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USH Ambassador for India

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

Resources for India

  • Created to bring awareness to Usher syndrome, advocate for the unique needs of the Usher community in India, and share information and resources with families and individuals living with Usher syndrome in India. Our message to you is that ‘You are not alone!’

  • Nilam discusses her journey as a parent of children with Usher syndrome and her passion to improve education for all DeafBlind children.

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