USH Ambassadors for India - Geri, Saurabh, and Divya

We are fortunate to have 3 individuals dedicated to growing the Usher community in India. Geri - a mom whose son has Usher 2A. Saurabh - an adult living with Usher 2A; and Divya, a woman living with USH3B who lives in the United States but is of Indian heritage.

You may contact the ambassadors individually or as a group at: info.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)

Meet Your Ambassador - Divya

My name is Divya Goel and I am one of three USH Ambassadors representing India. 

I am DeafBlind with a rare type of Usher syndrome called Usher 3B or HARS syndrome. I was born in Ontario, Canada, to hearing/sighted South Asian parents who immigrated from India. I spent my early years in Canada and then my family moved to Florida in the United States. My passion in life is to advocate for equality, access to education, and related topics. I wish to help uniquely-abled persons to become more independent! This passion has brought me to countries like Canada, India, Nepal, and Uganda to fulfill this dream.
My preferred language is American Sign Language. I hope to learn more Protactile Language, International Sign Language, Indian Sign Language, and Haptics. My hobbies are knitting, crafts, walking/playing with my dog, and socializing.
Feel free to contact me at ambassador.india@usher-syndrome.org 

Resources for India

  • The USH Trust is the largest international contact database of individuals with Usher syndrome. Created and maintained by the Usher Syndrome Coalition, it is our most powerful tool to connect and inform individuals living with Usher worldwide. The USH Trust allows us to get to know and serve the community better, and to do what we do best: identify, build, support, and connect the community, both within the Usher community and with the research community. We do this via email, telephone, videophone, social media, webinars, local social events, our USH Connections Conference, and the many resources on our website. Come, join us!

  • Individuals with Usher syndrome who are passionate about research have a new data collection program to join. The Usher Syndrome Data Collection Program, or USH DCP, is powered by RARE-X, a program of Global Genes - a nonprofit dedicated to accelerating research in the rare disease community. By entering your health information into this secure platform, you will become part of a global database of de-identified information available to researchers worldwide. That means that only you can see your data. Only you can change your data. Your personal information (name, email address) will not be shared without your permission. As the DCP grows, more researchers will become aware of Usher syndrome. This can lead to the development of clinical trials, new treatments, and new therapies. YOU hold the key to unlocking future research discoveries.

  • Information about the Coalition and the USH community in India.

  • Enhance your efficiency on computers. Attend career awareness workshops. Sign up for digital/computer literacy programs. Get employability training and employment.

  • 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!’

  • Several studies indicate that a large proportion of both syndromic and nonsyndromic forms of deafness in the racially diverse Indian and Pakistani populations are caused by mutations in just a few genes. In these countries, there is a strong cultural preference for consanguineous marriage and an associated relatively high prevalence of genetic disorders.

  • MedGenome Labs Ltd
    3rd Floor, Narayana Nethralaya Bldg, Narayana Health City,
    #258/A, Bommasandra, Hosur Road, Bangalore - 560099
    Tel: +91 (0)80 6715 4989 / 990
    Test requested: Usher syndrome panel genes

  • 2nd NCDB 2022! (National Conference of The Deaf-Blind) from 4th February to 6th February 2022. The main theme of this conference is 'Wellness through Independent Living' and topics are Health, Finance and jobs. The first two days will focus on conference theme. The third day of the conference is for entertainment. The conference is open to deaf-blind, deaf-low vision, deaf and non-disabled people. Deaf or hearing interpreter should come with the participant who is deaf-blind or deaf-low vision. SEDB will take care of the travel expenses of registered deaf-blind/deaf-low vision participants along with their hearing interpreters provided they travel by 3rd AC/sleeper class and within the scope of their railway concession certificate.
    Please register for free using this link: https://forms.gle/u1BtwhZ6UUL2jRzk7

  • Research article with data about the Usher community in India