People with Special Needs CAN Travel – #DuchenneCan
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People with Special Needs CAN Travel – #DuchenneCan
Sebastien is the founder of Handiscover – an online hub for booking accessible travel accommodations. He’s passionate about travel and has lived all over the world. He was determined that he’d keep his travel habits once he had children. However, at four years-old, his son Teo was diagnosed with Duchenne muscular dystrophy, and Sebastien soon…
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Starting a Movement with a Single Question
After George Floyd was murdered, one of my Black colleagues pointedly asked me, “Have you ever worried about being pulled over by a police officer and shot?” I was stunned. Silent. Numb. I had, in fact, never worried about this. And yet, my colleague and friend has lived with this burden of fear – a…
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Inspiring “People of Determination” – #DuchenneCan
In the United Arab Emirates (UAE), people with special needs and disabilities are considered ”people of determination.” This designation is used in recognition of their achievements in different fields. Abdulla – who is 37 years old and living with Duchenne in the UAE – is one such incredible person who demonstrates determination in all parts…
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AADC Deficiency Awareness Day 2021
Watch the October 22, 2021 Facebook LIVE Broadcast of AADC Deficiency Awareness Day In 2020, the AADC Family Network, in collaboration with PTC Therapeutics, MassBio and Boston Children’s Hospital, observed the first AADC Deficiency Awareness Day. AADC stands for aromatic L-amino decarboxylase – and AADC deficiency is a rare disease that affects the brain and…
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Play the Virtual Escape Game: Mission Duchenne™
PTC presents an interactive, family-friendly event for escape game enthusiasts of all ages. Mission Duchenne™: A Virtual Escape game is intended to be a fun and empowering virtual game experience for families. The game content includes information about Duchenne muscular dystrophy. The game can be played as many times as you like. We invite parents…
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Hope Is a Lifeline – A PKU Story
Heidi Maxfield is mother to a son with phenylketonuria (PKU) and sits on the Board of Directors at Intermountain PKU & Allied Disorders (IPAD). The following article was contributed to the PTC Newsroom to help spread awareness about PKU. Reach Heidi on Facebook or Instagram @maxfam. Do you have a rare disease story to share?…
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Ashley Clarke: Remember the Caregivers
Ashley Clarke is an HD caregiver from Northern Ireland. She has served as board member for the Huntington’s Disease Association of Northern Ireland (HDANI) and operates the #Imnotdrunk lifestyle blog for members of the HD community. Follow her on Instagram at @imnotdrunklifestyleblog, and Facebook @imnotdrunkblog. Do you have a rare disease story to share? Contact…
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B.J. Viau: Turning Hope into Help for the Huntington’s Disease Community
B.J. Viau is a lifelong Huntington’s disease (HD) advocate and has served as Board Chairman of the Huntington’s Disease Youth Organization (HDYO). The following article was contributed to the PTC Newsroom to help spread awareness about HD. Follow him on Twitter @BJsView. Do you have a rare disease story to share? Contact our news team…
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Amazon Duchenne Community CAN Count on Leandro – #DuchenneCan
At PTC, we’re passionate about supporting those living with rare diseases, even when they live in the most inaccessible parts of the world. Leandro, a PTC colleague in Brazil, plays a key role in educating physicians in remote areas along the Amazon River. He shares information about Duchenne muscular dystrophy (DMD), and has helped make…
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Lessons Learned from My Sibling with Duchenne – #DuchenneCan
Emily is a contributing writer. Her brother Wil has Duchenne muscular dystrophy. He was always noticed on the field when growing up; that is, for all the “wrong” reasons. Other kids could outrun him, outjump him, and outperform him. And yet, despite his physical weaknesses, he was also noticed for the “right” reasons. His heart…