportunities. Today, I tip my hat and raise a bottle of sun screen to honor my fellow albinism advocates who have worked so hard to shed light on the atrocities and bring equality and basic human rights to people around the world.

For more information about please visit these websites:

International Albinism Day www.albinismday.com

The National Organization for Albinism and Hypopigmentation (NOAH) www.albinism.org

Under the Same Sun (UTSS) www.underthesamesun.com

Asante Marimu www.asante-mariamu.org

United Nations Website on Albinism albinism.ohchr.org

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15

Dear Fish,
IMG_043815.
Wow.
FIFTEEN years.
That’s a long time!

It’s been quite a year. You are discovering so much about yourself, your strength and weaknesses and what you want out of life. It’s exhilarating and exhausting and I’m only WATCHING.

You completed 8th grade wrapping up what you described as some of the best years of your life and made the decision veer from the beaten path that the majority of your peers followed. Your choice to attend a science and technology focused charter school IMG_1110_2was a good one. The environment suits your independent mindset and your self-motivated learning style. By all accounts, you are keeping your teachers on their toes as they strive to challenge you. Your grades reflect your commitment to learning and being the best you can be. We still need to get you to ask for help sooner rather than later, but that’s a work in progress (I know pot meet kettle).

Thank you for talking to me, for sharing your fears, your concerns and you dreams. I know for sure I’ve been helpful in some cases. In others the jury is still out and I’ve definitely made mistakes, but I will continue to listen and try to answer your questions and address your concerns as best as I can, even when they make me squirm.

IMG_2619You’ve had some challenges this year, but you’ve faced them head on and are working to find your new normal in an ever-shifting landscape. You’ve also had some major successes. You managed food and sunscreen at 2 weeks of Girl Scout camp and you biked 102 miles! Here’s to another active summer! In November you were promoted to junior black belt in karate and you continue to develop your skills. As previously mentioned your grades are great, and you are getting a lot out of your regular volunteer work at the elementary school. You’ve had your bioptic for a few months and I think it has broadened your world, but I’m looking forward to seeing you use it more.

We’ve traveled in New Hampshire and afar to San Diego and Hawaii. You are truly a pleasure to travel with. You handle yourself well and you are curious about new places. I’m looking forward to new adventures!

IMG_1595You’ve entered the world of social media and while this is a tad bit unnerving for me, I truly enjoy your posts. Your passion and sense of humor come through. Your passions this year include all things Grey’s Anatomy (Team #MerDer FTW!), equality for all and music just to name a few.

I love your style, it’s all your own and it works for you. Keep on rockin’ it girl!

I can’t wait to see what fifteen has in store for you.

Happy birthday!

Love,

Mom

IMG_1466_2

Summer 2013 Summary

Well, I guess by now, it’s tradition that this blog is ignored during the months of July and August. 2013 was no different. Now that summer is “over” here’s a quick look back at what was going on when I wasn’t here.

June

On the left Mim & his tent mate at Cub Scout Camp on the right the San Diego Sky Line

As the school year wrapped up, Mim headed off to his second year at Cub Scout camp.  Once again he had a blast and this year, he even tried a few new foods. Whoo Hooo! At the end of the month, I headed out to San Diego for a whirlwind trip as part of the leadership team for the 2014 NOAH conference. I am coordinating social activities, so basically, I got to play tourist. San Diego is a lovely city and I’m looking forward to getting back there!

July

July 2013

The highlight of July was Sarah & Bob’s wedding. They’ve been together since high school and she is the first of the next generation of cousins to get married. It was a lovely wedding held on Cape Cod and afforded me the opportunity to laugh and visit with family and long-time friends. This is my mom’s side, so it was even more meaningful for me to reconnect with everyone.

Both kids attended NOAH family camp, and had a blast, while we were at the wedding. Special thanks to Grammy for keeping an eye on them while she also ran the camp! Mim did a Lego camp over what was possibly THE hottest week of the summer. Fish did a half day video production camp and later in the month they both did a three day Apple Video camp (bonus it was FREE!).  While there, she made her first personally funded major purchase, an iPad Mini. She baby sat and saved enough for the Mini, AppleCare, a screen protector and case. They’ve been inseparable ever since.  We squeezed in showings of Monsters University and Despicable Me 2 as well. At the end of the month, Mim tested for his 3rd degree black belt.

August

August 2013

August was a magical month.  We kicked it off by surprising the kids with a trip to Florida. We blew the trip off the surprise chart when we announced that we were going on a Disney Cruise. The vacation requires at least a post or two of explanation, but suffice to say it was an AMAZING experience. We rounded out the trip with stops at The Kennedy Space Center and SeaWorld, more info to follow.

Sprinkled in between were a few trips to the lake, our annual weekend with our friends the L’s (I didn’t take ONE picture!), the occasional play date, and several trips to the water park (we bought season’s passes).  We also celebrated Kristen and Ed’s marriage and celebrated Nicole as she prepares to marry my nephew Jeff. We ended the month with our 4th annual Back-to-School breakfast the day before school started. Then, it was time for the real thing!

Fish and Mim on their first day of school.

Now that I read back on all we did, it’s no wonder we had a laid back Labor Day weekend.  We all needed it!

Time Passages – Congratulations Ed & Kristen

Ed and Kristen sitting on the alter at there wedding ceremonyMy mom talked to their moms when they were both just tots. I’ve watched them grow up and then grow together. We share a genetic condition that identifies us, but doesn’t define us. They are a decade *cough* or two behind me.

We’ve been to many of the same events and share some fantastic memories. As they grew and matured, they became leaders in the albinism community. The people that parents sought out for information and reassurance. She’s an pediatric oncology nurse and he’s a tech guru with mad video skillz.

They met as teens. Her mom pulled me aside and asked what I knew “about this Ed kid”. I told her something to the effect of “relax, he’s good people.” Six years later when the finally “clicked”. He tried to introduce her to me. Like I hadn’t been following both of their trajectories for eons. Not meddling, but not really surprised when they became a couple either. I laugh and still bust him about it to this day.

The bride and groom entering the receptionI get a strange feeling when people who are on the periphery of my life comment or congratulate me on a life event. Though now that I’m the one watching time pass, I have a better understanding of why it happens. It’s a small sense of pride. Do not get me wrong, I am not trying to take credit for the awesome adults they are today, no that lies squarely with four parents who loved, challenged and set expectations. I was just part of the so-called village. I stood on the sidelines and cheered. Occasionally offered advice when it was requested (sometimes when it wasn’t). Mostly, I watched in awe as two kids grew and matured into two amazing, successful adults. Taking notes all the while so that my kids can benefit from their experiences. I hold them up to my kids as examples of what you can become with hard work and dedication.

I was truly honored to be invited to their wedding. The celebration of their marriage, the joining of two amazing human beings and two wonderful families. Congratulations Ed & Kristen. Thanks for letting me be part of your village and thanks for being part of the village that supports my kids.

eandk_group

 

Muzzie

I am beyond thrilled to say “Goodbye and Good Riddance!” to April 2013. While the month started off joyfully as we celebrated my daughter’s entrance in to the teenage years. On April 3rd, it took a dark turn when my mother passed away. Her death was sudden, but not entirely unexpected. She had not been in good health for a long time. Then came the Boston Marathon bombings and subsequent pursuit of the suspects. The service was being held in West Roxbury, a part of Boston. The lockdown came dangerously close to delaying my mother’s memorial.  Plus, I lived in and around Boston for seventeen years and still have very strong ties to the city. To say the least I was a little rattled.  And, in a case of monumentally bad timing, my husband had an unusually high, (for him), number of travel days this month. So yeah, April sucked. I’m looking forward to better days.

This are the words I shared at my mom’s memorial service.

RuthRyan

On behalf of My Aunt Joanne and our families, thank you all for coming to remember my mom. This morning I will share some memories and music to pay tribute to my mom, we’ll welcome Fr. Richard Bradford from St. Theresa’s to share some words of faith, then I will invite anyone who wants to share a story or remembrance of my mother, to do so.

While meandering through this process, I learned a few things. Let me start by sharing them. First, there are over 1500 versions of Amazing Grace on iTunes. Second, the Philadelphia Police and Fire Pipes and Drums Corps have a CD entitled Guns and Hoses.

It’s no secret that towards the end of her life, my mother had a lot of challenges and some of you only ever knew the woman who chose to isolate herself and battled a host of demons, but there was so much more to my mother than that woman.

My mother was an artist by vocation and a teacher by training. She had incredible artistic talent that informed everything she did. She was known far and wide as the woman with the beautiful hand writing.

She may have lived outside of Philadelphia for 20 some odd years, but she was a New Englander through and through.  Fried clams and lobster were her favorites. She grew up here in West Roxbury surrounded by friends and family and recounted fondly her time at Notre Dame Academy and Boston College.  She would rather have gone to art school, but pragmatic Irish parents who had lived through the Great Depression convinced her to pursue a degree in elementary education at BC. Despite not being her first choice of career paths, she enjoyed teaching and she was good at it.

She met my dad in New York and they married just down the street at St. Theresa’s in what looks to be a beautiful wedding Alas, their marriage was not meant to last.*

When the doctor diagnosed me with albinism. He told my mom I’d be blind and possibly deaf and mentally impaired.  He said not to expect a lot from me, that I probably wouldn’t graduate from high school.

Thankfully, she didn’t believe him. She ignored the doctors directive and treated me like a “normal” child only with lots of hats and longer sleeves. She never said “You can’t do that.” Well not until I got to my teens and we were talking about how I couldn’t stay out until all hours of the night.  Instead, she recognized that she didn’t understand how I saw, so she encouraged me to find my own limits, to find my strengths and never use my albinism as a crutch. She educated herself and by her own admission made it up as she went along.   She taught me the meaning of the word perseverance. She advocated for me fearlessly and passed those skills on to me.  She was always my biggest supporter. My growing to be a successful independent adult was her goal in life.

Along the way she brought Dennis into our lives. A man she loved deeply and who stepped up to be a father figure for me.

She let me know know that emotions are something that everyone feels and it’s ok to be angry, but what matters is what you do with that anger.

She taught me that EVERYONE deserved a smile and respect and that making friends with the secretaries and the custodians was the key to success in this world.

When I was growing up we had awesome parties at our house. There was music and laughter and lots of food. She was the consummate hostess and fussed about every detail, insisting the drapes NEEDED to be vacuumed and that the yes crystal bowl was necessary for the shrimp shells. Her perfectionism was a double-edged sword throughout her life.

She taught me how to drink responsibly. She even taught me how to grieve.

She’s been described by many as elegant.  She cared about her appearance looked like she stepped out of a fashion magazine, even in the lean times.

I still remember the look of horror on her face when I announced at 11, that like the Neil Diamond song, I too would be “forever in Blue jeans”. She was cursed with a daughter who’s idea of a designer label is L.L. Bean.

I have lots of fun memories including the surprise party she threw for my sweet 16. Or the time she inadvertently baked her purse while making her world famous brownies.

I always knew she had my back. When my seventh grade math teacher insisted that despite what it said in my IEP, he didn’t NEED to enlarge my test because he saw me reading paperback books in the cafeteria. I knew this was a battle best handled by mama bear. The next day I had an apology and the opportunity to retake the test in large print.

When I was in 8th grade, I had to write a report for my health class. Naturally, I chose albinism as my topic. While helping me hunt for sources, written in English as opposed to medicalese, she found a woman with albinism who worked in Philadelphia.  A meeting was arranged. It was the first time I met someone who looked like me. The meeting was life changing for both of my mother and I. Not long after that, my mom and Dennis helped to plan a one day conference for people with albinism. She even managed to get the preeminent authority on albinism Dr. Carl  Witkop to come and speak (on his own dime). The night before the conference, at dinner, Dr. Witkop strongly encouraged us to form a national non-profit to provide information and support for people with albinism. I thought this was a wonderful idea. Eventually, the other 5 adults at the table agreed and NOAH, the National Organization for Albinism and Hypopigmentation was born. She stayed up all night creating a membership form. Going forward, she and Dennis wrote the newsletters and she spent hours on the phone counseling parents who had just received the diagnosis.  NOAH is almost 31 years old this year with a solid membership base and strong web presence. There is enough work to support a part-time executive director and full time administrative coordinator.  Accurate information about albinism is literally available in the blink of an eye. I know she still cared about NOAH and albinism advocacy because when I cleaned out her apartment I found a stack of NOAH’s Albinism info business cards and Albinism Insight, the quarterly magazine.

When I was in high school I had a very full extra curricular schedule to put it mildly.  Dinner was a necessity, but time was a luxury, so occasionally, we’d have 7-11 picnics: 2 hot dogs, a bag of chips and a soda. Healthy? No, but it filled the hole and what mattered was that we ate together.

She was my own personal clipping service sending me articles and tell me of TV shows she thought I’d be interested in. I found a folder of recent clips her apartment.

Once she sent me back to college with a banana bread she made and froze. One morning a day or two after my return my roommate and I woke up to an AWFUL oder. In our sleep addled stupor, we stumbled around our small dorm room like pinballs trying to find the source of the stench.  My roommate eventually held up the tin foil wrapped loaf.  When we unwrapped it, we discovered meatloaf instead of banana bread. From then on, she was known as Meatloaf Mom.

She devoted her life to raising me to be an independent, self sufficient adult. When that happened, she had little to fall back on. As I set about writing this, there are large gaps, time when I have no stories. The distance was too great. It makes me sad but I can’t say I have regrets about my own choices.

I know without a doubt, that she loved me and was proud of me. She was thrilled to be a grandmother and deeply enamored of my children.

Her own choices greatly limited her ability to participate fully in life but I don’t want to dwell on that here.

Instead, I want to ask you all to learn from her mistakes. Pride and independence will take you far in this world, but sometimes we all need a little help and it is ok to ask. That’s what friends and family are for. Clean underwear is important, but not having any at the ready should never be a reason to avoid going to the hospital. I also have it on good authority, that ER docs are not checking out whether your hair is done or you are wearing make up when they are evaluating you for a gall bladder attack, just sayin’.

Despite her quirks, she was my mother and she literally gave her all to insure that I could live a good life. Complaining about the outcome feels a tad like biting the hand that fed me.  I only wish she could have applied the same caring and kindness to herself that she gave so freely to others.

Rest in peace Muzzie.

We Only Live Once in a While (I had a better version of this song, but it’s not available online).

When I Grow to Old to Dream – Linda Ronstadt


*My parents went their very separate ways, but recently they had kept tabs on each other through me. My father sent a lovely bouquet of flowers for my mother’s memorial service. 

 

 

 

Pedal, Pedal, Pedal!

To: Jeff Elrick, It’s Ability Pediatric Physical Therapy Center

From: A Proud Mom

Dear Jeff:

A year ago, my son Mim, could not ride a two wheeler. He was afraid of falling and we were both very frustrated. His vision and some coordination issue weren’t helping either. He spent three mornings with you and your wonderful staff at Bike Camp and when we parted ways, he was wobbly, but he was on his way.

Last week he and I rode 6.2 miles, a circuitous route from our home to his school and back. His starts and stops are still a little rough, but he improves a little every time we ride. Most importantly, his confidence is through the roof.

This is all your fault!

Thanks so much!

Lee

 

2012 NOAH Conference

Author’s Note: This post is rather specific in nature, it is intended to provide information and support for people attending The NOAH conference in St. Louis July 12-15, 2012. NOAH is a national non-profit that provides information and support for people with albinism (albinos) and their families. Members and interested professionals gather every two years to learn the latest information and share experiences. Over 800 people are expected to gather in St. Louis next week. What follows is my personal perspective and does not necessarily represent the policies or perspectives of NOAH or it’s leadership. I hope it is helpful.

Breakfast at the NOAH conference in Washington, D.C. in 2010 almost 1000 people gathered to learn more about albinismNOAH’s 2012 Conference is just days away. I’ve been to every NOAH conference and still, I get excited every time I read the schedule and pre-conference materials. Attending a NOAH conference is like attending a family reunion with people you’ve never met. Despite the fact that most the people in attendance are strangers, everything and everyone are very familiar. It can be overwhelming. Overwhelming in a good way, seriously when have you ever seen so many people that look like you in one place? Overwhelming in a more challenging way; wait, which shirt is my kid wearing? Overwhelming in terms of the amount of information shared both actively (in the sessions and in the conversations with other attendees) and passively (by observation of all that goes on around you).

To minimize information overload, take a look at the schedule at-a-glance in advance and make some general notes about which sessions appeal to you. Upon arrival, you’ll be given a conference program with full descriptions of each session and you can refine your choices from there. Don’t be afraid to take a break to catch your breath and process what you’ve heard. Not all learning goes on in the sessions. While the they are chock full of useful information. Some of the most powerful experiences happen in the halls between sessions or at discussions around the lunch table.

Be prepared for an emotional roller coaster. You’re only human if you experience anxiety going into a new situation. Be patient with yourself it will pass as you grow more familiar with the hotel and the conference space and as you meet other attendees in the same boat. There is a map of the conference space online. Take a moment to print it out and familiarize yourself with it.

Conference highs come as you share experiences with others and reinforce that you are not alone. There is a thrill that comes from learning new information and maybe finding a solution to a nagging problem. There’s fear and frustration as you hear tales of the challenges that some people face dealing with schools and employers. The albinism community is diverse as the population of the U.S. Not everyone deals with challenges in the same way. Not everyone is in the same place on the journey towards albinism acceptance. Try to keep an open mind and respect the differences as much as you appreciate the similarities. Keep the information that is useful to your situation and disregard the rest.

A group of kids with albinism on the floor in fromt of the projection screens at the 2010 NOAH Conference.This is going to sound obvious, but remember that most of us can’t see well. You and I hit it off on Friday, but when I see you again on Saturday, you’re wearing a different shirt. I’m not sure if you are the same fantastic person I spoke with before and I am leery of making a fool of myself until I’ve invaded your personal space to read your name tag. <grin>

Now, a few thoughts on how the conference is run. I’ve attended every NOAH conference. I’ve was local conference coordinator in Boston in 2000 and National conference chair for the following three conferences (Concord, CA, Atlanta, GA and Minneapolis, MN). Have you ever seen the carnival act where the performer is spinning plates balanced on the tops of long polls? Running a NOAH conference is JUST like that. Unlike a corporate conference, registration fees do not cover the costs of executing the conference. A conference for over 800 people is now managed by two staffers and as always, executed with the help of a horde of volunteers. It is worth noting that neither staffer works full-time for NOAH and the conference doesn’t even account for 1/4 of their job responsibilities, although I can assure you, that some days it feels like the conference is 110% of their job. Where conference planning is concerned the focus is on providing a top-notch, safe, educational and enjoyable experience for the minimum amount of money.

When you read hotel banquet services menus, they always list the price of an item and then ++. That means plus service fee, (fee charged by the hotel to cover the cost of staffing, and facilities, typically 18-20%) AND plus local and state taxes (anywhere from 5-20%). It is the ++ that drives the cost of a cup of coffee from $3.50 to over $5 and when you multiply that $5 by two-thirds (not everyone drinks coffee) of the adult attendees at this conference you are rapidly approaching $2,000 just for morning coffee! When you consider that the cost of dinner typically STARTS at $14.95++ for chicken caesar salad (no beverages, no desserts), I hope you can understand that most non-profits including NOAH, prefer to spend money in ways that better serve their members.

When thinking about the programs offered or how things are run, please remember that these are volunteers giving up their own personal time to educate and enrich the albinism community. Before you complain think about how much time you have to work on a conference?

Now, for some practical tips:

  • Wear layers. Hotel temperatures are NOTORIOUSLY fickle. One room might be a deep freeze while another feels like a sauna. Having a sweater or a light jacket will improve your conference experience.
  • Bring your favorite data collection device. Doesn’t matter if you are old school (pen and paper) or high tech (iPad and wireless keyboard), have something with you to capture information. There will be a lot of it.
  • Bring your favorite data sharing device. You’re going to meet a lot of people some of whom you’ll want to stay in touch with. Bring business cards, Post-It® notes, or your phone. So you can give your contact information to others.
  • Always allow yourself extra time to get to and from conference sessions. Elevators can be a bottleneck (they are also a great place to meet people). Until we develop effective transporter beams, it is better to add 10 minutes to your planned departure time to insure you arrive on-time.

A-Man & I the night before our wedding.I have special memories from every NOAH conference. At the first national conference in Minneapolis, the teen discussion group ran so long we had to relocate to another room twice because no one wanted the discussion to end. In Chicago ’92, the young adults took over a helicopter pad. In Philadelphia I reconnected with the man who would become my husband. There is always at least one memorable elevator experience. It Atlanta, my four year old daughter met another little girl who had “alvinism”, just like her. Despite having been to every NOAH conference since she was born, that was the first time she made the connection. In D.C. in 2010, my son found his own “posse”. No doubt about it, NOAH conferences are magical. I can’t wait to see you all in St. Louis.