Here at the Global Leadership League, we focus heavily on the concept of community in our Chat Boxes, blogs, LimeLight Interviews, and association programs. And, as we all know, there are all different forms of community and all different types of communities out there. The beautiful thing about communities is that they cross all boundaries- they are not gender specific, socio-economic specific, or even culturally specific. In our latest blog, we are delighted to share the story of a member of our own League community, Venkata Madhuri Gunti.

Madhuri comes from Hyderabad, India, and has 11 years of experience in the field of International Education. As a child, she had the opportunity to study and grow up in different states across India, as well as the chance to travel to various countries like Turkey, South Africa, Morocco, and the United States for work. This global exposure helped Madhuri gain a deeper knowledge and understanding about the true value of studying abroad and importance of cross-cultural experiences.

Working with study abroad students and teaching Intercultural Communication Leadership has helped Madhuri to be adaptable, inclusive, and accepting towards different people, cultures, and communities. The passion to work with different people has led her to volunteer for the Global Leadership League, The Forum for Education Abroad, and AAC&U during lockdown.

When Madhuri is not working she is busy blogging, running, cycling, singing, gardening, cooking and trekking! We are fortunate she has taken the time to volunteer with us here at the League and to share her story.

"No disability or dictionary out there, is capable of clearly defining who we are as a person."

Robert M Hensel

“It’s Never Late to Learn.” I always admire this quote as it keeps me hungry to learn new things in life. Learning can be any information or can be about yourself. My twin sister and I were born with a congenital facial paralysis. It is a rare congenital neurological condition which primarily affects the muscles that controls the facial expressions and complete eye closure. It is considered as one of the Rare Disorders (RD) - basically there are more than 7,000 Rare Disorders observed in the world.  Recently, I found out that this condition nearly matches with a Rare Disorder called Moebius Syndrome (MS), but we do not fall under that as we do not meet all the criteria which defines the Syndrome, thus it is still considered as congenital facial paralysis. 

Out of curiosity, I contacted Dr. Kathleen Boghart, who is a successful academic and TEDx Speaker, Health Psychology professor, and part of the Moebius Syndrome Foundation (MSF), and Ms. Vicki McCarrell, Co-founder of the MSF, to learn about the syndrome and the foundation. They welcomed me into the MSF family and accepted my interest to volunteer with them in the future. I want to create awareness and provide, above all, emotional and psychological support to the affected individuals and families in India and abroad. I was surprised to learn that there are 4-5 people excluding us in India who are affected with this particular type of Rare Disorders.

What does MSF do ?

The mission of the Moebius Syndrome Foundation is to provide information and support to individuals with Moebius syndrome and their families, promote greater awareness and understanding of Moebius syndrome, and to advocate for scientific research to advance the diagnosis and treatment of Moebius syndrome and its associated conditions.

Fortunately, my sister and I were blessed to born into a family where we were surrounded with loving and caring parents, siblings, family, and friends who never let us feel that we were different from others. This is one of the reasons I never took an interest to learn about this Rare Disorder in the past. Despite this abundant love, we did face a lot of issues in our childhood, in school, and college. Typically, strangers and people meeting us for the first time, do not know how to react or do not know what a Rare Disorder is. Always that strange look given by some people hurts because they are uneducated and it is impossible to explain to them what it is and they are surprised when they learn this type of Rare Disorder exists.  

Some show empathy and others sympathy. My sister and I have also faced major difficulty during our careers and marriage. Coming from an Indian society where most of the marriages were/are arranged, my parents faced a lot of challenges to find us a life partner who can understand about this Rare Disorder and can accept us the way we are. Many rejected and some were ready to marry only if we agreed to pay a huge dowry, for which I never agreed. 

My father, who was my pillar of strength and my mentor, always motivated us to be financially independent and that has made me a strong independent woman who is not ready to give up her choices and freedom just for the sake of marriage. My sister got married and has two beautiful daughters who are the proof that this Rare Disorder is not genetic and that it may or may not pass to the next generation. I have little knowledge about scientific research in this area, but will provide emotional support to the needy as I can totally understand and relate to the pain they have gone through or are undergoing. 

I am not sure if any serious research or diagnosis is done in India, or maybe I am not aware of it.  After learning about MSF in USA, I am happy to be part of their research & want to work closely with them to spread awareness and to support people by sharing my experiences.

I want to advocate for individuals with any kind of disability especially women in India who are shy and afraid to stand up for themselves or are worried about being defamed. Raise your voice, love yourself and stand for yourself, the rest will fall in place. 

Believe in yourself and stay safe, 

Madhuri

Global Leadership League members, what are you passionate about? What have you found an unexpected community in your life? Share with us on our social media!

The mission of the Global Leadership League is to ignite change across the global education field by empowering, connecting, and training leaders. We invite you to reach out to us here or learn more about becoming a member.