News, talk and articles
The latest news from PTC
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UK Caregiver of the Year Campaigns for Disability and Rare Disease Rights
Shelley received the Caregiver of the Year 2022 award from the charity Muscular Dystrophy UK. -
DMD: continuum of disease and importance of continuation of care
This episode is dedicated to discussing Duchenne Muscular Dystrophy (DMD) continuum of disease and importance of continuation of care in Duchenne Muscular Dystrophy (DMD). Hear from our expert guest speaker, Dr. Mayer from Children’s Hospital of Philadelphia (CHOP) about the recommended DMD standard of care guidelines with regards to ongoing patient management and care. Return… -
Feriel Inspires Other Women with Duchenne
Feriel's Duchenne diagnosis hasn’t stopped her from having a positive outlook. -
Philip’s Journey to Gold
Philip is the first person ever with Duchenne to win a gold medal in any event at the Paralympics. -
An Aspiring Screenwriter Living with Duchenne
Lizanne wants to increase recognition for disabled people in the acting and film industries. -
Gabriela Inspires Children to Embrace Their Differences
Meet Gabriela, a young and talented author of a children’s book, "Timothy’s Magic Wheelchair". -
Dancing for Duchenne Brings Joy to the Community
Hulda created Dancing for Duchenne to encourage positivity through hard times. -
Transition to Adult Care in DMD, the Social Perspective
As more and more boys and young men with DMD are transitioning into adulthood, there is an increasing emphasis on quality of life and psychosocial management. In this episode, we are joined by Sarah Stoney, licensed social worker from Children’s Hospital of Philadelphia for a discussion about considerations and strategies for social aspects of care.… -
Laura Channels Challenges Into Positivity
Laura helps others navigate life with Duchenne and live every day like the best day ever. -
Living with AADC Deficiency – Meet the Heger Family
Kelly Heger went back to school and trained as a nurse after her daughter Jillian was diagnosed with AADC deficiency (AADCd), a rare fatal pediatric disorder, over 26 years ago. Kelly was determined to understand the complicated medical language used by her daughter’s doctors and to play a pivotal role in the round-the-clock medical care…