Your Story Is Rare – It’s Powerful, Too
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Your Story Is Rare – It’s Powerful, Too
A rare disease diagnosis comes with no instructions, no how-to book and certainly no guidance on how to manage life in a world that has suddenly been turned upside down. The greatest advice on rare disease comes from those who are living with it: The patients and caregivers who know, first-hand, what it means to…
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Duchenne Diagnosis and Timely Care in Saudi Arabia – #DuchenneCan
“We were determined to support physicians who are at the forefront of Duchenne diagnosis and fulfill our mission of giving families the special moments they deserve.” – Edouard and Patricio, PTC MEA Team Despite being the 12th largest country in the world, Saudi Arabia lacks experienced physicians and medical centers that specialize in the diagnosis…
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Making Education Possible in Ukraine – #DuchenneCan
Marharyta lives in Ukraine with her 13-year-old son, Danya, who was diagnosed with Duchenne muscular dystrophy seven years ago. But she’s not your typical caregiver! Over the past few years, Marharyta has worked tirelessly to improve her son’s life and raise awareness of Duchenne in her local community. Marharyta understood the key role that education…
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Why MLK Day Matters at Work
On Monday January 18, 2021, PTC – along with many other inclusive organizations – will celebrate the legacy of the honorable Dr. Martin Luther King, Jr. This is a day when we celebrate how the contributions of Dr. King evolved the growth of minority opportunities within organizations and communities regardless of race, gender or religion.…
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Breaking Down Physical and Digital Barriers – #DuchenneCan
Björn, from Sweden, doesn’t let his Duchenne muscular dystrophy diagnosis stop him from making a difference and empowering others like him. “Accessibility goes beyond a ramp or a lift. I’m proud to be contributing to decision-making to improve accessibility for those living with disabilities in my community. I hope to empower and inspire others in…
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Accelerating DMD Diagnosis in Russia
In 2019, PTC initiated a diagnostic program in Russia with the objective of improving and accelerating access to genetic testing for patients with Duchenne Muscular Dystrophy (DMD). Due to the geographic and population largeness of Russia, differences in health care standards and funding across the vastness of the country limit access to vital diagnostic testing,…
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Planting Acorns to Grow a Mighty Forest – Developing Future Scientists
PTC is about to finish our fourth year in a special partnership with New Jersey’s Passaic Academy for Science and Engineering – part of our corporate Community Outreach program. This is a school serving a student population with limited means, but exceptional gifts. We recently provided a financial contribution to Students 2 Science, affording Passaic…
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Passing the Baton in a Multiyear Race – Beating Huntington’s Disease
When the time came for biologist Anu Bhattacharyya, Ph.D. to hand off leadership duties for the PTC Huntington’s disease (HD) research project to clinical project leader Brian Beers, she felt like she was passing the baton in a relay race. As with such a race, your heart continues to beat furiously for a few moments…
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Asked and Answered: People with Disabilities Speak Up
“It is hard for me to give hugs as I cannot raise my arms. However, my mom picks them up and hugs me.” – Teenager with Duchenne muscular dystrophy In 1992, the United Nations designated December 3rd as International Day of Disabled Persons (also known as International Day of Persons with Disabilities, International Day of…
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PTC – Always Investing in Our People
PTC was founded by a medical school professor who understands and encourages continuous lifetime learning. I admire this approach. Seven years ago, I was new to PTC and understood that funds were tight. We had limited cash on hand, and no approved products. We believed two things at that time: PTC was on track for…