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. 

 

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.