2018 NOAH Conference

First Timer’s Guide:

How to Get the Most from the NOAH Conference

Welcome to the 17th National NOAH Conference!

We are happy you’re here! You’ll find that NOAH conferences are like family reunions where you may not know many people, but you still have a special bond with everyone. There is a special magic for people with albinism and their families when they come together with others in the albinism community. We invite you to take full advantage of the unique opportunity presented by this NOAH conference. And to help, following are some suggestions for you to get the most out of your time at the conference.

For Everyone

Plan – Take time to review the conference program and decide which sessions and activities are of interest to you. Planning helps you make the best use of the limited time you’ll share with the albinism community.

Learn – Attend as many sessions as you can, even those that may not sound interesting at first. You will gain valuable insight into aspects of living with albinism you may not have considered, and which may be helpful to you in the future.

Ask Questions – Feel free to ask strangers and presenters questions, even if you are usually shy or reserved. We are all seeking the same information and are concerned about the same issues and problems. The only stupid questions are those not asked.

Socialize – Make a point to participate in as many social activities as you can. The conference will be over before you know it. Often times you can learn as much or more from others who share your situation than you can from formal presentations. Meals are a good time to meet others. Public places on the hotel grounds, the pools and bar are good places to interact with others in a comfortable setting. If you find yourself with nothing to do, hang out near the meeting rooms and exhibit area.

Observe – It is natural to find yourself gazing at other adults and children with albinism. This may be the first time you have seen someone else with albinism or you have seen so many people with albinism in one spot at the same time. Be polite while you observe others, and allow others to check you out without feeling self-conscious.

Express Yourself – During some presentations or special moments, you may experience a variety of emotions. Laugh, cry, lend a shoulder, take a hand – you are in an environment where everyone has been or will be in your situation. In the albinism community, we are all family and you’ll find that other attendees are willing to help!

Share Your Perspectives – Be willing to share your own experience as a person with albinism or the parent of a child with albinism and learn about the experiences of others. Your perspectives and knowledge about albinism may help others.

“Albino” versus “Person with Albinism” – Members of the albinism community will use both “albino” and “person with albinism” when referring to their own or their child’s condition. While NOAH uses the term “albinism” in written materials, NOAH recognizes that some members of the albinism community are comfortable with and use the term “albino.” Please keep in mind that others may not be comfortable with the term “albino.” Some may react negatively or find the term offensive because it has been used in hurtful ways.

Problems – NOAH’s goal is to make this conference a positive and worthwhile experience for you. If you are not enjoying your conference experience, see one of the conference organizers or a member of NOAH’s Board of Directors. If you think that something about the conference isn’t quite right, please keep these things in mind: The volunteers who plan and execute the NOAH conference are not professional event planners. They are just folks like you. Your registration fee does not cover the total cost of the conference. NOAH subsidizes the conference from general funds and from contributions solicited specifically to pay for parts of the conference. We have worked hard to make this a good experience for you.

 

Adults with Albinism

Connect – Use the discussion groups, mealtime conversations and the adult social events to get to know folks you wouldn’t otherwise have met. Try to find the people who live in your area to share knowledge of local resources.

Make New Friends – Consider keeping in touch with some of the people you meet at the conference, even if it is just sending an email to them from time to time.

Celebrate – Enjoy the beautiful rainbow of people with albinism who make up the community into which you were born by virtue of your condition.

 

Parents of Children with Albinism

Kids’ Conference and Daycare – We know it’s hard but try your best to leave your child in the Kids’ Conference or Daycare. Trust that your child is having fun and being cared for properly so that you can get as much as you can out of the sessions. Once children see their parents, they think that it’s time to leave the Kids’ Conference. Remember, the volunteer staff will find you if your child really needs you. Feel free to leave your name and the sessions you plan to attend with your child’s group leader.

Network with Other Parents – Meet with other parents. Feel free to initiate a conversation and ask questions. You may want to seek out people in your area to share information about local resources.

Network with Adults with Albinism – Feel free to initiate a conversation with adults with albinism. You can gain some of the greatest insight into your child’s future by interacting with adults with albinism. Most adults with albinism are more than happy to talk about themselves, just as anyone is, and, a NOAH conference is the last place that your inquisitiveness could be deemed offensive.

Divide and Conquer – There may be a time when you wish to attend two sessions that are scheduled simultaneously. If you are attending with another adult, split up to cover both sessions and share your notes. You will be able to collect more information and experience more.

Sessions – If you absolutely need to be with your children rather than leaving them in Daycare or the Kids’ Conference, and you are attending with another adult, consider switching off. One adult can tend the children while the other fully participates in the sessions. If you find yourself dealing with a very young child during a session, hang out in the exhibit area. You are likely to find others in the same situation with whom you can network.

And Most of All – Have Fun!

Better Together - NOAHCon 2018