Join A Cure in Sight, an ocular melanoma foundation, in sharing stories + raising awareness for OM patients and their families. Here we share information and insights on treatment, research, and living with ocular melanoma.
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As a new parent of a child with a rare genetic syndrome, I was lost. There was no guide. There was no rulebook. This was not what I had imagined. As I navigated my way through this new reality, I realized something that should have been simple, but was not. A truth that had always been there, but that I had lost sight of for a time - I am not alone. And neither are you. These are the stories of my family, and of families like ours. These are the stories of how we have persevered, cried, bond ...
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Poetry. My life. Meditation. Removing mental health stigmas one awakening at a time. The revelations I share and deeply moving poetry I write is intended to inspire you to find your own inner light. Take my hand, let’s venture through the poetic mind. I would like to use this platform to guide my listeners through meditations that provide support and healing. Blessings. ❤️
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Discussing all things Politics, science, entertainment, etc. For all generations past and present!
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ONCE UPON A GENE - EPISODE 238 Where the Glimmers Can Surface We were at our beloved park— the one we helped renovate to be inclusive and accessible, then made a trip to a nearby grocery store nearby. Ford loves automatic doors. The grocery store has the usual automatic doors at the entrance, but also has big black swinging doors at the rear of the…
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"What Friends and Loved Ones Do: A Cancer Diagnosis Support Journey"
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Welcome to the Eye Believe Podcast! In this episode, we're joined by the incredible Aimee Kandrac, founder of What Friends Do, to explore the essential role friends and loved ones play in supporting those with a cancer diagnosis. Episode Highlights: Introduction to Aimee Kandrac and What Friends Do: Megan introduces Aimee and her impactful organiza…
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ONCE UPON A GENE - EPISODE 237 Join Us for The Global Genes Week In Rare The 2024 Global Genes Week in RARE is happening in Kansas City, MO from September 25-28th. This is a powerhouse week packed with three incredible advocacy events that you can't miss— the Rare Equity Forum, the Rare Advocacy Summit and the Rare Champions of Hope Awards ceremony…
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Roadmap for Navigating Uveal Melanoma
1:36:35
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Navigating a Uveal Melanoma Diagnosis: Expert Insights Quarter 2 Webinar Description: Welcome to an enlightening episode of our webinar series, where we dive deep into the complexities of navigating a Uveal Melanoma diagnosis. In this episode, we are joined by renowned ocular oncologists, Dr. Jesse Berry and Dr. Marlana Orloff who bring their exten…
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Rare Disease Research - Insights from Charles River Labs with Roxana Redis and David Fischer
30:40
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ONCE UPON A GENE - EPISODE 236 Rare Disease Research - Insights from Charles River Labs with Roxana Redis and David Fischer Charles River Labs is a rare disease research and drug development powerhouse and their work leads to life-changing treatments. I'm joined by Roxana Redis and David Fischer to talk about Charles River Labs’ support, rare disea…
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Conquering Overwhelm with Janice Russell, the Overwhelm Slayer
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In this empowering episode of the Eye Believe Podcast, we are joined by Janice Russell, known as the Overwhelm Slayer. Janice specializes in helping individuals manage the chaos and stress that come with new or changing medical diagnoses. With her unique blend of expertise in special education, corporate organization, and hands-on productivity, Jan…
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Rare Connections in NMOSD (Neuromyelitis Optics) - Finding Strength in Community and the Power in Asking for Help with Craig Klein
37:15
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ONCE UPON A GENE - EPISODE 235 Rare Connections in NMOSD (Neuromyelitis Optics) - Finding Strength in Community and the Power in Asking for Help with Craig Klein My guest, Craig Klein, has been living with Neuromyelitis Optics Spectrum Disorder (NMOSD) for 8 years. He shares his challenges, strengths and about his journey of resilience. EPISODE HIG…
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"Healing Touch: Sandy's Insights on Reiki and Cancer Care"
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Welcome to another inspiring episode of the Eye Believe Podcast! Today, we are joined by Sandy, a dedicated practitioner at Life Spark, who shares her profound insights into the transformative power of Reiki and healing touch therapies, especially for cancer patients. Discover how these holistic practices are making a significant impact on patients…
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Chasing Glimmers - Illuminating Hope and Lessons in the Rare Disease Journey - Finding Glimmers for a Happier, Healthier Life with Katie Lloyd
44:52
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ONCE UPON A GENE - EPISODE 234 Chasing Glimmers - Illuminating Hope and Lessons in the Rare Disease Journey - Finding Glimmers for a Happier, Healthier Life with Katie Lloyd This new series, Chasing Glimmers, is all about finding the small, hopeful moments that shine through the darkest of times. Like you, Katie and I know how challenging the rare …
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"Preparing for Eye Enucleation: What You Need to Know"
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In this episode of the Eye Believe Podcast, we delve into the topic of eye enucleation, offering a detailed guide on how to prepare for this significant medical procedure. We cover: An overview of eye enucleation Essential pre-surgery steps The surgical process explained Tips for post-operative care and recovery Emotional and psychological support …
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Are You Worried About Your Baby's Development - Enroll in Project FIND-OUT - You May Qualify for Free Whole Genome Sequencing
8:42
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ONCE UPON A GENE - EPISODE 233 Are You Worried About Your Baby's Development - Enroll in Project FIND-OUT - You May Qualify for Free Whole Genome Sequencing LINKS AND RESOURCES MENTIONED Project Findout https://projectfindout.org/ CONNECT WITH EFFIE PARKS Website https://effieparks.com/ Twitter https://twitter.com/OnceUponAGene Instagram https://ww…
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Dr. Jose Lutzky on Supporting International Uveal Melanoma Patients"
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click picture to watch on YouTube!!!!!!!!!!! "Welcome to another episode of the Eye Believe Podcast! In this episode, host Megan is joined by Dr. Jose Lutzky from the Sylvester Comprehensive Cancer Center to discuss the unique challenges and solutions for international uveal melanoma patients. Dr. Lutzky provides insights into his melanoma program,…
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"From Survivor to Warrior: Tara's Ocular Melanoma Journey"
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Join us in this powerful episode of the Eye Believe Podcast as we share the inspiring story of Tara Ruckman. Tara has faced multiple cancer diagnoses, including subcutaneous melanoma and, most recently, ocular melanoma. Despite these immense challenges, Tara's journey is a testament to strength, resilience, and hope. In this episode, you'll learn: …
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Understanding Genetic Counseling - Essential Insights for Parents – Navigating Appointments, Referrals, Testing, and Insurance with Expert Abby Turnwald MS CGC
27:36
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ONCE UPON A GENE - EPISODE 232 Understanding Genetic Counseling - Essential Insights for Parents – Navigating Appointments, Referrals, Testing, and Insurance with Expert Abby Turnwald MS CGC Abby Turnwald is a genetic counselor here to talk about genetic testing and the crucial role genetic counselors play in guiding families through the complexity…
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"20 Weeks Pregnant and Diagnosed with Cancer: Amy's Story of Hope"
37:36
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In this compelling episode of the Eye Believe Podcast, we are honored to share the story of Amy Reeves Clews, a courageous mother who was diagnosed with ocular melanoma at 20 weeks pregnant. Amy's journey is a testament to resilience, hope, and the power of a mother's love. After experiencing unusual symptoms like flashing floaters, Amy sought medi…
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The Power of Genetic Diagnosis - More Than Just a Label
11:48
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By Effie Parks
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Balancing Rare Disease Advocacy and Family - Navigating the Complexities and Embracing Imperfections with Nikki Stusick
36:55
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ONCE UPON A GENE - EPISODE 230 Balancing Rare Disease Advocacy and Family - Navigating the Complexities and Embracing Imperfections with Nikki Stusick Nikki Stusick is the mom of a child with an initial VUS diagnosis and then a different pathogenic diagnosis. We talk about the complexities of balancing advocacy work, family life, when to choose one…
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"Transforming Memories into Legacy: No Story Lost with Founder Andrew"
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https://youtu.be/BJtJUn2O8vg Find out more at nostorylost.com Join us in this heartfelt episode of the "I Believe Podcast" where we dive deep with Andrew, the founder of No Story Lost. Discover how a simple family tradition of storytelling transformed into a mission to preserve precious memories for generations. Andrew shares the inspiring journey …
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Uniting Strengths - Rare Disease Collaboration on a Shared Patient Registry Through Sanford Cords with Cure Mito and Hope for PDCD Leaders Frances Muenzer Pimentel and Sophia Zilber
35:10
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ONCE UPON A GENE - EPISODE 229 Uniting Strengths - Rare Disease Collaboration on a Shared Patient Registry Through Sanford Cords with Cure Mito and Hope for PDCD Leaders Frances Muenzer Pimentel and Sophia Zilber Frances Muenzer Pimentel and Sophia Zilber have united the Hope for PDCD Foundation and the Cure Mito Foundation to launch a global joint…
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Understanding Immunotherapy: A Revolutionary Cancer Treatment
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Welcome to our latest episode where we dive deep into the world of immunotherapy, an innovative approach to cancer treatment that leverages the body’s own immune system to fight cancer. Join us as we explore how immunotherapy offers hope and new options for patients, especially those dealing with conditions like ocular melanoma. In this episode, we…
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Episode 228 - Strength In Unity - The Power of Consolidated Rare Disease Advocacy, Collaborative Breakthroughs, and the Every Cure Initiative with Dr. David Fajgenbaum
51:51
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ONCE UPON A GENE - EPISODE 228 Strength In Unity - The Power of Consolidated Rare Disease Advocacy, Collaborative Breathroughs, and the Every Cure Initiative with Dr. David Fajgenbaum Dr. David Fajgenbaum is is a groundbreaking physician-scientist, disease hunter, speaker, and national bestselling author of Chasing My Cure: A Doctor's Race to Turn …
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ANCESTRAL TRAUMA Healing: Releasing BUNDLES, Forgiveness of SELF, the Metaphysical Mirror & MORE
37:03
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ANCESTRAL TRAUMA Healing: Releasing BUNDLES, Forgiveness of SELF, the Metaphysical Mirror & More Advertising Inquiries: https://redcircle.com/brandsBy Dave Zed
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Bringing Balance Back to the Language of Disability from The Special Needs Mom Podcast with Kara Ryska
51:53
51:53
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Connect with Kara, host of The Special Needs Mom Podcast: Instagram: https://www.instagram.com/thespecialneedsmompodcast/ Website: https://www.kararyska.com/ Coaching Opportunities Pathway to Peace {Group Coaching Program}: Schedule a Consult or Contact Me Join The Special Needs Mom Podcast Community FaceBook Group!! Click here to Request to Join…
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Pneumatics, Free Time, Airships, Antiquitech & Dave's Rant On Suppressed Technology Methodologies
1:28:49
1:28:49
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Pneumatics, Free Time, Airships, Antiquitech & Dave's Rant On Suppressed Technology Methodologies. Advertising Inquiries: https://redcircle.com/brandsBy Dave Zed
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Triumph Over Darkness: A 20-Year Ocular Melanoma Survival Story, Guest, Erin Gunia
42:13
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In this deeply moving video, Erin recounts her 20-year battle with ocular melanoma, offering insights and hope to those facing similar challenges. Diagnosed at just 23, Erin's journey through treatments, recurrences, and personal growth illuminates the path of resilience and survival. Highlights of Erin's Story: - Early symptoms and the crucial ste…
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From Classrooms to Communities - Parents Visionary Journey in Education, Living, and Advocacy for Inclusion and Epilepsy Funding with Jillian and Scott Copeland
45:12
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ONCE UPON A GENE - EPISODE 226 From Classrooms to Communities - Parents Visionary Journey in Education, Living, and Advocacy for Inclusion and Epilepsy Funding with Jillian and Scott Copeland Jillian and Scott Copeland are husband and wife, advocates and pioneers who have transformed their personal journey of having a child diagnosed with epilepsy.…
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The Bravery of the Brokenhearted - A Big Brothers Perspective on Grief From the Loss of a Sibling with Sanfilippo Syndrome with Noah Siedman
46:33
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ONCE UPON A GENE - EPISODE 225 The Bravery of the Brokenhearted - A Big Brothers Perspective on Grief From the Loss of a Sibling with Sanfilippo Syndrome with Noah Siedman Noah Siedman was a big brother to Ben who had Sanfilippo Syndrome, a devastating disease that leads to childhood dementia and premature death. He joins me to talk about his sibli…
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The Complicated World of ICD10 Codes with CEO and Co-Founder of SLC6A1 Connect - Amber Freed
28:47
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ONCE UPON A GENE - EPISODE 224 The Complicated World of ICD10 Codes with CEO and Co-Founder of SLC6A1 Connect - Amber Freed Advocate, rare mom and Founder of SLC6A1 Connect, Amber Freed joins me to talk about ICD-10 codes— the frustrations, the battles, and the common-sense changes we're fighting for in the rare disease community that are pivotal t…
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Rare Epilepsy Network with Ilene Penn Miller and Christina Sanlnocencio
51:20
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ONCE UPON A GENE - EPISODE 223 Rare Epilepsy Network with Ilene Penn Miller and Christina Sanlnocencio Ilene Miller and Christina SanInocencio are advocates doing groundbreaking work at the Rare Epilepsy Network (REN), a volunteer network of epilepsy organizations banding together, sharing research efforts, and improving the lives of rare epilepsy …
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ONCE UPON A GENE - EPISODE 222 Krabbe Disease with Kasey Feldt Kasey Feldt is the mom of two- one year old Lukas and Dawson, who passed away from Krabbe disease. Kasey has become a passionate and unstoppable advocate, not only advocating for Krabbe disease, but also the newborn screening system so kids have a better chance at early detection. EPISO…
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BeginNGS - Newborn Genomic Sequencing to End the Diagnostic Odyssey with Dr. Stephen Kingsmore, Wendy Erler and Tom DeFay
38:03
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ONCE UPON A GENE - EPISODE 221 BeginNGS - Newborn Genomic Sequencing to End the Diagnostic Odyssey with Dr. Stephen Kingsmore, Wendy Erler and Tom DeFay I'm joined by Dr. Stephen Kingsmore, Wendy Erler and Tom DeFay to discuss BeginNGS, a ground-breaking initiative that stands at the forefront of genetic sequencing and rare disease diagnosis. EPISO…
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A Novel Class of Drugs to Treat Cancer | Getting to Know Aura Biosciences
22:53
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🔬Discover the groundbreaking journey with Aura Biosciences as they work to develop a novel class of targeted oncology drugs for multiple cancer indications, including for the primary treatment of ocular melanoma. In this episode of the Eye Believe Podcast, we dive deep with Eli de los Pinos, founder and CEO of Aura Biosciences, exploring the cuttin…
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A Rare Collection - From Financial Strain to Supportive Gain - A Call For Action
17:01
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ONCE UPON A GENE - EPISODE 220 A Rare Collection - From Financial Strain to Supportive Gain - A Call For Action There's power in storytelling- for the listener and the storyteller. A Rare Collection is a monthly series featuring people from the rare disease community, sharing a story with a common theme. EPISODE HIGHLIGHTS Katie Scheid The beginnin…
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Genomics England Clinical Lead for Genetic Counseling - Amanda Pichini
43:25
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ONCE UPON A GENE - EPISODE 219 Genomics England Clinical Lead for Genetic Counseling - Amanda Pichini Amanda Pichini is a genetic counselor from Genomics England, here to share their initiatives and mission. EPISODE HIGHLIGHTS What is your role at Genomics England and how did your career develop? I work at Genomics England as the Director of Clinic…
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Your Ocular Melanoma Story is WORTH Telling - Special guest, No Story Lost
21:44
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Join A Cure in Sight, an ocular melanoma foundation, to interview guest, Andrew from @nostorylost “Andrew Hall is the Co-Founder of No Story Lost. He started No Story Lost with his cousin and best pal, Jeremy. No Story Lost was born after Andrew and Jeremy recorded their Grandfather's story; they saw how important the result was for their family, b…
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Total Nutrition & Eye Health - Q1 Webinar w/ Dr. Hitchmoth
59:18
59:18
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Join A Cure in Sight, an ocular melanoma foundation, for our first quarter webinar, Good for the Eyes, Good for the Heart. Our guest, Dr. Dorothy Hitchmoth from the Ocular Wellness & Nutrition Society will discuss overall eye nutrition and health, and how caring for your whole body aids in caring for your eyes. Or follow along here for slides. ANNO…
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Facing Stage IV Cancer - Guest, Megan McClay
34:19
34:19
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“The difference between an adventure and an ordeal is your attitude.” Bob Bitchin Join A Cure in Sight, an ocular melanoma foundation, and special guest, Megan McClay. "𝗙𝗼𝗿𝗴𝗲𝘁 𝘀𝘁𝗿𝗶𝘃𝗶𝗻𝗴 𝗳𝗼𝗿 𝗮 𝗯𝗶𝗴𝗴𝗲𝗿 𝗵𝗼𝗺𝗲 𝗮𝗻𝗱 𝗮 𝗯𝗲𝘁𝘁𝗲𝗿 𝗰𝗮𝗿. 𝗦𝗹𝗼𝘄 𝗱𝗼𝘄𝗻, 𝗯𝗲 𝗴𝗿𝗮𝘁𝗲𝗳𝘂𝗹 𝗳𝗼𝗿 𝘄𝗵𝗮𝘁 𝘆𝗼𝘂 𝗵𝗮𝘃𝗲 𝗮𝗻𝗱 𝘁𝗮𝗸𝗲 𝘁𝗶𝗺𝗲 𝘄𝗶𝘁𝗵 𝘁𝗵𝗲 𝗽𝗲𝗼𝗽𝗹𝗲 𝘆𝗼𝘂 𝗹𝗼𝘃𝗲." 𝗧𝗵𝗶𝘀 𝗶𝘀 𝘁𝗵𝗲 𝗮𝗱𝘃𝗶𝗰𝗲 𝗳𝗿𝗼𝗺 𝗠𝗲𝗴𝗮𝗻 𝗠𝗰𝗖𝗹𝗮𝘆, 𝟯𝟬, 𝘄𝗵𝗼 𝗶…
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James G Robinson - More Than We Expected Author - Five Years with a Remarkable Child
53:26
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ONCE UPON A GENE - EPISODE 218 James G Robinson - More Than We Expected Author - Five Years with a Remarkable Child James Robinson is a dad and the author of More Than We Expected: Five Years With a Remarkable Child, a deeply moving book and a testament to the strength found in vulnerability, the importance of community and the boundless love that …
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Creating Your Own Math? Lightning Tells All, The Corner Of My Eye & The Tapered "Buildup" Matter(s)
18:57
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Creating Your Own Math? Lightning Tells All, The Corner Of My Eye & The Tapered "Buildup" Matter(s) Advertising Inquiries: https://redcircle.com/brandsBy Dave Zed
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Coping with Ocular Melanoma as a Family: 2024 Eye on Mental Health Session 4
1:20:45
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Ocular Melanoma is a family disease. It doesn't just affect one person - having this diagnosis, the fear of the unknown can affect everyone from immediate family, friends, and more. Learning how to support each other with varying needs and boundaries amidst your diagnosis is worth the listen to this unique patient panel, led by patient and therapis…
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Resilience In Spite of Fear: 2024 Eye on Mental Health Session 3
42:45
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Ocular Melanoma patients face a LOT in their diagnosis journey. Facing the fear of recurrence, the fear around scans, fear of dying - there's a lot to unpack. Join us to hear from Katie Wilson, a therapist and patient herself, who specifically studies resilience and the development of post traumatic growth. Katie Wilson is a therapist and an adult …
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Why therapy? Therapy Modalities & Radical Acceptance: 2024 Eye on Mental Health Session 2
51:33
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Ocular Melanoma is enough to justify extra support. Dr. Allison Dashow, a patient and psychologist, shares a summary of therapies patients may find supportive, emphasizing the skills that can be developed to reach a point of radical acceptance in your diagnosis. Dr. Allie Dashow is a clinical psychologist and has been seeing clients for psychothera…
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Making Meaning of the Cancer Journey: 2024 Eye on Mental Health Session 1
39:56
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Ocular Melanoma is a beast of a diagnosis. Fellow cancer survivor and patient Eve Bogdanove shares strategies for coping with your diagnosis and making meaning throughout the journey. Eve N. Bogdanove has been a clinical social worker for 28 years. She is a psychodynamically trained with additional training in IFS, SE, EMDR, DBT and is a AASECT Cer…
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More of Everything - How I Became a Better Parent to My Child With Extreme Special Needs By Lifting My Emotional Burdens With SYNGAP1 Mom - Janie Reade
51:07
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ONCE UPON A GENE - EPISODE 184 More of Everything - How I Became a Better Parent to My Child With Extreme Special Needs By Lifting My Emotional Burdens With SYNGAP1 Mom - Janie Reade Janie Reade is an author and mom to three adult sons, one with a severe neurodevelopmental disorder caused by a mutation in the SYNGAP1 gene. We'll talk about her uniq…
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Uniting Science and Hope - COMBINEDBrain and it's Quest to Transform Research and Treatment for Rare Genetic Neurodevelopmental Disorders with Terry Jo Bichell
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ONCE UPON A GENE - EPISODE 217 Uniting Science and Hope - COMBINEDBrain and its Quest to Transform Research and Treatment for Rare Genetic Neurodevelopmental Disorders with Terry Jo Bichell Terry Jo Bichell is a rare mom, neuroscientist and the founder of COMBINEDBrain, a nonprofit organization revolutionizing the approach to clinical treatments fo…
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The Unseen Hand(s) of Human History: A Deep-Dive Conversation w/ Ex DoD Intelligence
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The Unseen Hand(s) of Human History: A Deep-Dive Conversation w/ Ex DoD Intelligence Advertising Inquiries: https://redcircle.com/brandsBy Dave Zed
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A Rare Collection - Five Advocacy Aces Share Their Conference Commandments
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ONCE UPON A GENE - EPISODE 201 A Rare Collection - Five Advocacy Aces Share Their Conference Commandments EPISODE HIGHLIGHTS Melissa Hioco, STXBP1 DO: Offer a family hospitality room where parents can see the broadcast and stay involved in the conference. Provide sibling spaces and make them feel special. Spend the extra money to provide a buffet d…
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Soundtrack of Silence - Love, Loss, and a Playlist for Life with Neurofibromatosis Type 2 (NF2) Patient Advocate - Matt Hay
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ONCE UPON A GENE - EPISODE 216 Soundtrack of Silence - Love, Loss, and a Playlist for Life with Neurofibromatosis Type 2 (NF2) Patient Advocate - Matt Hay Matt Hay has a disorder called Neurofibromatosis type 2 (NF2) and how he has more than overcome the challenges that came with it— he has thrived because of it. He is the author of a new book, Sou…
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Eye on COOG: an Eye Believe Mini-Seminar
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Join A Cure in Sight, an ocular melanoma foundation, to bring you an Eye Believe Mini-Seminar, Eye on COOG, where we're joined by Dr. Harbour, Dr. Reichstein, Dr. Williams, and Dr. Correa to discuss the Collaborative Ocular Oncology Group, it's founding and history, the research this collaborative study has yielded, and where COOG hopes to take the…
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Beyond the Crossroads- Rebuilding and Reclaiming Identity After Sacrificing Careers for Caregiving with Emily Crawford
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ONCE UPON A GENE - EPISODE 215 Beyond the Crossroads- Rebuilding and Reclaiming Identity After Sacrificing Careers for Caregiving with Emily Crawford Emily Crawford left her lifelong dream job of being a teacher to surrender to the demands of care-giving. She joins me to discuss identity loss and metamorphosis after becoming a parent to a medically…
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