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Jay Trivedi
Massachusetts, USA

Jay lives with a rare disability called Congenital Central Hypoventilation Syndrome (CCHS) which was diagnosed in 2000 patients worldwide.

He is everyday overcoming challenges "One breath at the time".

"My name is Jay I am a 30 year old individual diagnosed at birth with an invisible disability known as Congenital Central Hypoventilation Syndrome (CCHS). This disability is very rare and it involves a genetic mutation impacting the nervous system. Patients diagnosed require mechanical ventilation during sleep. However, some patients require mechanical ventilation 24/7. Each patient’s diagnosis is different. Some other symptoms of the diagnosis can include poor eyesight, poor temperature controls, and congnitive delays in young children. Most patients with CCHS can live full and healthy lives. They can achieve an education, build a successful career in the job market, and have families. Although there is no cure for CCHS and very little research is being done, CCHS Family Network and The CCHS Foundation are working together to continue raising funds and encourage friends/family to donate so the money can help go towards research and education."

 

Jay says that being diagnosed with CCHS has never stopped him from achieving his goals and doing what makes him happy. He not only finished a bachelor's degree in Business Administration but also is doing a lot for the disable community. Jay provides tutoring services for college students with various disabilities. He also is an advocate for CCHS Foundation and Diversability Leadership Collective (DLC) - a Disability organization. 

"I would like to let others with disabilities know that if you are confident, and you can anything that you put your heart and soul into. You deserve an opportunity to achieve an education and have successful career. Finally, you have each and every right to fight for your medical and equipment needs and disability assistance"

"I am associated with charity organization called “The CCHS Foundation”. The annual fund is what keeps our organization thriving year-round. With your support we can continue to be an advocate for our community in the medical world, support families and patients, and raise money towards better treatment for those we love. Also, using your Amazon account, you can shop on AmazonSmile and .05% of each purchase goes towards CCHS Family Network and CCHS Foundation"