A cubed

My project titled A cubed- stems from a cause very close to my heart. I started working on Albinism Awareness and Advocacy at the young age of 12. I would like to briefly share my body of work within this sphere, hoping to inspire further action and encourage sensitivity to the cause. In order to make it relatable for everyone to understand I have divided my project over 3 verticals:

Vertical 1 Awareness

I am involved in working with NOAH (National Organization for Albinism and Hypopigmentation) which is an albinism support group- I have been writing for their quarterly journal regularly and have been publishing articles on subjects pertinent to encouraging and helping people who have albinism. Through my work, I strive to empower them to apply these insights seamlessly in their daily lives. A lot of content has been carefully put together from my personal experiences, and perspectives I have gained in my conversations with other people who face the same challenges. It has always been my endeavor to take immense care to choose topics that would appeal to a diverse age band and help old and young alike I have also been part of the NOAH choir where our team worked in tandem across the world. We put together a song that was featured at their 2020 NOAH conference.This was an amazing experience – apart from encouraging inclusivity we were also able to unite together for our common cause,providing everyone one with a voice and an outlet to self expression. I plan to continue my work at NOAH whole heartedly and add cheer and hope to the lives of many through it – Always keeping it real cheerful and moving towards a world which is more inclusive and sensitive to all.My articles will be published through the year and I am currently working on singing and recording a song to be included in their website and social media channels.

Vertical 2 Advocacy

Through my years I have always noticed that while there is some awareness about Albinism in India there are little to none support groups where one can sit and discuss day to day issues, have a laugh and avail of the help on more serious medical subjectsIn order to deal with real-life situations that can be handled, but require the advice of an expert to get started. It is with this heartfelt sentiment that I put together a talk on skin care by Dr. Nupur Jain and Dr. Sunita Lulla, who is a specialist in Low Vision from Accu Vision Center. We also invited an expert from the U.K who gave a lecture and mingled with the audience providing them assurance as well as very practical tips on how to handle day to day situations which might otherwise prove tough. In addition I attended a conference with Dr. Ahemed Temel from Istanbul, who introduced us to his telescoping glasses. Through my learnings gleaned at the event, and my newly grasped understanding of eyesight and vision, I plan to further impart the knowledge to others that need it and create an awareness drive to aid those in need of these glasses. In the future I will be planning many more motivating and interactive experiences. These will provide specialized advice to many which can otherwise be frightfully expensive and, therefore tough to obtain.

Vertical 3 Aid

I strongly believe that by providing financial support to even a single microcommunity supporting Albinism, I can create a lasting impact on the lives of people. Through this desire and belief stemmed my third project raising Aid for “Sikonge Special Needs” School”in Tanzania. I was able to raise a total of INR 50,000 and with these funds the school has been able to provide innocent little children sunglasses. These children’s lives are somewhat limited without access to sunglasses as the sunlight bothers their eyes and hampers their daily functioning. Without these glasses, activities that one takes for granted such as walking about in the daylight, playing sports or simply strolling freely in nature is not a possibility. Now, they roam more freely outdoors without having to deal with the discomfort that the sun otherwise would place upon them. The remaining funds will be used for sunscreen , stationery and English books for the school. I was additionally able to raise an additional INR 1,50,000, which went towards getting eye tests done, and greater investment in infrastructure (such as establishing sheds) protecting the students from the sun. I have also conducting online sessions to connect the children with specialists – such as a dermatologist from “SkinZest” – who gave a talk on affordable skin care. Little by little, my projects are coming together, and I am humbled to see how my vision has grown into meaningful work that is making a difference in the lives of many. I encourage each one of you to find a cause that truly resonates with your heart and strive to make a positive impact. As Theodore Roosevelt said, “Do what you can, with what you have, where you are.” What matters most is taking that first step—moving forward with compassion and a genuine desire to advocate for what you believe in.