NOAH Virtual Conference Day 3 & 4
Albinism,  NOAH Conference

NOAH Virtual Conference 2020: Day 3 & 4

Day 3 had a wonderful mix of informative sessions from the researchers as well as from people with albinism. We also had a wonderful story time for the kiddos, virtual escape rooms, an IEP workshop, and more.

Day 4 was a bit about winding down with some yoga, a paint and sip sessions, advice on dealing with unwanted attention, and the closing session to wrap things up. Be sure to read until the end to find out where the next TWO conferences will be in 2022 and 2024.

Genetics of Albinism for Beginners

Dr. Murray Brilliant presented this session.

Albinism is a congenital genetic abnormality of melanin synthesis in which the amount of pigment (melanin) made by the pigment cell (melanocyte) is reduced or absent. It always includes specific abnormalities of the eye:

  • Reduction in iris and retinal pigment
  • Iris translucency (Globe transillumination)
  • Foveal hypoplasia
  • Misrouting of the optic nerves at chiasm
  • Nystagmus
  • Alternative strabismus

DNA is found in the nucleus (control center) of cells and it contains our chromosomes. DNA is the languages of our genes denoted by four nucleotides. Human genes have 22 pairs of chromosomes. One set comes from the mother, and the second set comes from the father. We also have sex chromosomes. Two X chromosomes designate a female, while an X and Y chromosome designate a male.

The human genome is essentially a book of human chromosomes. If it were written as a book, it would take almost 100 years to read. DNA changes in small ways over time naturally, but even a small change in DNA can have a significant effect on a person. If even one letter, one of the nucleotides mentioned above, is changed, it can lead to nothing or it can lead to big changes. DNA is still a bit of a mystery to science, because it is so vast.

OCA 1 and OCA 2 are the most common types of albinism.

  • OCA 1 occurs on Chromosome 11 where the Tyrosinase gene is located.
  • OCA 2 occurs on chromosome 15 where the P Gene is located.

To have a child with albinism, both the mother and father need to be carriers of an albinism gene. They need to be carriers of the SAME gene mutation for albinism as well. Below, I’ll break down combinations of parents and what percentage each of their children will have to be pigmented, a carrier, or born with albinism. Around 1 in 150 people are carriers for one type of albinism.

A genetic chart showing two carrier parents and their offspring

Parent Carrier + Parent Carrier (Same gene mutation)

  • 25% Pigmented – no carrier
  • 50% Pigmented – carrier
  • 25% Albino
Genetic chart featuring a non-carrier parent and a parent with albinism and their offspring

Parent Non-carrier + Parent with albinism

  • 100% Pigmented – carrier
A genetic chart featuring a carrier parent and a parent with albinism and their offspring

Parent Carrier + Parent with albinism

  • 50% Pigmented – carriers
  • 50% Albino

Parent with Albinism + Parent with Albinism (different gene mutation)

  • 100% Pigmented – carriers for both gene mutations

There are quite a few types of OCA that are known right now. Below you can see Types OCA 1, OCA 2, OCA 3, and OCA 4 in both human subjects and mice. Note that the level of pigment in these subjects is widely varied. We are still learning how and why this wide variation occurs.

A photo of OCA 1, 2, 3, & 4 in both human subjects and mice showing a variance in pigmentation

Recent discoveries have also revealed OCA 5, OCA 6, and OCA 7.

Three photos of people with OCA 5, 6, & 7

Ocular Albinism

Ocular Albinism (OA) is an X-linked form of albinism that is seen almost exclusively in males. There are rare cases of it occurring in females.

Genetic chart showing a father unaffected by OA, a morther carrier or OA, and their offspring

Father Non-carrier + Mother Carrier of OA

  • 50% sons affected
  • 0% daughters affected
    • 50% daughters are carriers

Women are often found with an OA diagnosis when they actually have a different form of OCA. Remember, Ocular Albinism occurs almost exclusively in males and is exceedingly rare in females.

Melanosomes make pigment in skin cells. There is only one enzyme responsible for creating melanin, and that is Tyrosine. OCA 1 is responsible for Tyrosine production itself, but other proteins help set the stage for Tyrosine production. The other types of albinism affect other proteins that are involved in the process of making melanin. Tyrosine is changes early on into a chemical called DOPA before leading to the creation of melanin (pigment). DOPA is thought to be important in a number of things independent of pigment. People with OA lack DOPA receptors and this may be what causes some of the vision issues in albinism.

Albinism has been around hundreds or thousands of years. The OCA2 mutation has originally come from Bantu speaking people of Africa to America through slavery.

There is a link between melanocytes and the leprosy bacteria as well, because one of the first signs of leprosy is white spots. Leprosy bacteria may act on some of the same functions that OCA2 does. It is thought that being a carrier for OCA 2 might offer an advantage to populations where leprosy is prevalent.

Dr. Brilliant also shared some of the plight that people with albinism in Tanzania and other African countries face. They are hunted in that part of the world and their body parts are used for witch doctor rituals and more. To learn more about how those with albinism in Tanzania are affected or to help with the cause, check out Under the Same Sun.

You can watch the session on Vimeo.

Resilience & Self-Care

Kelsey Thompson is a person with albinism from Chicago. She is one of three kids, and her younger brother has albinism as well. She works as a vocational counselor with the Veterans Affairs as a Licensed Professional Counselor.

Resilience is the capacity to deal with adversity and negative experience and move past those experiences. It allows a person to adapt and thrive in his or her circumstances. It is not an inherent trait that you are born with. It can be learned.

A sense of self-efficacy, hope, and belief in yourself is what leads to resilience.

What are the ingredients in resilience?

Adversity in Albinism

  • Inaccessible environments and products – the world is designed for the sighted
  • Rude comments, questions, reactions, and bullying
  • Negative portrayals of people with albinism in movies and TV
  • Transportation and mobility: the inability to transport yourself, transportation taking longer, or requiring the help of others
  • Lack of full independence
  • Sun protection, sunburn, being aware of sunscreen and when to wear it
  • Vision impairment and difficulties that come with that

Perpetuating Adversity

  • Romanticising hardship, suffering, and chronic adversity (inspiration porn)
  • Unrealistic media distortions
  • Pressure to bounce back and stay positive
  • Non-resilient qualities seen as weak or victimized

Stigma & Self-Stigmatisation

  • “… you have to decide who you are and force the world to deal with you, not with its idea of you.” -James Baldwin
  • Stigma – qualities or conditions that are viewed negatively by others
  • Self-stigmatization – internalizing and anticipating these messages
  • Social, medical, and mental health consequences
  • Perceived power imbalance
  • Creates social distance

The Paradox of Albinism

The paradox of albinism graphic featuring a yin and yang
  • Blind vs Sighted
  • Disabled vs Able-bodied
  • Noticeable vs Misunderstood
  • Beautiful vs Stigmatized

For another in-depth perspective on this, check out my article Coming Out as Blind: Embracing the Label Not the Limitation, where I discuss what it’s like to feel caught between the blind and sighted worlds.

Factors That Challenge Resilience

  • Day to day stressors – having a bad day
  • Major changes or transitions – changes in family, divorce, moving, etc.
  • Cumulative events – bullying, microaggressions, etc.
  • Acute events – trauma, natural disasters, etc.

Bullying

  • Bullying causes anxiety, depression, hyperactivity and impulsivity, inattention and conduct problems
  • At two years, the effects lessen
  • At five years, the effects had virtually stopped, though some older children remained vulnerable to paranoia or cognitive disorganization

How to Promote Resilience

  • Surround yourself with a loving support system and seek out positive relationships
    • You can choose who you surround yourself with
  • Make plans and follow through with them
    • Tell someone else about your plans as well
  • Develop communication and problem-solving skills
  • Maintain a positive view of yourself and your abilities
  • Practice managing your feelings and impulses
    • Life is trial and error
    • Be fair to yourself
  • Practice mindfulness
    • Meditation
    • Being present in the moment
    • Recognize your thoughts without judgement
  • Take an active role in improving your circumstances
    • Finding purpose and vision
    • These can be small choices and actions
  • Embrace self-determination
  • Reflect
  • Find meaning
    • Anything in your life can have meaning, even the little things
    • Find a positive perspective in everything you do

Personal Habits to Improve Resilience

  • Journaling
  • Meditation
  • Activities to broaden sensory experience – yoga, breathing, progressive muscle relaxation, etc.
  • Expressing gratitude
  • Leisure activities
  • Self-care

Combating Self-Stigmatization

  • Identify with a community
    • You are not alone
  • Seeking out role models within that community
  • Use constructive humor
  • Make connections and find humanity in others
  • Take pride in your accomplishments
  • Focus on your competence
  • Be persistent
  • Avoid making comparisons
    • Don’t compare your insides to someone’s outsides (i.e. social media)
  • Nurture your multiple identities and inconsistencies
    • You are a complex and beautiful individual with many different parts

Leisure activities are very important to resilience and mental health. Having leisure activities can add endless benefit to your life. Below are the results of a study on the effect of leisure activities in the lives of visually impaired people and a huge list of some of the resulting benefits.

The Value of Leisure Activities in the Visually Impaired (Study by Jesup, Cornell & Bunday, 2010)
Check out the study abstract and citation here.

  • Reduce social isolation
  • Enjoyment
  • Promote social connections with peers who share interests
  • Contribute to others
  • Promote feelings of acceptance
  • Provide stress relief
  • Provide support
  • Promote optimism about the future
  • Establish a positive self-identity
  • Experience new things
  • Challenge
  • Learn about yourself
  • Develop self-management skills
  • Develop skills and a sense of accomplishment
  • Challenge social stereotypes and prejudices about disability

Below is a list from an article from the website Psych Central about how to nurture resilience in your child.

How to Nurture a Resilient Child by Margarita Tartakovsky
Check out the Psych Central Post here.

  1. Don’t accommodate every need.
  2. Avoid eliminating all risk; offer age-appropriate freedom.
  3. Teach them to problem solve.
  4. Teach your kids concrete skills. Role play social skills such as explaining albinism to others.
  5. Avoid “why” questions. Instead ask, “How are you going to fix this?”
  6. Don’t provide all the answers. Help them brainstorm scenarios.
  7. Avoid talking in catastrophic terms.
  8. Let your kids make mistakes.
  9. Help them manage their emotions. Validate feelings, allow them to be present with their feelings, and then help them figure out what to do next.
  10. Model resiliency.

TED Talks & Books Recommended by Kelsey:

Amy Cuddy – “Your Body Language May Shape Who You Are

Daniel J. Siegel – The Whole-Brained Child

You can watch this session on Vimeo.

Story Time with the Author

This session was designated for grades 1 – 6 and included book readings by various authors.

Grades 1 – 2: “Claude: The True Story of a White Alligator” by Emma Bland Smith

Grades 3 – 4: “Spotless” by Kate Hancock

Grades 5 – 6: “A Blind Guide to Stinkville” by Beth Vrabel

You can watch this session on Vimeo.

How We See

This session was presented by Matt Bailey, who is a person with albinism. His wife also has albinism, but the two each have a different type of albinism and are the parents of a pigmented child.

Why Glasses Won’t Fix Albinism

The world does not look like a large blur to those with albinism. The eye is made of many pieces that can each affect vision. The iris is the colored part of the eye on the outside. Light enters the iris and hits the lens behind the iris at the front of the eye. The lens normally focuses light through the eye and onto the back of the eye where it hits the retina. When the lens is not working properly, refractive errors result. These include farsightedness (hyperopia), nearsighted (myopia), and astigmatism. These eye conditions can be corrected by vision. People with albinism have these eye conditions on top of the other eye conditions accompanying albinism.

Albinism results in issues with the retina at the back of the eye, and issues include the underdevelopment of the fovea. The fovea is important for fine 20/20 vision. The issues with the fovea cannot be corrected with glasses or contacts.

Vision can be compared to pixels of a camera or in a screen. A lower amount of pixels results in a lower resolution or less detailed photo. This is similar to what happens in albinism. We have less pixels, essentially, because of the issues related to the fovea and other internal eye structures.

Because albinism involves so many different eye conditions and each of those conditions can fall on a spectrum of severity, each person with albinism will have different vision, even if two of them may have the same acuity (20/100, 20/200, etc.).

Four photos comparing visual acuity by adjusting photo resolution
These four photos demonstrate visual acuity by adjusting photo resolution.

Matt continues to give several more examples using both photos and videos. The examples are fairly effective from my personal visual experience, but vision in albinism is very complex due to things like photophobia, nystagmus, and impaired depth perception.

For an even more thorough explanation of this topic from my perspective, check out my post Why Can’t Glasses Fix My Vision: The Albinism Perspective.

Five Ways We Adjust

  1. We get close to things. There is nothing wrong or unhealthy about this behavior. It spreads the dots or pixels over a larger part of our retina so that we can see the details.
  2. We make things bigger. This is especially easy with technology today.
  3. We magnify the images. This can be done with lenses or electronics. Examples include a magnifying glasses, CCTVs, bioptics, binoculars and monoculars, and more.
  4. We don’t need to see all the details. Examples include every grain of sand, every leaf on a tree, etc.
  5. We cheat. We learn to recognize patterns, auditory cues, and more.

Depth Perception

Because of the optic nerve abnormalities in albinism, our two eyes do not work together as well as eyes of people without albinism. Because our eyes do not work as well together, we lack stereoscopic fusion or 3D vision. This impaired our ability to measure distances accurately and can impair depth perception as well.

People with Albinism Have Normal Vision

We can have some depth perception. We generally have normal peripheral vision and color vision. Night vision works well in those with albinism as well, and albinism does not cause blind spots.

Q&A

Should my child wear glasses?
Generally, yes. It will improve their vision even if it does not give them perfect vision. It can also ease nystagmus and reduce some eye strain.

Should I get the best magnification for my child?
Not necessarily. You need to get the right tools for you child, his or her vision, and his or her tasks.

You don’t go to an ophthalmologist?
Ophthalmologists diagnose eye conditions, perform surgery, and treat eye disease. Everything else can generally be handled by an optometrist or a low vision optometrist.

Why do doctors make it sound so bad?
The medical model views medical conditions in terms of deficits or what is missing rather than focusing on what vision and aspects of vision are present. It is important for you as parents to be open minded and willing to try things with your child.

Takeaways from the conference for parents:

  1. People with albinism can see a lot more than you think they can.
  2. Every person is unique and so is his or her vision.
  3. To learn more about your child and his or her vision, ask your child questions and be curious.
  4. What you say about your child’s vision matters as much as what your child sees. Send positive and curious messages to your child.
  5. Visual acuity measures cones on the retina, but it does not measure quality of life.

You can watch this session on Vimeo.

Are You Ready for the Transition to College?

This session was presented by Susan Dalton. She has spent 17 years directing a transition program for teens with visual impairments in preparation for college, she is an instructor at Northern Illinois University teaching courses in special education and vision rehabilitation, and she is a parent of three adult children who have navigated the college process. Two of her children have albinism.

Transitioning from high school to college is a significant time in the lives of students and parents.

Considerations for Selecting a College, University, or Program

  • Follow the same steps as other high school students
  • The student needs to take charge of this process, it is his or her role to make these decisions
  • Start early as a junior or senior
  • Think about your interests
  • What education is needed for your goal career
  • What are the best schools to meet your needs for that goal career
  • Find your resources: counselors, teachers, and more

Five Critical Skills for All College Students

  1. Technology
    • Computers, software, accessibility tools, and how to get help when you need it
  2. Communication and self-advocacy
    • Know how to express yourself and your needs
    • Know your rights as a person with a disability
  3. Organization
  4. Time management
    • Organize and structure your own schedule
  5. “The Basics”
    • Meeting and greeting people, managing money, preparing food, and problem solving

Goals are so important when planning your future. You can follow this list to learn more about yourself and your goals.

  • What are your goals?
  • Talk to teachers, counselors, vocational rehabilitation counselor, etc.
  • What do YOU want?
    • Include your interests, things that motivate you, and use the local career center
  • Visit a college and see how you feel about the layout and the environment
  • Speak to others who are college students or who are transitioning with you as well
  • Relate your goals to the “real world”
    • Will your degree help you get the job you want? Is that job in demand?

How Prepared Am I? Ask yourself how prepared you are in each other these areas:

  • Academics
    • Gather your grades, class rank, classes attended, test scores, and more
  • Social
    • Can you go out and meet people on your own?
  • Independence
    • Are you ready to be away from home? How close do you want to stay to your family?
  • Daily Living Skills
    • Laundry, money management, cooking, cleaning, and more
  • Time management
    • Do you rely on others to make appointments and remind you of events?

If you’re not sure you’re ready, you can ask yourself whether you will benefit from additional services:

  • Extend high school
  • College prep training through the Division of Rehabilitation Services or Blind Services
  • Local transition programs
  • Take a few courses at community college before going full time

Make an appointment to speak with someone at the Support Services or Students with Disabilities office at the college you plan to attend, whether you think you’ll need the services or not.

  • You can explain your needs, disability, and previous accommodations used
  • Ask how to arrange services
  • How do I take notes in class?
  • What adaptive equipment is available on campus?
  • Is the library accessible?
  • Is transportation available on campus?
  • Is O&M training available on campus?
  • What are my responsibilities in the process?

What can you do now as a current high school student? Set high standards for any classes that you are currently attending, and be independent and responsible for you own work, time management, and organization. These are vital skills at college where you will be living independently. Begin learning how to take care of your own personal needs such as cooking, cleaning, laundry, money management, and other similar daily living skills. Take an active role in planning your own meetings with guidance counselors, college visits, and more, and don’t forget to plan for any necessary support systems you may need while attending college. Get to know any assistive technology you will need before you head off to college, because it will be essential.

If you are a Junior, it is not too early to start planning!

Transition Tips:

  1. Make yourself the expert on your disability
  2. Be an active participant in transition-related meetings
  3. Understand your accommodations
    • Strategies: What an instructor can do to make classroom instruction more accessible to you
    • Accommodations: large print, copies of notes and powerpoints, extended testing time, preferential seating, and more
  4. Create a Personal Information File & organize it
    • Current school records
    • Disability documentation
    • Immunization records
    • Social security card
    • Birth certificate
    • Visa or Passport
    • Everything sent or received from the college
  5. Research available financial assistance
    • Scholarships, Vocational Rehabilitations, Grants, and non-profits

Advice to Students

  1. Make sure you have a Division of Rehabilitation Services (DRS) counselor
  2. No one can speak for you in college
  3. Speak up when your needs are not met
  4. Think about campus accessibility when choosing a college
  5. There are plenty of resources for financial services to attend college
  6. Speak to professors and Office of Disability Services about your needs
  7. Speak to academic advisors about your pursued career and goals
  8. Manage your time wisely
  9. There are no exemptions in college; you are held to the same standards as every other student
  10. Proficiency in computer skills is crucial; know how to use and troubleshoot computers
  11. Don’t take classes just because your friends are in them
  12. Practice walking to classes or your dorm

Advice to Parents

  1. Explore the college community to find available resources
  2. Speak with other families going through the same transitions to learn from their experiences
  3. Work with the school to find out how your child can be meet his or her needs
  4. Help your child communicate about his or her disability and needs
  5. Observe what your child can do independently and help them to fill gaps where they may be missing skills
  6. Participate actively in meetings with the school and other professionals
  7. Help your child obtain key identification documents
  8. Help your child develop independence, communication, decision-making skills
  9. Help you child explore and set realistic goals
  10. Enhance and encourage positive self-esteem
  11. Help your child learn daily living skills: walk them through bill paying, cooking, laundry, cleaning, budgeting, and more

Helping Your Child with Employment

  • Be aware of available and in-demand jobs
  • Help you child obtain a part-time or volunteer job
  • Reinforce work-related behaviors: dressing, grooming, advocating, following directions, being on time, and more

Don’t forget recreation and leisure. Encourage participation in these activities. Teach your child how to utilize local resources and transportation.

You can watch this session on Vimeo.

Stares, Smirks, & Shout Outs

Kelsey Thompson is a Licensed Professional Counselor in Illinois. She also has a background in vocational counseling.

This session is all about awkward, malicious, or annoying encounters with strangers and how to deal with those as you’re going about your day. It is not about bullying or dealing with negativity from family, friends, and acquaintances.

There are three types of situations to be addressed:

  • The Silent
    • Stares, points, and smirks
    • Unspoken things you notice, but usually can’t respond to
  • The Rudely Curious
    • Questions and comments that are not meant to be hurtful
    • Often come across embarrassing or annoying (sometimes humorous)
    • “You know, you should try reading with your book a bit further from your face.”
    • “Oh! Your hair is so white! Is it natural?”
  • The Curiously Rude
    • Shouts, comments, or questions that have cruel intentions and serve only to humiliate
    • Rude Comments that are made within earshot
    • “Hey albino!”

Kelsey gave quite a few examples from her own experiences as well as other experiences she has heard.

  • How did your hair get so white?
  • Maybe you should get better glasses.
  • Are you albino or something?
  • Maybe if you take your sunglasses off, you could see better.

We began by talking about the ABC’s of a bad day. These are some basics of human experiences.

  • Affect: What emotions do these situations bring about?
    • Embarrassment, fear, feelings of worthlessness, feeling exposed, & more
  • Behavior: How are you responding physically to this experience? Which behaviors should I think about changing? What behaviors am I modeling to those around me (a child with albinism)?
    • Avoiding situations, blushing, biting your nails, fidgeting, crying, fighting back, responding with humor, staring down (hostility), drinking or taking drugs, withdrawing, & more
  • Cognition: What am I thinking during and after these situations? Are any of these thoughts irrational or self-defeating? Do I follow certain thought patterns repetitively? Do I make any assumptions? Do I have feelings of being “stuck” that I cannot get past?
    • “I’m such a freak.” “I should’ve never come here.” “Everyone heard that, now they’re all staring.” “Why does this happen every time I go out?” “When that lady asked if she could touch my hair, it made me want to scream.”

These experiences are unavoidable, and stigma and negative assumptions are everywhere. What can you do to lessen the impact of these events?

  • Talk to a friend or family member. Don’t be afraid to cry or laugh.
  • Write it down.
  • Choose your battles. Choose when to fight, walk away, or when to educate others.
  • Always look your best when out in public. Look good, feel good. You want to feel like your best self whenever possible.
  • Convey confidence with your nonverbal communication.
  • Stand your ground.
  • Know when to educate and when to walk away. It is okay to set and stick by your own boundaries.
  • Look out for your personal safety. Self-defense classes can give you confidence in this area.
  • If you can’t leave the situation, distract yourself with whatever you can (music, reading, tablet, etc.).
  • Let the bad stuff go. This is harder than it sounds, but choose to let those negative things go, because they do not have to do with you. They have to do with others.
  • Start each day fresh.
  • Seek professional help if anxiety or depression begins to interfere with your life.
  • Find a healthy outlet: music, art, exercise, etc.
  • Use negative experience to inspire others.
  • Don’t lose your cool.
  • Find a NOAH mentor to whom you can vent.

How can you maximize self-image through nonverbal communication? Nonverbal communication tends to affect our view of ourselves as well as others. Nonverbal communication includes posture, appropriate eye contact, visible appearance, gestures, facial expression, and speech.

What can you do to convey confidence?

  • Stand tall and straight
  • Keep your chin up
  • Don’t look down
  • Walk with confidence
  • Put your shoulders back, stomach in, and chest out
  • Look in their direction/make eye contact
  • Dress your best, fake it ’til you make it
  • Try not to fidget
  • Speak with confidence

Choosing to improve your physical health can help to make you feel better, look better, and be more confident in yourself. You can choose absolutely any activities that interest you including the obvious as well as things like knitting, healthy cooking, chess, and more.

She addressed resilience, which is the ability to deal with negative situations and move past them. She discussed this in detail in a previous session from Day 3.

Mindfulness can also have a positive impact on your life. It can reduce anxiety and depression, regulation emotions, and more. Its goal is to increase awareness, minimize emotional highs and lows, and increase your ability to experience life without judgment.

The Mirror Exercise

Try the mirror exercise. Imagine that your’re holding an antique hand mirror. The handle is heavy and brass. Imagine the mirror as you look into it. It is heavy and beautiful with some flaws. It is chipped and stained. Imagine all those aspects about yourself as well: pale skin, looking different, white hair, sunburn, answering awkward questions, not driving, and more.

There are three different ways you can hold the mirror that represent albinism.

Right up to your nose, gripping it tightly. The mirror dominates your view and doesn’t allow you to see the world around you. Everyone you meet is sure to notice it, and it keeps you from participating in social functions and enjoying your time with friends. Your arms and shoulders will start to ache. It is physically and emotionally uncomfortable to hold your albinism right in front of you all the time.

Push it away, holding it out in front of you as far as you can. Or you can hold it above your head. This works for a while, but eventually your arms and shoulders will hurt. You may look ridiculous.

Hold the mirror in both hands, relaxed and comfortable in your lap. It is close but not obstructing the view of the world. People will still notice it, but this position will still allow you to function. You are at peace with it and all of its qualities: the good, the bad, and the indifferent.

Tips to Help You Deal with a Bad Day

  • Keep a diary of significant events: what lead to the event, what happened, and the aftermath including affect, behavior, and cognition.
  • Personal affirmations (do this when you feel good or ask a friend for help):
    • I’m good enough because:
    • I’m proud of myself because:
    • People like me because:
    • Albinism is beautiful because:
  • Have an “elevator story” of albinism that is short, as vague or specific as you want, and something you are comfortable sharing with others about albinism. These are typically 30 seconds or less, and you can practice them.
  • Create a come-back bank:
    • Get a suntan albino -> Get a life, loser.

“The positive value of the negative experience comes when it propels an act of change, an act of kindness, or an act of reconstruction.”

Martin Challis

Dare to be different. Dare to be rare. You can celebrate your differences and enjoy them as well.

You can watch this session on Vimeo.

Closing Session

Executive Director Mike McGowan began by thanking everyone who worked hard to make this virtual conference possible and apologized to any he may have missed.

Sheila Adamo spoke about the Parent Connections offered through NOAH to support parents who are raising a child with albinism. If you are a parent of a child with albinism and you would like to join Parent Connections at NOAH, visit their site.

In light of the Covid-19 pandemic, NOAH is utilizing what it has learned to increase the use of technology to further its mission in these ways:

  • Support forums: group discussions focused on segments of the community or specific topics
  • Interest group meetings: these will bring parts of the community together with specific issues including parents without pigment, LGBTQ, adoption, and more
  • Education sessions: we will create virtual sessions on topics we were not able to cover during the conference
  • Social activities: these will allow the albinism community to hang out and enjoy fellowship and community

Christie Falco, the board development chair at NOAH, announced that NOAH will be searching for a few new board members in the near future. Please submit your application if you are interested in joining NOAH. Look out for informational resources in the future on this topic. To learn more about the current board of directors and find contact information, check out the NOAH website.

The National Organization of Albinism and Hypopigmentation (NOAH) Conference for 2022 will be held in… ORLANDO, FLORIDA.

The conference in 2024 is planned for Orange County, California.

A graphic stating that NOAH Con 2022 will be held in Orlando, FL, and NOAH Con 2024 will be held in Orange County, CA.

The NOAH Virtual Choir closed out the session with a beautiful performance of “You Will Be Found.” Thanks to Marleena Barber, her husband, and all the virtual choir members for submitting their recordings and putting this beautiful tapestry together. You can find the video here on Vimeo.

You can watch the Closing Session on Vimeo.

Conclusion

I have to admit, I cried quite a bit as I sat at my computer watching this. This was my first conference, and I will be attending future in-person conferences. I can’t express how important finding a community is when you’re a person who feels or looks different. It is life changing. I recommend you reach out and find your community.

Thanks for reading. Stay curious.

If you missed Days 1 & 2, you can find them below:

I have Albinism and am legally blind. I have a Master's degree in Clinical Mental Health Counseling. I'm currently pursuing my passion of writing through this blog and for the Albinism InSight magazine.

Leave a Reply

Font Resize
High Contrast
%d bloggers like this: