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Dennis OConnor

The Power of Digital Audio Storytelling: From Podcasts to Voice Assistants - Journalism... - 0 views

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    "Welcome to the Knight Center's new MOOC, "The Power of Digital Audio Storytelling: From podcasts to voice assistants." During this four-week course, you'll gain an understanding of why one of the oldest storytelling forms is having a renaissance thanks to technological changes. We'll explore the fundamentals of great audio storytelling, podcasting, voice assistants, how to get audio to your audiences, and more."
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    I've taken a course on podcasting from the knight center. It was excellent. These are 'on demand' courses. I usually enter, scan the resources and sample lectures. I'm signing up for this one because audio storytelling is becoming an important part of our mission.
Dennis OConnor

Katie Teague on Vimeo - 0 views

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    "Katie Teague is an independent documentary filmmaker and multi-media mystic working in the realm of transformational storytelling."
Dennis OConnor

Health Story Collaborative - 0 views

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    "You are not alone. Navigating illness can be isolating, but it doesn't have to be. At Health Story Collaborative, we believe in story sharing for health. We are patient-centered, research-based, and committed to the therapeutic power of storytelling. We strive to create a space where story sharing is valued and honored within the healthcare system. Explore the site, listen to stories and consider crafting and sharing your own. "
Dennis OConnor

LymeDisease.org - Advocating nationally for quality accessible healthcare for patients ... - 0 views

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    We were founded in 1989 as a small grass-roots organization in Ukiah, California. Today, we are one of the most trusted sources of information by patients - annually reaching over 3.5 million unique visitors on our website. LymeDisease.org is grounded in the principles of patient empowerment, participation, and self-determination. We fight to make the patient voice stronger to support science-based advocacy bring about legislative change, and create a future where Lyme patients can receive the treatments they need to get well. LymeDisease.org empowers individual patients by educating them, amplifying their collective voice, and providing research tools like our published big data surveys and the MyLymeData patient registry. We believe that there is strength in numbers.
Dennis OConnor

EB Research Partnership - EB Research Partnership - 0 views

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    "BUILDING A FASTER CURE TO EB. By fixing a single mutation, we can change the lives of many. Join us on our venture into cures, your investment will be transformational." Epidermolysis Bullosa is a family of rare genetic disorders that affect the body's largest organ: the skin. Individuals with EB lack critical proteins that bind the skin's two layers together. Without these proteins, the skin tears apart, blisters, and shears off leading to severe pain, disfigurement, and wounds that may never heal.
Dennis OConnor

What Lyme Disease and Its Aftermath Taught Me About Self-Advocacy - 1 views

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    4 Lessons in Self-Advocacy - Sometimes you have to save your own life.
Dennis OConnor

Milasen: The drug that went from idea to injection in 10 months - 0 views

  • itting in freezer at Boston Children’s Hospital is a drug you won’t find anywhere else. It’s called milasen, and the 18 g that the hospital custom-ordered nearly 2 years ago should last for decades. That’s because milasen was designed to treat a single patient—a now 8-year-old girl named Mila Makovec. Milasen was built on decades of work on a class of drugs called antisense oligonucleotides. But after Boston Children’s Hospital scientist Timothy Yu diagnosed Mila with a never-before-seen genetic mutation, he took only 10 months to go from idea to injection. It’s a record-shattering sprint in the typical drug-development marathon, and an unprecedented degree of personalization for a chemical drug.
  • While the story of milasen could be seen as a template for other highly personalized drugs—what the field has come to call n-of-1 therapies—it also raises questions: Who should get these treatments? How will they be funded? And how will the US Food and Drug Administration regulate these projects?
  • Yu was intrigued. He reached out and offered to do whole-genome sequencing on Mila, her parents, and her younger brother.
  • ...4 more annotations...
  • Mila’s mom, Julia Vitarello, had started a group called Mila’s Miracle Foundation to raise money to develop a gene therapy for her daughter.
  • Julia Vitarello, Mila's mother In March, Yu’s team found that a piece of DNA called a retrotransposon—the genetic remnants of viruses scattered throughout all of our genomes—had spontaneously inserted itself in the middle of a noncoding region of Mila’s CLN7 gene.
  • Black told Yu to renegotiate with the FDA. The 3-month safety study in rats, followed by another couple months to report the data, would take too long. After a letter from Vitarello outlining Mila’s decline, the FDA made a concession: Mila could get the drug after just 1 month of testing, so long as the rat studies continued to 3 months to understand any long-term toxicity.
  • Today, Mila continues to get injections of her drug approximately every 2 months. She used to have up to 30 seizures a day, each lasting more than a minute. Now, she only has a few a day, and they don’t last long,
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    "Sitting in freezer at Boston Children's Hospital is a drug you won't find anywhere else. It's called milasen, and the 18 g that the hospital custom-ordered nearly 2 years ago should last for decades. That's because milasen was designed to treat a single patient-a now 8-year-old girl named Mila Makovec. Milasen was built on decades of work on a class of drugs called antisense oligonucleotides. But after Boston Children's Hospital scientist Timothy Yu diagnosed Mila with a never-before-seen genetic mutation, he took only 10 months to go from idea to injection. It's a record-shattering sprint in the typical drug-development marathon, and an unprecedented degree of personalization for a chemical drug."
Dennis OConnor

Team | reflect-copy - 1 views

  • HEIDI RATAJ
  • THERESA HOILES
  • PRODUCER, DIRECTOR & SPEAKE
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  • PRODUCER & WRITER
  • What’s more important, quality of life or quantity?”
  • Theresa learned early that age is not an excuse to slow down.
  • Through storytelling, she wants to break the stereotypes associated with aging.
  • This series convinced Heidi that life should be measured in quality not quantity
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    "Gray Matters, the new podcast series, will continue our mission to discuss how we can all age successfully. Heidi Rataj, MA Producer, Gerontologist & Entrepreneur re'flect, the documentary series has aired nationally on over 50 PBS stations in over 40 cities and is spreading the positive aging conversation around the US. "
Dennis OConnor

Story & AIHM - Is Your Story Making You Sick? - 0 views

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    "Is Your Story Making You Sick? has screened at top conferences and mental health organizations across the country-catalyzing important conversations about this innovative and effective approach to healing. From addiction treatment to trauma-informed communities - leading healthcare organizations and beyond - many have found our film to be a powerful tool to share a message of recovery, healing, and hope."
Dennis OConnor

Chasing My Cure: Dr. David Fajgenbaum Lessons from his Rare Disease and On Finding Cure... - 0 views

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    "David Fajgenbaum, MD, MBA, MSc, is the co-founder and Executive Director of the Castleman Disease Collaborative Network (CDCN) and one of the youngest individuals to be appointed to the faculty at Penn Medicine, where he is an Assistant Professor of Medicine in Translational Medicine & Human Genetics, Founding Director of the Center for Study & Treatment of Castleman & inflammatory Lymphadenopathies (CSTL). An NIH-funded physician-scientist, he has dedicated his life to discovering new treatments and cures for deadly disorders like idiopathic multicentric Castleman disease (iMCD), which he was diagnosed with during medical school. As common as ALS and more deadly than lymphoma, iMCD involves the immune system attacking and shutting down the body's vital organs such as the liver, kidneys, bone marrow, and heart. After spending months hospitalized in critical condition, having his last rites read, and having four deadly relapses, he is now in his longest remission ever thanks to a treatment that he identified in the lab."
Dennis OConnor

With Lyme disease on the rise, why do so many chronic sufferers struggle to convince do... - 1 views

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    "New York-based writer Porochista Khakpour has spent 12 years seeking answers to a variety of strange physical symptoms that have baffled doctors, from convulsions and tremors that feel like a panic attack, to debilitating fatigue. She's sought midnight answers for strange fevers and painful gastritis, spent hundreds of sleepless nights fighting with drug-resistant insomnia, experienced rapid weight loss or gains of up to 40 pounds without any changes in diet, and most frightening to her, difficulty swallowing."
Dennis OConnor

Is Your Story Making You Sick? - 1 views

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    "shows how people can rewrite the toxic stories they tell themselves. The film reveals how individuals battling addiction, trauma, and depression can change their stories and transcend their pain."
Dennis OConnor

Gmail - Confirmation of Your Story Submission.pdf - 0 views

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    Christina P. Kantzavelos, LCSW #73271, MSW, MLIS *She/Her/Ella Licensed Psychotherapist and Writer (619) 797-6383 Free 15-min Consultation www.beginwithintoday.com hello@beginwithintoday.com Follow us on Instagram @beginwithtoday My name is Christina Kantzavelos, and I am a licensed psychotherapist and coach who specializes in treating clients with chronic illness @beginwithintoday, and the author of the Begin Within Journal. I'm also a gluten-free food, travel and health-conscious writer @buenqamino. Lyme Disease changed the entire trajectory of my life. Although, I was likely infected in middle school when we first noticed the cat scratch stretch marks, and strange symptoms (fatigue, panic attacks, fainting spells), they were manageable. Prior to getting 'really sick' in 2018, I was fearless, traveling the world, conducting international humanitarian work, working full-time, eating whatever I chose (minus gluten, and dairy), and essentially, a yeasayer. As mentioned, I had some ongoing health concerns prior to then, but it did not stop me from living my life.
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