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. 

 

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?

Too White to be Black and too Black to be White: Living with Albinism

Quick Look

This book takes a close look at the life of a black male living with albinism. It gives the reader insight as to what life can be like for a black male or female with albinism growing up within the black community and the impact public humiliation, intimidation, and ridicule can have on an individual long-term. In addition this book can serve as a guide to both parents and young adults who may know someone or may themselves may be dealing with the hardship(s) of living with albinism. I not only discuss my own experiences but also those of others who have had a great influence in my life.

About the Author

Lee Edwards Book CoverLee G. Edwards was born December 27, 1961 in Tuskegee, Alabama. He is the son of Mr. Marvin A. Metcalf and Mrs. Margaret H. Metcalf. As one of five children which include three sisters and one brother he is the only one with albinism. Lee is a 1992 graduate of the University of Alabama at Birmingham with a Bachelor of Science degree in Human Resource Management. Mr. Edwards has been faced with the difficulty of living with albinism in the black community. In meeting the challenge he co-founded the Dayton Area Persons with Albinism in 1987. He also became a member of the National Organization for Albinism and Hypopigmentation (N.O.A. H) in 1987. Lee has had the opportunity to discuss the subject of albinism on radio talk shows in Ohio and Alabama. In June of 2000 Lee has founded the Atlanta Area Persons with Albinism with mid to long-term goal of hosting the N.O.A. H. conference. He has dedicated his life to making a positive difference in the lives of others who may be finding it difficult living with albinism.

Book Details

Too White to be Black and too Black to be White:
Living with Albinism
ISBN-13: 9781588200631
Publisher: AuthorHouse
Publication date: 5/28/2001
Pages: 132

AB Community: Giving Back

Arron Tookes logoWorking with Dr. Aaron L. Tookes Ed.d to come and speak with members in Atlanta at a venue for The Albinism Alliance Group. Dr. Tookes is an administrator in the Atlanta Public School System and was my mentor in high school. At the time, Dr. Tookes was working as a vision resource teacher and was instrumental in the positive development of all his students.

He went on to earn his Masters in Education and Ph.D in education administration from Troy State University, while teaching us. His experiences have granted him the wisdom to share. I have asked him to share with us. Will keep you posted on the day and time. Venue is Center for the Visually Impaired on West Peachtree Street.

Facebook Causes for The Albinism Alliance Group

Organizational Meeting in Fairburn

Organizational Meeting in Fairburn

Building a Powerful Impact w/Grassroots Albinism Special Interest Groups!

The Albinism Alliance Group or TAAG is an advocacy network organized to “Celebrate the Beauty of Albinism!” To accomplish this we serve as an informational resource to the community. We’re creating a series of information pertinent to understanding living with albinism and related characteristics. TAAG envisions a larger mulch-cultural resource by joining forces with other special interest grassroots organizations.

The Albinism Alliance Group was formed in March of 2003. and created from merging “The Atlanta Area Support Group” and online social network “Blonde Black Cuties”. Since then, membership has grown tremendously and we currently have 397 members around the world.

We have furthered endeavors with social networking, online activities, and meet and greets. Additional activities and events have blossomed into meaningful memories by giving people from all walks of life, an opportunity to share experiences of living with albinism. An informal atmosphere and camaraderie has contributed to irreplaceable fellowship. Join us at the next event. See you there! Follow additional updates for The Albinism Alliance Group on Facebook Causes

1. Celebrating the Beauty of Albinism

2. Developing Strong Core to Keep and Bring Persons w/ Albinism Together

3. Empower the Next Generation w/Education and the Ability to Limit Low-Vision Disadvantages.

4. Create and Connect with Visual Stimulating Communication Channels which feature persons with Albinism

5. Delivering a Cause that supports inclusion for All persons with Albinism.