Awareness through Action

Awareness Through Action: Creating Productive Leaders in the Albinism Community

The conversation about human rights and albinism, is real. What happens after the conversation, can change the world. Many people start young on their journey to make a difference in the albinism Community, but it takes resources, planning and for a person to truly invest their own time and money in what they believe in. 

Fundraising on a large or small scale, Building Better Leaders in the Albinism Communityrequires credibility. Investing your own funds ensures your project is not hijacked or controlled by those, seeking to exploit your cause. Give yourself a realistic amount of time to host events and network with potential sponsors. A digital press release with substance and that is well articulated, can create interest. However success with previous events help create credibility. 

Everyone who dreams of changing the world, whether for the masses or a marginalized group, feel they are doing it differently. This is the main driving force within many of us. Simply believing that what they are doing or how they intend to do things… doesn’t exist anywhere. The truth is the best inventions are improvements, on things that already exist. I encourage you all to continue to follow your heart, but do your research. There is always someone who has come before us and someone who will come afterwards. However, if you do NOT document your own plan and organize your own thoughts.. you will NOT be able to articulate your Dream with value. 

Albinism Organization in Atlanta

Most individuals want to build a team and seek the glory of being a leader in a monumental way, but you have to except the responsibility of the charge as well. There may be no fame that comes from your work. Also, no sponsors may help push you forward without a way for them to benefit from your work. When you take the time to organize your efforts and it truly means something to you… you will continue your work no matter the size of the audience. 

True courage and confidence comes into play when we can see the big picture. There will be some backlash and a few obstacles, but a positive attitude, a well thought through plan and patience, will help you withstand the test of time. 

Create your own outlets and platforms to build an audience on your own Merritt. Articulating what you do in existing groups is quick, but remember that is a platform for someone else. When we lead by example and exercise patience it demonstrates confidence and is beautiful within itself. Celebrate the Beauty of Albinism by sharing your experience. 

Atlanta Based Albinism Support Organization

The Albinism Alliance Group is a social advocacy network created of and for persons with albinism, our friends and supportive family. The “INCLUSION INITIATIVE “, one of our many projects that requires we as persons with albinism, stop limiting ourselves with labels, empty conversation and separating ourselves from the masses to create a “false confidence “ through speech ONLY. We do NOT have to own the stigma the world has and understanding that many of them stem from someone’s experience with a person with Albinism… is the first step.

Understanding that low-vision is the disability and albinism is the cause of lack of pigment and underdevelopment of the eye which contributes to the reduced visual acuities, is the second step. It’s how this effects the quality of our lives that poses a problem. Albinism  may or may Not effect the color of skin, hair and or eyes. Sometimes it may effect only the eyes.

Stop focusing so much on the appearance of a person to distinguish the condition, but more so genetic testing can provide more precise information. What we look like doesn’t make us beautiful, but who we are can. It’s our hearts not our reflection that we should be celebrating. Awareness through action and joining forces, helps build momentum because you have several minds at work in multiple areas, simultaneously. Never stop being Afraid to create what doesn’t exist , but work smart to make an impact. Remember it takes time and you will do well. Thanks for reading. 

Albinism Docu-Series for TLC

Good Afternoon TAAG:

Document-Series TLCI’m writing to locate any families among us in and around the Atlanta area or bordering states that have two or more children with albinism. Other considerations include combinations where both parents and children have albinism or parents do not have albino but are parents to two or more teenage siblings with albinism. Preferably connections biological roots for family lineage. 

Examples are: Two sisters and a cousin or a Brother and sister and cousin etc or Family/guardians: parents without albinism but have two small/young children with Albinism . This is for a docuseries to be filmed for TLC. A Skype interview will be required and additional info will be provided to those who meet this criteria. While TLC is the learning channel this program is also providing entertainment. So, personality is a must!.

Please send emails with 2 photos to  info@albinism-alliance.org

More recently Perry met a group of Tanzanian children with hereditary albinism, who are being cared for by the Global Medical Relief Fund.

Tyler Perry meets a special group of children grateful for his support

 

International Albinism Awareness Day

Celebrate Yourself Everyday

The Albinism Alliance Group (TAAG) was formed out of a need for community in the Metropolitan Atlanta area, due to under representation by present organisations and leaders designated. We work together as a unit, using online communication, to keep one another encouraged and growing forward, by sharing experiences. We have been able to meet up and fellowship in informal settings and enjoy being ourselves without excluding ourselves from the masses or allowing ourselves to be exploited. The history of International Albinism Awareness Day, is important. We join with our brothers and sisters around the world to represent our community members, because each of us are someone to celebrate.

We are much more than the skin we are in

Human rights of persons with albinism is a real plight here in the US, but even more so in other countries. Discrimination for many basic resources is real and experienced often, no matter where we are. Self love, determination and the ability to preserver, can be key factors in learning how to make a mark in this world.  We are much more than the skin we are in, but In support of International Albinism Awareness Day, we have to join together to stop discrimination and promote the betterment of persons affected with albinism everywhere.

Human rights of persons with albinism is a real plight here in the US

We are talented and capable, due to low vision and the differences in appearance we are not often afforded the opportunity to show this in desired areas, this can reduce the quality of a persons life. Low vision plays a big role in this and persons non-affected by albinism may find it difficult to understand the impact of low vision depending on his or her own experience. There is something to be said about all who work toward some sort of normalcy in supporting themselves, getting around and accomplishing extraordinary things with the verbal and non verbal prejudice that exists. Your reward is earned and this day shows that with a measure passed in the UK, we now have June 13th, to officially celebrate “Albinism”. This was made effective as of June of 2015. See the link above for more details about the history of this measure. Hats off to us all! Stay connected to us via social media and join us as we continue celebrating the beauty of albinism, for years to come. 

 

Featured Members Segment- Niesha McBurrows

The Albinism Alliance Group is moving in to 2014 focussing on the next generation. WE are looking N_McBorrows-2for more accomplished members of the AB community to share their experience. We want to celebrate the beauty of albinism in the most distinguished and professional manner. In doing so we are looking everywhere for people who want to share an inspirational moment, day in the life of their career, or tell us more about what they hope to accomplish in the next 24 months. We can inspire each other in positive ways and TAAG wants to be at the helm of something new for our community.

Check out the first presentation of the featured members section Niesha McBurrows! She is an accomplished woman, earning her doctorate of pharmacy in 2006 and working her way to the top. She is a happily married mother of two and enjoys reading in her spare time. Ms. McBurrows is an advocate and volunteers in her community and we need more good role models like her. You can read her bio at http://albinism-alliance.org/featured-members/niesha-mcborrows-featured-member/

If you would like to be featured on our website, please write to us at info@albinism-alliance.org or use the form on the featured members page. Please remember to follow up with at least three photos and expressed permission to use them with your feature story.

Taking the World by Storm: Sir Maejor

B I O G R A P H Y

Sir Maejor decided to go into the acting and modeling arena because he wanted to take the world by storm. He is known for standing up for what is right, being different, setting tends and being original. Everyone want the money and the fame, but Sir Maejor wants to use his notoriety to create positive awareness for a topic that really doesn’t get discussed.​

Growing Up
anBnIn0Suffering from Albinism is difficult, and many decide to suffer quietly, and to live quiet lives. As a child and young adult, Sir Maejor suffered from the same taunts and stereotypes that many albinos do growing up. He often got talked about, teased and taunted because he has albinism. Sometimes even the word albino offends him, depending on how people use it. Kids and adults can be cruel, he has been negatively called Michael Jackson, Ray Charles, Other, Powder, White Out, Casper, Yellowman, Lab Rat, Rat Boy, Shaun Ross, and Similac. Because those names were maliciously shouted to Sir Maejor, it really bothered him.​

Sir Maejor says In terms of struggles and setbacks, being born with albinism has been one of the hardest things to deal with in his life. Many people born with albinism can’t see. They have poor vision which means in many cases they can never drive or get jobs that require 20/20 vision or better. He says he simply can’t see the things that you may be able to see.​

Another struggle he endured was he had to realize that he was different. Sir Maejor had to adapt with what he was born with. He had to get use to this inferiority complex about himself.  He wanted to be included and be in the popular crowd and feel accepted. But it was hard when he couldn’t do what everyone else could do. He couldn’t play basketball because I couldn’t see and in school, he couldn’t play out on the playground with the rest of the other student because the sun was out and I didn’t have sunscreen.​​

Goals and Aspirations
However, eventually Sir Maejor developed into the opposite of the common albino stereotype, an outgoing individual with dreams bigger than the skyscrapers on Atlanta’s skyline. Sir Maejor is here as an inspiration- and a reckoning- that what people identify as a disorder- can be a beautiful thing. Sir Maejor said he wants to create awareness about albinism, at the same time capitalize off his unique look, many may consider it to be a curse, but he considers albinism as a blessing.​

Sir Maejor is different and won’t allow that or anyone’s personal negative opinions of him or what he look like affect his life. One thing Sir Maejor hopes to accomplish is to show that people with disabilities, birth defects or disorders of any kind, can do whatever they desire, if they put their minds to it, something that is easier said than done. Sir Maejor tells other aspiring models to strive to make their dreams a reality, much like he is.​

Sir Maejor hopes to join the greats of (Zel) Denzel Washington, Will Smith, Dennis Haysbert and Kiefer Sutherland one day, and we can’t say we aren’t rooting for him. Sir Maejor wants to a iconic face in the business and responsible for taking your brand to new heights. Sir Maejor’s effervescent personality makes him hard to dislike; and his love of the spotlight will help him down the road in his career.​

Latest Work

Sir Maejor was featured as reoccurring background actor in Season 3 of FX’s hit TV series “American Horror Story” where he plays a Sentinel. He also is featured in films such as “Cinema One”, “Let’s Be Cops”, and “Need for Speed” all which will be released in 2014. Sir Maejor proudly thanks Directors Alfonzo Gomez, Scott Waugh, Micheal Bay and casting directors Robin Batherson , Jamie of CL Casting, and Tammy Smith

Filmography

**American Horror Story – Season 3

Cinema One

Let’s Be Cops

Need For Speed

 

External Links

http://www.SirMaejor.com (bio from website)

http://www.facebook.com/SirMaejor

http://www.twitter.com/SirMaejor

 

Albinism Is Not A Race…

Albinism is NOT a Race

 By Joma K. Leonard

If you are a person with albinism, (PWA) you’ve heard the question before so many times. You know, the question that bothers some and others accept. The question (esp. blacks) throw around about as much as they throw around the N-word. The question that sparks debate among PWA regarding what’s right, and what’s wrong. “Are you albino?” Yeah, that question.

 

Now if you’re a PWA and you don’t mind being acknowledged as “albino” instead of “an albino”, more power to you. I refuse, and there are a few reasons why. I can’t tell you how many times I’ve heard acquaintances of mine describe me as “he’s albino” before “he’s cool, funny, etc.” The content of my character as an individual is totally overlooked by a mere label that barely defines me accurately. I’m well aware the people who ask this question mean no disrespect often times, however knowing there’s still a wide misconception on what albinism truly is makes me speak my mind.

 

Albinism is genetic as we all know within our own community. Many races and ethnic backgrounds have PWA among them. We exist in just about every corner of the world. Some of us are in the medical field, some are models, youtube sensations, professional tweeters, high school dropouts who turned into productive members of society, mothers, fathers, spouses, and many other things. We have our own sense of individuality; either we’ve adapted to society or we’ve been walking our own path. Albinism is more common in animals; most commonly the rat. Why would we even accept albino in a racial context knowing this?

 

Maybe because it’s been a part of what PWA deal with since childhood. A lot of us have been raised to say yes to the question, “are you albino?” Maybe some of us are so fed up with being bothered by people we just say whatever to get them to leave us alone. maybe because it’s always been this way. It doesn’t have to be. It isn’t for me. Sure, I’m a PWA but albinism is not my race; nor does it describe who I am. I have my own answer to that question. What’s yours?

Support Recording Artist Anya Dixon

South Carolina has a new face and good spirit to put up in lights. Recording artist Anya Dixon and CEO of All A Music Productions is ready for her next CD. She will be performing live at the Lower Richland High School Auditorium on Saturday November 2nd, 2013. Doors open at 4:00 pm and the show starts at 5:00 pm. She is recording her new CD entitled “Overcomer”. With such a touching title, Im sure it is something that many of us can relate to.

If you are in the area or plan to make arrangement to be in the area, stop by and check her out. I have her previous cd, New Life, purchased on Amazon.com http://www.amazon.com/New-Life/dp/B002TWCKAK/ref=sr_1_12?ie=UTF8&qid=1381183740&sr=8-12&keywords=Anya+Dixon It was very inspirational. My favorite song off this album is “New Life”. This song really spoke to me with the career transitions and finding my place in this world. We are all talented in our own way, but the AB community seems specially gifted in the arts. With so many creative talents in the community it is difficult to keep up with all of them.

Today, we salute Anya Dixon for following her dreams and using her talent in the music industry. She will do well and The Albinism Alliance Group is wishing her the best. To follow Anya or to reach her for booking go to http://www.aamusicproductions.com

Brown Albinism is Real!

Type 2 Albinism also includes OCA1B and OCA2

Type 2—decreased pigment, but may still have freckles and moles. This form of albinism is more common among persons of African descent. This form may be associated with such minimal pigment loss that it is evident only by comparison with other non-affected family members.

A person with albinism will have one of the following symptoms:

  • Absence of color in the hair, skin, or iris of the eye
  • Lighter than normal skin and hair
  • Patchy, missing skin color

Many forms of albinism are associated with the following symptoms:

  • Crossed eyes (strabismus)
  • Light sensitivity (photophobia)
  • Rapid eye movements (nystagmus)
  • Vision problems

Often many individuals have not learned that they have albinism until they reach adult hood, often because they don’t fit the typical appearance of what many know to be associated with the condition.

Growing many persons have brown skin, brown hair and with albinism often being associated with the appearance of white skin and blonde hair, person not fitting this description go through a lot dealing with low vision and not knowing the cause.

We have to be open minded and accepting of what it means to live with the condition and must take steps to get assistance for children through early intervention for potential issues with the vision and skin care. Not knowing can cause the child to be delayed and become out of touch with accomplishing expectations set for him or her. There are different types of albinism and genetic testing and a simple I eye exam can help get more specific results.

Take a look at some examples of Type 2 Albinism that you may not have noticed before. We all live with low vision and different skin care needs as a result of albinism, but with attention to the proper care our eyes will aid us in accomplishing some great things.

OCA 2

 

Raising a Child with Albinism: A Guide to the Early Years

Book Description

Publication Date: January 1, 2008
Parents of children with albinism now have access to a one-of-a-kind book to help guide them through the unique challenges of raising a child with albinism. Unveiled at NOAH s 12th National raising-child-with-albinism-guide-early-years-paperback-cover-artConference in Las Vegas, Raising a Child with Albinism: A Guide to the Early Years is a 200-page volume containing contributions from close 20 different writers. It provides a singularly authoritative source for new parents of children with albinism.
Edited by NOAH member Susan DuBois, mother of two children with albinism, this informative and inspiring book is illustrated with color photos contributed by Positive Exposure s Rick Guidotti and eight others.Topics include:
– What is albinism?
– How will albinism impact my child s development?
– How do I stimulate my child s vision?
– The social impact of albinism
– Sun safety
– Early intervention and IEP programs
And MUCH more!
Funding for the four-year project comes from Northern Illinois NOAH and a grant from Delta Gamma sorority.

Editorial Reviews

About the Author

The National Organization for Albinism and Hypopigmentation (NOAH) was founded in 1982 to offer information and support to individuals with albinism, their families and the many professionals who work with them. NOAH s mission is to promote public acceptance and understanding of albinism and related conditions, and to encourage research that will lead to improved diagnosis and management of albinism.


Product Details

  • File Size: 2294 KB
  • Print Length: 200 pages
  • Publisher: The National Organization for Albinism and Hypopigmentation; 1 edition (January 1, 2008)
  • Sold by: Amazon Digital Services, Inc.
  • Language: English
  • ASIN: B0066CPYU2
  • Text-to-Speech: Enabled 
  • X-Ray: Not Enabled 
  • Lending: Enabled

Use this link to access the book on Amazon.com for your Kindle!

http://www.amazon.com/Raising-Child-Albinism-Guide-ebook/dp/B0066CPYU2/ref=sr_1_1?s=digital-text&ie=UTF8&qid=1380149796&sr=1-1&keywords=Albinism

Types of Albinism

Definition

Albinism refers to a group of rare inherited disorders that are present from birth. Albinism affects the amount of pigment found in the skin, hair, and eyes. People with albinism usually have little to no pigment in their eyes, skin, and hair, but the degree of pigment loss can be quite variable. There are four types of Albinism:

  • Oculocutaneous albinism
    • Type 1—complete absence of pigment. Skin, hair, and eyes lack all pigment from birth. Freckles or moles will not appear at any time during their lifetimes. This group is divided into several subtypes depending on associated characteristics.
    • Type 2—decreased pigment, but may still have freckles and moles. This form of albinism is more common among persons of African descent. This form may be associated with such minimal pigment loss that it is evident only by comparison with other non-affected family members.
    • Both Type 1 and Type 2 albinism are usually associated with visual problems includingnystagmus (abnormal jumping movements of the eyes) and decreased visual acuity, which is frequently not fully improved with glasses or contact lenses.
    • Type 3—reddish brown skin, reddish hair and hazel or brown eyes, generally black South Africans.
    • Type 4––similar to type 2, predominantly in Japanese persons.
  • X-Linked albinism––vision problems without changes in skin or hair.
  • Hermansky-Pudlak––in addition to albinism, persons also have lung, bowel, and bleeding problems.
  • Chediak-Higashi––in addition to albinism, persons also have immune problems with defects in white blood cells.

Causes

Albinism occurs as a result of altered genes. In most cases these genes are inherited from parents. It may be autosomal recessive or X-linked.

Autosomal recessive inheritance accounts for the vast majority of cases. This means that both parents carry one copy of an abnormal gene but do not have symptoms or signs of albinism. Children become affected only if they inherit one affected gene from each parent. In this form of inheritance, each child has a one-in-four chance of inheriting the condition. The abnormal gene reduces (or completely eliminates) the body’s ability to make a pigment called melanin. There are several dozen different genetic subtypes of albinism. Individuals can have full or partial absence of this pigment which will affect the color of eyes, hair, and skin.

The chance of inheriting an X-linked altered gene will vary by the sex of the baby. Females have two X chromosomes while males have one X and one Y. If only one parent is affected the daughter will have one affected X chromosome and one normal X chromosome. The daughter will be a carrier but not have signs or symptoms herself. The son however only has on X chromosome. If the X chromosone that the son inherits is affected than the child will have albinism.

 

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