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For the last two years, global biopharmaceutical company Bristol-Myers Squibb (BMS) has organized a day when all of their drug development project teams from across the world would have the opportunity to take some time to listen to patients and their caregivers. Wednesday was that day.

The walls of their Princeton, NJ offices are covered in posters, photographs of individuals, and the words 'We work for Robert' (for example) followed by his diagnosis. It is a constant reminder that people - patients - are who they work for, the reason they come to work, the only reason.

This year's focus was Duchenne, progressive supranuclear palsy (PSP), and indopathic pulmonary fibrosis.

Tayjus Surampudi and his mom discussed life with Duchenne. Tayjus said he noticed no difference initially. He was a kid, just living his life. His mom, on the other hand, noticed everything, worried about everything. Tayjus said that kids accepted him easily, but he found adults had trouble...more trouble than kids. He thinks this is still the case. Tayjus talked about being a student at Harvard, how his mom was planning on spending the first semester with him to ensure 'things' were all organized. After 30 days, Tayjus sent her home. He was confident he could manage. He could be independent. He was ready.

A woman named Eileen spoke about PSP, a rare adult onset disease, often misdiagnosed as Parkinson's and similar in many ways to ALS in terms of functional loss and progression. She talked about the diagnostic odyssey, her husband's diagnosis followed by 7 years of caregiving, seeking answers and hope.

Then a woman named Michelle talked about her husband's diagnosis of idiopathic pulmonary fibrosis, another diagnostic odyssey. After the initial relief that it was not lung cancer, they soon learned the reality, that it was worse and no treatments were available other than oxygen. And ultimately, it is fatal.

Together we discussed a range of issues from living with, to clinical trials, and the importance of including the patient's (caregiver) voice throughout the drug development process.

My role was to discuss advocacy - the fact that following a diagnosis, the patient or his/her caregiver becomes an advocate by default, educating family, community, primary healthcare - figuring out what to do, where to find support, ask questions and where to go for care, trials, treatments. Where to turn to to find help.

It was a good day for Duchenne. BMS is committed. BMS has a possibility for our toolbox of hope. BMS wants to listen, to learn, and to serve. They work for us!

And I will look forward to the day when I enter their offices and I see a few photos of our sons with the tag line 'We work for Tayjus, for Michael, for Anthony, etc.'

Fingers crossed.

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Comment by Tina Riley on January 22, 2015 at 2:54pm

Huge kudos to Tayjus Surampudi and his mom for all the work they both had to have done for him to be prepared for Harvard. That's a rare accomplishment for any young person, and, knowing what life with Duchenne is like, I am completely impressed with what they have done together!

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