Still Standing Strong IAAD 2019

Still Standing Strong: International Albinism Awareness Day 2019!

Celebrate the Beauty of Albinism by Sharing Your Experience!

We are The Albinism Alliance Group (TAAG)

IAAD 2019 StillStanding strong

It’s officially “International Albinism Awareness Day”, June 13, 2019 and many have been awaiting, yet another year to share the comradery that exists amongst us living with the condition of #albinism. The Albinism Alliance Group is excited to share in the festivities from Atlanta, Georgia. Although we are not hosting a major event this year it is our desire to host our first in 2020. 

This year we are taking advantage of technology and connecting with our brothers and sisters around the world and sharing what they are doing to commemorate this day of respect for the many challenges we may face, living with this condition. 

I (Ms.Rae Lowery) am a business owner in creative services and marketing design, who also works part time in retail sales support. www.cre8tivemedia.net Mrs. Dee Cuenca www.vare.net is the Author of the series My Life the Infamous Saga Buy “Intangible Love” Now! on Kindle from Amazon ” and coming soon to Amazon “Dilemma”. In addition she is the mother of 5 and happily married wife. With an exceptional family. 

A few moments with our family!

Still Standing Strong! IAAD June 13, 2019

In 2003 we set out to make a difference by joining efforts to create a comfortable way for persons with albinism to connect with each other in the metro Atlanta area. Initially our tone was focused on the betterment and representation of African Americans with albinism. As we matured we realized inclusion and being a part of mainstream culture was a more prevalent focus. To do this we simply decided to organize our ideas and present them with a unified message. 

Still Standing Strong IAAD 2019

Leadership Reflected in Our Choices

While we are 16 years into a journey that started when i was 25 years old, friends and family within the albinism community still work together to build a solid foundation for advocacy in the areas of low vision and personal and social adjustment. It is our desire to see not only that individuals in our area have a platform to use their voices collectively, but also that we are heard. Structuring delivery and investing in our presentation are a few of the ways we do things differently than the norm. Fostering moral through friendship and connecting one person at a time we have grown from three to a support network of 600+ individuals around the world. The world is a big place and we are glad we are able to make an impact in it.

Quite often it isn’t that opportunities to speak on albinism and surrounding issues are not available, but simply not accessible due to financial restrictions. Hosting events takes a great deal of planning and resources. Most often in my community, many of us are working hard to make ends meet and that about pushes us to our limits. Joining forces and sharing these costs can help level the playing field. The key has always been, to take control of the narrative and work as a team to create viable  solutions, for the things we need most. The next generation is venturing out independently, graduating from college and looking for work. Sharing our experiences can make this easier for someone else, in the most meaningful way. 

Grow with your cause and be intentional about progress.

Still STanding Strong IAAD 2019

My takeaway is, “use what you have… to do what you can.” Do not stress over comparing your efforts to those of someone else. You have what you need to create value for your work. No amount of education or special mention will grant you the “passion” to make a difference! It has to be a part of who you are as an individual. You communicate that by the choices you make and how you carry yourself. 

Listen to people in your community, learn what the issues are and work with others to build “real time” solutions that can be passed on to help others like yourselves. The conversation about human rights. relative to albinism is real, but its what we do after the conversation…  that makes a difference. 

Give yourself time to grow and invest wisely in your own mission. This builds credibility and demonstrates your strengths. Remember no one can take away your hard work and effort. Exhibiting gratitude for the ability to work toward something bigger than yourself is whats creates your legacy. Happy IAAD. Keep standing strong.  

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.