spinalmuscularatrophy

“When I could no longer pursue the dream of being an artist because my hands became too weak to hold a pencil, I needed to dream, a new dream, and I realized that that is, in itself, a gift to be able to sort of pivot and change direction and ask yourself, what else? That I still have my spirit. I still have my mind and I still have a deep desire and yearning for an extraordinary life. And I still want to be of service to humanity and the world.” 

Eddie Ndopu is an award-winning disability activist from South Africa and one of 17 United Nations advocates for the Sustainable Development Goals. Diagnosed with spinal muscular atrophy, a rare degenerative condition, and given only five years to live, he is now 30 and has dedicated his life to ensure that the voices of those at greatest risk of being left behind are being amplified and heard worldwide. 

During this inspiring episode, Eddie recounts the difficult daily challenges he has faced throughout his life, especially during the COVID-19 pandemic, and how his mother, “the wind beneath his sails”, sacrificed so much to make his life possible. He also talks about his big dream: to be the first physically disabled person in outer space and to address the United Nations from there. 

Eddie’s heartwarming story and courageous spirit are proof of his belief that everybody should be afforded the opportunity to dream and become everything that their imagination desires. 

Welcome to Episode 46 of the Asian American History 101 podcast! Here it is, the special episode we recorded for the Joy Ruckus Club 4 Festival’s podcast stage. We begin with giving a quick history of our podcast including our favorite episode, but we also talk about some well-known popular music bands that had Asian American Leads. Our main segment is a very special interview of Tara Hahn, the lead singer of the ska band, Half Past Two. She takes time to talk to us about music, Half Past Two, and Spinal Muscular Atrophy. SMA Awareness month is in August, and HP2’s song Shine is a beautiful tribute to Tara’s daughter Neely who has SMA. She also shares a few people that inspire her,  including Laughing at My Nightmare by Shane Burcaw and Disability Visibility Project by Alice Wong. We close the episode by talking about some Asian and Asian American indie musicians that we really enjoy. To learn more, please visit our site at https://asianamericanhistory101.libsyn.com or https://linktr.ee/AAHistory101 for social media. If you have any questions, comments or suggestions, email us at info@1882media.com.

Segments

• 0:26 Opening and Talking About Our Own Podcast
• 10:51 Well Known Bands with Asian American Leads 
• 12:22 Talking Ska and Spinal Muscular Atrophy Awareness with Tara Hahn
• 49:48 Asian and Asian American Indie Musicians We Listen To

A year and a half ago, a family received a devastating diagnosis in the midst of the onset of the COVID-19 pandemic. Today, that mother is sharing her son’s experience with (SMA), a rare, devastating genetic disease that is also a leading genetic cause of infant death, and how early diagnosis and treatment transformed his life. My guests are Dr. Sandy Reyna, Vice President of Global Medical Affairs, Head-Therapeutic Area at Novartis Gene Therapies and Kathryn McBride, parent of child with SMA. We talk about the signs of SMA, the importance of newborn screening and an early diagnosis, and new treatment options.

A year and a half ago, a family received a devastating diagnosis in the midst of the onset of the COVID-19 pandemic. Today, that mother is sharing her son’s experience with (SMA), a rare, devastating genetic disease that is also a leading genetic cause of infant death, and how early diagnosis and treatment transformed his life. My guests are Dr. Sandy Reyna, Vice President of Global Medical Affairs, Head-Therapeutic Area at Novartis Gene Therapies and Kathryn McBride, parent of child with SMA. We talk about the signs of SMA, the importance of newborn screening and an early diagnosis, and new treatment options.

In this episode we chat with Alice Wong, disability activist, media producer, and a consultant. She is the founder and Project Coordinator of the Disability Visibility Project, a project collecting oral histories of people with disabilities in the United States that is being run in coordination with StoryCorps. The Disability Visibility Project was created on the 25th anniversary of the Americans with Disabilities Act of 1990. As of 2018, the project had collected approximately 140 oral histories.

Her new project is an anthology titled, Disability Visibility First Person Stories from the 21st Century. Joining Alice in part 2 of this episode is Dr. Diana Cejas, a physician with a disability and one of the authors in Disability Visibility. Dr. Cejas shares her journey to becoming a person with a disability and how her dual identities as a patient and a physician inform her work with patients. Her essay is titled, Taking charge of my story as a cancer patient at the hospital where I work.

Key Words: BIPOC, Physical Disability, Spinal Muscular Atrophy, Activist

Remdesivir is submitted; New opioid approved by FDA; A new Spinal Muscular Atrophy treatment;  A sublingual epinephrine treatment; and the latest on Biogen’s investigational Alzheimer disease treatment.

Actin isoforms divide their responsibilities in motoneurons

Actin dynamics are crucial for axon growth and branching, but most studies have only focused on the role of β-actin. Moradi et al. reveal that α-, β-, and γ-actin have different functions in motoneuron axons; locally translated α-actin forms stable actin filaments that promote the formation of axonal branches, whereas β-actin regulates growth cone dynamics. This biosights episode presents the paper by Moradi et al. from the March 6th, 2017, issue of The Journal of Cell Biology and includes an interview with the paper's senior author, Michael Sendtner (University Hospital Würzburg, Würzburg, Germany). Produced by Caitlin Sedwick and Ben Short. See the associated paper in JCB for details on the funding provided to support this original research.

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