India

USH Ambassadors for India - Nilam, Geri, and Saurabh

We are fortunate to have 3 individuals dedicated to growing the Usher community in India. Meet Nilam - mom of 2 children with Usher 3B. Nilam lives in the United States and is of Indian heritage; Geri - a mom whose son has Usher 2A. Geri lives in India; and Saurabh - an adult living with Usher 2A in India.

You may also contact the ambassadors individually or as a group at: info.india@usher-syndrome.org 

Meet Your Ambassador - Nilam

Video Transcript:

Image: Nilam Agrawal, a woman with light brown skin, long, dark brown hair and dark brown eyes, smiles at camera from a room inside her home. She is wearing a sleeveless blue top.

Transcript: Nilam Hi everyone. My name is Nilam Agrawal. My American Sign Language name is "N" near the eye. I'm one of the two ambassadors in the state of Texas for Usher Syndrome Coalition. I'm volunteering here along with Valerie Nordstrom. I'm also the international ambassador for India.I live in Texas with my husband and our 2 kids, 14-year-old son Arian, and 10-year-old daughter Krishangi. And I have a Master's in business. I'm also one of the board members for the National Family Association for Deaf-Blind. Both my kids have been diagnosed with Usher syndrome type 3B, and even though Usher syndrome is the leading genetic cause for combined deafness and blindness, we had a long, tedious journey of over 10 years to get a diagnosis for our kids. We even had a false diagnosis to start with and now with unique life experiences, both my kids have motivated me to come and volunteer with the Usher Syndrome Coalition because I firmly believe in your cause to promote not only advocacy but to promote but also to promote research and to find a cure. I'll give you a quick overview of our work and I'll start with India. In India, we have been able to make very good connections. We have been able to connect with the local chapters of Perkins School for the Blind and Helen Keller National Center. We have connected with Sense India, and Shankira Eye Foundation.  Along with that, we have connected with a few geneticists, and scientists at research facilities.  We have a patient registry of about 13 patients and we are picking up on that and we have a lot of plans for India along with bringing local resources we want to start Family to Family Connect calls. With regards to Texas, Valerie and I have been working on our introductory letter and will start connecting with families in Texas and bringing them local resources. It is really nice to talk with you all and if you have any questions, if you need any help, feel free to either connect with me or any of our wonderful ambassadors. We are all here because we are of local families. Thank you!

Contact Nilam at: ambassador.india@usher-syndrome.org

Meet Your Ambassador - Geri

Namaste y'all!  My name is Geraldine "Geri" Rosario. I was born and raised in the Philippines, spent my young adult life in the U.S. (Ohio, California, Massachusetts, Connecticut, Texas, Arizona, North Carolina), and now I live in Mumbai India. I am married to a wonderful Indian guy. 

By profession, I am a statistician and computer scientist (MSc Statistics and Ph.D. Candidate in Computer Science), but currently, I enjoy being a full-time mom.

I have 10-year-old twins, a boy and a girl. My son has USH2A, while my daughter does not. My introduction to Usher syndrome came in 2019 when my son, then 7 years old, was diagnosed with USH2A via genetic testing. What? Rare condition? Can I find others? Luckily that year, I joined the Usher Syndrome Coalition and found a tremendous amount of support and valuable tips from the USH Blue Book Forum and website. My family was not alone.

One of my first questions in the Forum was “are there members in Mumbai or India?” So when Nilam started the Usher Syndrome India group, I was so happy! Talking to people who know Usher (parents or individuals) is so rewarding! I look forward to the monthly USH India calls. 

It is estimated that 75,000+ people in India have Usher syndrome. But finding people with Usher is challenging. The focus of many deafblind organizations here is education, support, and empowerment …. not the identification of the underlying DB cause. Many people cannot afford genetic testing

In January 2022, I became one of the ambassadors of the Coalition for India. I am eager to help find other Usher folks, to encourage them to register in the USH Trust so India can be on the radar screen for clinical trials and in the research for a cure, to show other parents of Usher kids that they are not alone, to connect and help other deafblind organizations improve the support system for deafblind folks in India, to help increase awareness about Usher being an inherited condition (many Indians prefer to marry within their community, which increases the chance of marriage between 2 carriers of the same Usher gene), to encourage research for treatments and assistive tools within India itself, etc.

There is a lot of work to be done. But even baby steps are better than nothing! 

Contact Geri at ambassador.india2@usher-syndrome.org

Meet your Ambassador - Saurabh (coming soon!)

Resources for India