Shows
The Hardest Job EverCultural & Generational Beliefs around MovementSeason 3, Episode 6: In South Asian families, “healthy” usually meant “chubby," and strength or movement were barely part of the conversation. Now as moms, we’re unlearning those generational myths and figuring out how to raise kids who feel strong, confident, and proud of their bodies.In this episode, we’re joined by pediatric physical therapist Shivani Rami (@wigglestherapy) to unpack:• Why “eat, eat, eat” quickly turns into “don’t eat, don’t eat”• The pressure to fatten babies up with ghee, jaggery, and “more, more, more”• How body shaming shows up during pregnancy and postpartum• The cultural sti...
2025-08-2239 minThe Hardest Job EverTiny Bodies, Big Moves: Baby Development & Movement Myths with Shivani RamiSeason 3, Episode 5: Is my baby behind? Should they be rolling, crawling, walking by now? Or are they just taking their sweet time? The comparison game can feel endless and Instagram doesn’t help.In this episode, we sit down with pediatric physical therapist Shivani Rami, PT, DPT, founder of Wiggles Therapy (@wiggles.therapy), to get real about baby milestones, motor development, and why early intervention matters.We cover:• Why tummy time is foundational (and why not all tummy time counts)• The signs and treatment of torticollis (aka the flat head/neck tightness struggle)• C...
2025-08-1938 min
The SPE PodcastSPE Live Podcast: Permanent Magnet Motors in Artificial Lift - Technologies, Safety, and Best Practices. From the Permian to the WorldElectrical Submersible Pumps continue to play a vital role in artificial lift, offering efficient and scalable solutions across a wide range of reservoir conditions. In recent years, Permanent Magnet Motors (PMMs) have gained significant momentum as a preferred alternative to traditional Induction Motors (IMs) in ESP systems. While PMMs have been part of the industry since the 1990s, their widespread adoption has accelerated over the past decade, driven by advancements in motor efficiency, drive technology, and integrated control and monitoring systems. These innovations have contributed to lower power consumption, improved environmental performance, and enhanced economic returns, making PMMs a...
2025-05-1530 min
Evington EchoEvington GP Meeting 10th December 2024A Public Meeting was held on Tuesday 10th December at 7.00pm at
Evington Village Hall LE5 6 DN
This meeting was chaired by Cllr. Zuffar Haq (which invited residents to give their views about the changes taking place in Evington – the closure of the Doctors Surgery on the Common, the closure of the Post Office and the closure of the Pharmacy.)
Full meeting podcast:
https://evingtonecho.uk/wp-content/uploads/2024/12/Evington-GP-Meeting-001.mp3
Present at the meeting were:
Cllr Zuffar Haq (Chair) He was representing many residents who had contacted him and were...
2024-12-121h 16
Showbox - Entertainment Podcast#Zindaginama - Watch or Not?
With six stand-alone episodes Zindaginama brings together an incredible cast including Shreyas Talpade, Prajakta Koli, Lillete Dubey, Priya Bapat, Shweta Basu Prasad, Sumeet Vyas, Tanmay Dhanania, Shivani Raghuvanshi, Anjali Patil, Yashaswini Dayama, Mohammad Samad, Shruti Seth and Sayandeep Sengupta.
Each story intricately weaves together and focuses on mental health stigma. Check out this review to see if this series is worth the watch!
2024-10-1703 min
Sur Studio PodcastEp 15: Work SMARTER not harder in your Interior Design biz with Shivani VyasIn this episode, we dive into the world of working smarter, not harder!!
Join us as we sit down with the insightful Shivani Vyas, who shares invaluable strategies to optimize your Interior Design business... Discover how to streamline your workflow, increase productivity, and achieve more in less time.
So happy to have you here!
Pri.
IG: @surstudio.id
WEBSITE: surstudiointeriordesign.com
2023-11-2943 min
Room by Room: The Home Organization Science Insights PodcastShivani Vyas: Remodeling Your Home on a Budget | Room by Room #16Join us for an exciting new episode of Room by Room: The Home Organization Science Insights Podcast, where we explore creative and affordable ways to give your home a brand-new look! Our host, Gabriella Joustra, is joined by the talented Shivani Vyas, seasoned residential interior designer with over four years of experience in the field.
With a passion for educating communities on industry topics, Shivani has been featured in renowned publications such as Better Homes & Gardens, My Domaine, and Martha Stewart. In this insightful discussion, she shares her expertise on home remodeling and how it differs from...
2023-03-031h 08Room by Room: The Home Organization Science Insights PodcastShivani Vyas: Remodeling Your Home on a Budget | Room by Room #16Join us for an exciting new episode of Room by Room: The Home Organization Science Insights Podcast, where we explore creative and affordable ways to give your home a brand-new look! Our host, Gabriella Joustra, is joined by the talented Shivani Vyas, seasoned residential interior designer with over four years of experience in the field.
With a passion for educating communities on industry topics, Shivani has been featured in renowned publications such as Better Homes & Gardens, My Domaine, and Martha Stewart. In this insightful discussion, she shares her expertise on home remodeling and how it differs from...
2023-03-031h 08
Being Rare PodcastLEAP Summit: Session Four - Advocacy and the Legislative LandscapeSession Four of the LEAP into Advocacy Virtual Summit is titled Advocacy and the Legislative Landscape. The session moderator is Shivani Vyas, Host of The Rare Disorder Podcast. The session presenters are Ella Balassa, Patient Advocate & Consultant and Laura Romano, Patient Advocate. The fireside chat includes Ella Balassa, Laura Romano, and Jennifer Harris, Health Policy Advocate at Alabama Arise. The LEAP into Advocacy Virtual Summit explores how we, as advocates, patients, and caregivers, use social health and digital concepts to inform and influence critical health decisions. We hope you enjoy this special audio edition of the E.WE Foundation's...
2022-07-2555 min
The Rare Disorder Podcast40. Meet an Expert: Wes Michael, President at Rare Patient VoiceShow Notes:
In this episode, I chat with Wes Michael, President at Rare Patient Voice.
Wes Michael, President and Founder of Rare Patient Voice, has been involved in rare and orphan diseases since 1998, interviewing and surveying patients, caregivers, physicians, nurses and advocacy leaders. Wes has more than 40 years experience in marketing research, and more than 20 years in healthcare marketing research.
Rare Patient Voice, LLC provides patients and caregivers with rare diseases an opportunity to voice their opinions through surveys and interviews to improve medical products and services.
While Rare Patient Voice...
2022-06-1830 minThe Rare Disorder Podcast39. What's to Come + Meet an Expert: Ben LeNail, Healthcare Investor & ConsultantShow Notes:
In this episode, I chat with Ben LeNail, Healthcare Investor & Consultant.
Ben Lenail, based in Palo Alto CA, has consulted with biotech companies such as Minoryx Therapeutics, Autobahn Therapeutics, and Deep Genomics. Ben is an investor in 15 early-stage healthcare companies with HealthTech Capital. He is a mentor with the Chan Zuckerberg Initiative; and serves on the Board of ALD Connect and the Advisory Board of the UCSF Center for Vulnerable Populations.
Ben has worked in high-tech in Silicon Valley for 30+ years. He’s a graduate of the University of Washington in Seatt...
2022-05-2154 minThe Rare Disorder Podcast38. GA RDAC Update + Meet an Expert: Dr. Terry Jo Bichell, Founder & Director at COMBINEDBrainShow Notes:
In this episode, I chat with Dr. Terry Jo Bichell, Founder & Director at COMBINEDBrain.
Terry Jo Bichell worked as a documentary filmmaker in the early days of videotape, then became a public health nurse-midwife after filming a difficult birth in West Africa. When her youngest child, Lou, was diagnosed with Angelman syndrome, she switched from midwifery to clinical research on Angelman syndrome. Eventually, she went back to school to earn a PhD in neuroscience from Vanderbilt University in an effort to find treatments for her son. Along the way, she studied gene-environment interactions i...
2022-02-1249 minThe Rare Disorder Podcast37. Rare Disease Week + Meet a Fighter: Daniel Dry Dock Shockley, Retired Navy & 10-year Hereditary Colon Cancer WarriorShow Notes:
In this episode, I chat with Daniel Dry Dock Shockley, a retired Navy, a veteran, and a 10 year hereditary colon cancer warrior.
Daniel serves as a member of the University of Michigan Genetic Hereditary Testing (Might) Advisory Board and of the University of Texas Health Center, San Antonio, Texas, where he does live-case presentations for the Genetics in GI Malignancy multidisciplinary annual conferences.
Daniel says that his purpose is to educate the world about Attenuated Familial Adenomatous Polyposis (AFAP) and continuing the legacy of Dr. Henry T. Lynch, who emphasized the...
2022-01-2953 minThe Rare Disorder Podcast36. Welcome Back + Meet an Expert: Beth Nguyen, Founder at Rare Strides & GA NORD AmbassadorThe episode we've all been waiting for, and it's finally here! In this episode, I'm so honored to chat with Beth Nguyen. Beth is the Managing Director; Founding Partner, and President of Rare STRIDES.
Beth is a seasoned registered nurse with a diverse background in critical care, transplant, and emergency room; Honored Atlanta AJC Nurse of the Year Nominee three years consecutively for excellence in bedside care; Serves as the volunteer Georgia Ambassador for the National Organization for Rare Disorders; Led efforts to establish the Georgia Rare Disease Advisory Council; Leader of Annual Rare Disease Day events...
2022-01-2249 min
R is for Rare27. Rare Disease Advocacy and Podcasting ft. Shivani Vyas, Founder and Host of The Rare Disorder PodcastAfter a few month hiatus (due to the craziness of senior year), this week’s episode is a new and very exciting rare disease podcast crossover episode! I was featured on The Rare Disorder Podcast back in September, and this is my interview with Shivani for R is for Rare! Shivani Vyas is a high school student, and the Founder and Host of The Rare Disorder Podcast, a podcast dedicated to spreading awareness for rare diseases and elevating the voices of those affected by them. Her personal connection to the community traces back to her grandmother, who was affected by a...
2022-01-071h 01The Rare Disorder Podcast35. Meet an Expert: The Rare Disorder Podcast X Cure Rare Disease ft. Rich Horgan, Founder & PresidentIn this episode, I chat with Rich Horgan, the Founder and President of Cure Rare Disease.
Cure Rare Disease is developing custom therapeutics that are as unique to the individuals they are meant to treat. Their mission is to offer effective, life-saving treatments developed through collaborations with world-renowned researchers and clinicians, and in partnership with our generous donors. Their customized therapeutics are designed specifically for the men and women who continue to fight for their right to live long, full, healthy lives despite having been diagnosed with a rare genetic disorder for which they’ve been told the...
2021-11-2117 minThe Rare Disorder Podcast34. Meet a Fighter: Partial Trisomy Of 8q ft. Saida MahoneyIn this episode, I chat with Saida Mahoney, a fighter of Partial Trisomy Of 8q.
Saida Luvenia Mahoney is 25 years old and lives in Oakland, California. She is an author and a proud student at Modesto Junior College, San Joaquin Delta College, and Merced College.
Saida is a performing arts major and creates music, does dance, and performs in theatre. She also does recording arts, songwriting, and acting. Saida is a Pageant Queen and was crowned 2021 California Miss Amazing Queen and was also a finalist at The Miss Amazing Nationals. In addition, she is a...
2021-11-1312 minThe Rare Disorder Podcast33. Meet a Partner: The Rare Disorder Podcast X Ella Balasa, Patient Advocate, Speaker, and ConsultantIn this episode, I chat with Ella Balasa, a Patient Advocate, Speaker, and Consultant.
Ella is passionate about amplifying the patient voice in healthcare.
Having a background in biology, Ella has experienced both sides of the research spectrum - as a patient and a scientist. Examining antibiotic resistant bacteria in the environment, which is the same bacteria that thrive in the lungs of those with CF, her work in the lab intersected with her health. This fueled Ella's interest in involving herself in a research capacity on committees and advisory roles with organizations providing a patie...
2021-11-0542 minThe Rare Disorder Podcast32. Meet an Expert: The Rare Disorder Podcast X Patients Rising ft. Terry Wilcox, CEOIn this episode, I chat with Terry Wilcox, the Founder and Executive Director of Patients Rising and Patients Rising Now.
Formed in 2015 as a 501(c)3, Patients Rising has developed a significant following of over 110,000 patients and caregivers and has guided more than 25,000 of them on their journeys to advocate for themselves and their loved ones to get the care and treatments they need to live a fulfilling life. Patients Rising Now is a national nonprofit organization dedicated to advocating for the rights of patients with chronic and life-threatening illnesses. We work at community, state and federal levels t...
2021-10-3025 minThe Rare Disorder Podcast31. Meet a Fighter: Familial Adenomatous Polyposis & Short Bowel Syndrome ft. Jenny JonesIn this episode, I interview Jenny Jones, a fighter of Familial Adenomatous Polyposis and Short Bowel Syndrome.
Jenny was diagnosed with the rare, hereditary colon cancer syndrome Familial Adenomatous Polyposis at age 8 and had her first surgery to remove her colon at age 9. After experiencing life-threatening complications, Jenny required 4 more surgeries that year and developed another rare disease - Short Bowel Syndrome as a result. She lived with an ileostomy for 6 years before having it reversed into a Straight Pull Thru and again experienced life-threatening complications. Jenny has been able to surpass all the odds though and...
2021-10-2420 minThe Rare Disorder Podcast30. Meet an Expert: The Rare Disorder Podcast X Global Genes ft. Parvathy Krishnan, Foundation Alliance ManagerIn this episode, I chat with Parvathy Krishnan, a rare mom and the Foundation Alliance Manager at Global Genes. Global Genes provides hope for the more than 400 million people affected by rare disease around the globe. They fulfill their mission by helping patients find and build communities, gain access to information and resources, connect to researchers, clinicians, industry, government, and other stakeholders, share data and experiences, stand up, stand out, and become effective advocates on their own behalf.
Parvathy Krishnan earned her MS from Rutgers University, NJ and her clinical training from Mayo Clinic of Health Sciences...
2021-10-2426 minThe Rare Disorder Podcast29. Meet a Partner: The Rare Disorder Podcast X YARR ft. Courtney Felle, Patient Engagement FellowIn this episode, I chat with Courtney Felle, a Patient Engagement Fellow at EveryLife Foundation for Rare Diseases.
The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments and cures.
The Young Adult Representatives of RDLA (YARR) are a highly motivated group of rare disease community members between 16 and 30 years old, including patient advocates, siblings, caregivers, and loved ones. The main purpose of YARR is...
2021-10-1828 minThe Rare Disorder Podcast28. Meet an Expert: The Rare Disorder Podcast X Georgia Bio ft. Maria Thacker-Goethe, CEOIn this episode, I chat with Maria Thacker-Goethe, the CEO of Georgia Bio.
Maria Thacker-Goethe has more than 13 years of experience in non-profit management and development. She was appointed president and CEO for Georgia Bio and the Georgia BioEd Institute in February 2019. Maria has helped build the organization into one of the top state bioscience and medtech associations through her community outreach and engagement, member development, and leadership on various special projects and programs to increase community connections and resources. Additionally, she had been responsible for conceiving, developing and executing a comprehensive internal and external communications strategy.
2021-10-0818 minThe Rare Disorder Podcast27. Meet an Expert: The Rare Disorder Podcast X Dr. Sarah McCoolIn this episode, I chat with Dr. Sarah McCool, who is a Clinical Associate Professor and Director of Undergraduate Programs at the School of Public Health at Georgia State University. In this podcast, Dr. McCool discusses various projects she has completed, causes she is passionate about, her extensive background and experience, and much more!
Dr. McCool has worked in global health in various capacities since 2010. She most recently worked to support a United States Agency for International Development (USAID)- funded child protection/anti-trafficking project in Haiti. She has worked extensively in the area of tuberculosis surveillance and...
2021-10-0316 min
The Rare Disorder Podcast26. Meet an Expert: The Rare Disorder Podcast X Dr. Monkol LekIn this episode, I chat with Dr. Monkol Lek, who is an assistant professor of genetics at Yale University, and an avid researcher with his own established lab, the Lek Lab, at Yale Medical School. He is also part of the research team at Cure Rare Disease, an organization with a mission to develop custom therapeutics that are as unique to the individuals they are meant to treat. In this podcast, Dr. Lek discusses what piqued his interest in rare disease research, his extensive background and experience, topics of interest, and much more!
Dr. Lek received an u...
2021-09-1552 minThe Rare Disorder Podcast25. Meet an Expert: The Rare Disorder Podcast X Rare Disease Innovation Institute ft. Tara Britt, CEOIn this episode, I chat with Tara Britt, who is the Associate Chair of the North Carolina Rare Disease Advisory Council and Founder and President of the Rare Disease Innovations Institute. Rare Disease Innovations Institute is a global non-profit focused on educating, engaging and equipping the rare disease community. Through policy, tools and data they achieve a higher quality of life, accelerating diagnosis and enabling access and treatment. Tara currently serves as Associate Chair of the North Carolina Rare Disease Advisory Council and Network. The council was created as a result of co-authoring legislation with a North Carolina patient ad...
2021-09-1126 minThe Rare Disorder Podcast24. Meet a Partner: The Rare Disorder Podcast X R is for Rare ft. Annie Watson, HostIn this episode, I chat with Annie Watson, a high school student, aspiring journalist and podcaster who has a rare sleep disorder called narcolepsy. She was diagnosed at 6 years old, and finally stepped into the rare disease community as a freshman in high school. She has been involved with Narcolepsy Network since 2018, and started her podcast, R is for Rare, in January 2021. She writes for her high school newspaper, works on set construction for her high school musicals, and is hoping to study journalism and political science in college next year.
Listen to her podcast, and follow...
2021-09-1050 minThe Rare Disorder Podcast23. Meet a Partner: The Rare Disorder Podcast X Our Odyssey ft. Anna Laurent, Head of ProgramsIn this episode, I chat with Anna Laurent, who is the Head of Programs and Initiatives at Our Odyssey, an organization which aims to connect young adults impacted by a rare or chronic condition with social and emotional support in the hope of improving their quality of life. Our Odyssey's vision is to establish a national organization with a platform that empowers, educates, and connects young adults experiencing health challenges. After becoming involved in numerous patient advocacy organizations, she found a lack of resources supporting young adults and this ignited her passion for uplifting the needs and voices of...
2021-09-0835 minThe Rare Disorder Podcast22. Meet a Partner: The Rare Disorder Podcast X Emory University JScreen ft. Melanie Hardy, Genetic CounselorIn this episode, I chat with Ms. Hardy, a licensed, certified genetic counselor at JScreen, which is a national-nonprofit offering genetic testing and education. JScreen is a national non-profit public health initiative, based out of the Department of Human Genetics at Emory University, is now offering cancer genetic testing for BRCA and 60 other cancer susceptibility genes. These genes are associated with many types of cancer including breast, ovarian, colorectal, prostate, pancreatic and 30+ others. The test is accessible 24/7 to all 50 states via an at-home, saliva testing with telehealth genetic counseling. They also do education and screening around reproductive carrier testing f...
2021-09-0647 minThe Rare Disorder Podcast21. Meet a Fighter: Freidreich's Ataxia ft. Hasitha IllaIn this episode, I interview Hasitha Illa, who is a fighter of Freidreich's Ataxia. Hasitha was diagnosed with a super rare disease called Friedreich's Ataxia. This is a genetic, progressive, neurodegenerative movement disorder, characterized by unsteady posture, frequent falling, and progressive difficulty of walking due to impaired ability to coordinate voluntary movements. This traumatic experience has made her into a stronger and a positive person. She loves to write and she is pretty confident on camera. So, she started a blog and a YouTube channel in order to spread awareness on disability related issues and rights! In addition, she h...
2021-08-2019 minThe Rare Disorder Podcast20. Meet a Partner: The Rare Disorder Podcast X AllStripes ft. Erin Smith, Patient Engagement ManagerIn this episode, I chat with Erin Smith, who is the Senior Patient Engagement Manager at AllStripes. Erin is responsible for running the ambassador program at AllStripes. She discusses what AllStripes does and its mission, ways patients can get involved and advocate for themselves through the ambassador program which she runs, her personal story with rare disease advocacy, and so much more!
AllStripes’ mission is to unlock new treatments for people with rare disease. They are a medical data science company that empowers patients and communities to generate regulatory-ready evidence for drug research in rare disease. About 1 in...
2021-08-1719 minThe Rare Disorder Podcast19. Meet a Fighter: SLC6A1 ft. Amber & Maxwell FreedIn this episode, I interview Amber, mom of Maxwell, a child with SLC6A1. Amber Freed's 2 year-old son, Maxwell, has a rare genetic neurological disease called SLC6A1. Amber is on a mission to raise $4,000,000 to advance a clinical trial that will cure every child with this disorder and give Maxwell a chance at life. To date, she has raised close to $3,000,000. SLC6A1 is the 10th cause of autism, 6th cause of epilepsy, and plays a major role in psychiatric conditions. She wants to create an impact on a multitude of children. She has started Milestones for Maxwell...
2021-07-2922 minThe Rare Disorder Podcast18. Meet a Fighter: Ehlers-Danlos Syndrome ft. Laura RomanoIn this podcast, I interview Laura Romano, who is a fighter of multiple rare diseases! Laura is a 23-year-old recent graduate from Simmons University where they majored in Neuroscience. They are currently working as an assistant teacher in a preschool classroom and will begin a Master’s of Education in Early Childhood Education in January. Laura lives with Classical-like Ehlers Danlos Syndrome, Mast Cell Activation Syndrome, and Small Fiber Neuropathy. Laura has previously volunteered with the Ehlers Danlos Society and the Marfan Foundation. They are a member of the Young Adult Representatives of RDLA and a YARR Leadership Academy gra...
2021-07-2620 min
Project SatyalokaVyas: The Teacher of the Millenniumगुरुर्ब्रह्मा ग्रुरुर्विष्णुः गुरुर्देवो महेश्वरः । गुरुः साक्षात् परं ब्रह्म तस्मै श्री गुरवे नमः ॥
The example of Krishna Dvaipayana teaches us that a Guru can be anyone irrespective of their caste, color, sex, and religion. Let us celebrate this day as Guru Pournima remembering Maharshi Vyas.Guru is the one who doesn’t just educate you but he enlightens you. A Guru is a person who makes you a ‘human’. Krishna Dvaipayana Vyasa, the author of Mahabharata, is revered on the day of Vyasa Purnima or the Guru Pournima. Vyas is also known to be the author of other works apart from Mahabharata. To know more, watch our video on 'Vyas: The Teacher of the millennium.
CREATED BY
Bhargav Joshi
DIRECTED BY
Ninad Kale
WRITTEN BY
Bhargav Joshi
RESEARCH AND LITERATURE REV...
2021-07-2309 minThe Rare Disorder Podcast17. Meet a Partner: The Rare Disorder Podcast X The Disorder Channel ft. Daniel DeFabio, Co-FounderIn this episode, I chat with Daniel DeFabio, a co-founder and co-producer of this film festival and rare awareness event, The Rare Disease Film Festival and The Disorder Channel which features speakers from industry, medical research centers and patient advocates. He also arranged for several private and public screening events around the world of selected films from our festival, often with speakers from our films.
At the age of 12 months Daniel’s first child Lucas was diagnosed with the rare disease Menkes Syndrome. After adjusting his expectations of what raising a child might look like Daniel began to...
2021-07-1621 minThe Rare Disorder Podcast16. Meet a Fighter: Batten Disease ft. Ali & Joshua GloverIn this episode, I interview Ali, whose son, Joshua, is a young fighter of Batten Disease. Ali Glover is mum to Joshua who was diagnosed with Batten Disease CLN6 in 2020. Every day is a challenge to her family, with a child fighting this horrendous disease - she finds his courage and perseverance through everything particularly amazing and inspiring. Now, Ali has started a Facebook group for those who would like to follow along on Joshua's journey. Here, she shares, the ups, downs, raises awareness, and collects funds.
Follow along on her and Joshua's advocacy journey!
F...
2021-07-1613 minThe Rare Disorder Podcast15. Meet a Fighter: Urea Cycle Disorder ft. Lynzi RussellIn this episode, I interview Lynzi, who is a fighter of Urea Cycle Disorder. Lindsey Kizer is a Carolina native from Belmont NC that loves to bake, listen to live music, spend time in her garden and with her husband and rescue pup. She was diagnosed with Narcolepsy at 29 after living with many of the symptoms for over 15 years. After being diagnosed she also was diagnosed with Fibromyalgia and Dysautonomi. She is now sharing her story to help raise awareness so that others do not have to go through the struggles she did.
Keep up with her...
2021-07-1410 minThe Rare Disorder Podcast14. Meet a Fighter: Thyroid Cancer ft. Carly FlumerIn this episode, I interview Carly, who is a fighter of Thyroid Cancer. Carly Flumer was diagnosed with stage I papillary thyroid cancer at the age of 27 and then with refractory disease at the age of 31. She received her Master’s degree from Boston University in Health Communication and Bachelor’s from George Mason University in Health Administration and Policy. While being diagnosed with the “C” word at such a young age was a surprise, as it would be to anyone, she found strength, support, and inspiration in sharing her cancer journey on social media. As a result of her heal...
2021-07-1214 minThe Rare Disorder Podcast13. Meet a Fighter: Leber Congenital Amaurosis ft. Melissa & Timothy GagyiIn this Podcast, I interview Melissa, whose son, Timothy, is a young fighter of Leber Congenital Amaurosis. Learn about this rare condition, and hear his story!
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2021-07-1211 minThe Rare Disorder Podcast12. Meet a Fighter: A Different Narcolepsy Story ft. Lindsey KizerIn this episode, I interview Lindsey Kizer, a fighter of Narcolepsy. Lindsey Kizer is a Carolina native from Belmont NC that loves to bake, listen to live music, spend time in her garden and with her husband and rescue pup. She was diagnosed with Narcolepsy at 29 after living with many of the symptoms for over 15 years. After being diagnosed she also was diagnosed with Fibromyalgia and Dysautonomi. She is now sharing her story to help raise awareness so that others do not have to go through the struggles she did.
Follow along on her advocacy journey!
2021-07-1016 minThe Rare Disorder Podcast11. Meet a Fighter: "Polygenic Mutational Syndrome of Methylations" ft. Robin PowersIn this Podcast, I interview Robin, who is a fighter of a rare Polygenic Disease, "Polygenic Mutational Syndrome of Methylations." Learn about this rare condition, and hear her story!
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2021-07-1026 minThe Rare Disorder Podcast10. Meet a Fighter: Generalized Lymphatic Anomaly ft. Leeya AlperinIn this episode, I interview Leeya, who is a fighter of Generalized Lymphatic Anomaly. Leeya is a honest person who at 20 years old, has been through a lot in 5 years. At 15 years old, she went down the path to find out what was wrong. Leeya was diagnosed with Generalized Lymphatic Anomaly (GLA) during the first semester of sophomore year of high school. Since then, her family and her have been on a crazy but incredibly rewarding journey. Rewarding in the fact that they love advocating and Leeya, herself, has found a deep passion for wanting to pursue a career...
2021-07-0615 minThe Rare Disorder Podcast9. Meet a Fighter: Short Bowel Syndrome + Intestinal Transplant (Medical PTSD BONUS) ft. Emily ParksIn this episode, I interview Emily, who is a fighter of Short Bowel Syndrome and Intestinal Transplant. Emily Parks is a chronically ill young professional based out of the Washington D.C. area working in behavioral health and patient advocacy. Having been diagnosed with short bowel syndrome in infancy and unable to absorb nutrition orally, she was dependent on Parenteral Nutrition until receiving an isolated small bowel transplant from MedStar Georgetown University Hospital. Combining her expertise in behavioral health with her lived experience of navigating multiple tertiary hospitals firsthand has led her down the path of studying the impact...
2021-07-0417 minThe Rare Disorder Podcast8. Meet a Fighter: Multiple Hereditary Exostoses ft. Marie Dagenais LewisIn this episode, I interview Marie, who is a fighter of Multiple Hereditary Exostoses. Marie D.L. is an artist, motivational speaker, journalist, digital creator, and Patient Advocate Leader that has been in the media for almost a decade, and uses her skills and expertise to help others grow their advocacy or organizations. She is the founder of R.A.R.E. by Marie D.L. and the creator of The R.A.R.E. Community. Through R.A.R.E. and The R.A.R.E. Community, she seeks to empower and spread visual representation of medical conditions. Th...
2021-06-3016 minThe Rare Disorder Podcast7. Meet a Fighter: Dysgraphia ft. Rifa Rafiq JuvaleIn this Podcast, I interview Rifa, who is a fighter of Dysgraphia. Learn about this rare condition, and hear her story!
Rifa is an avid food blogger, a finance enthusiast, and a rare disease advocate.
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2021-06-2810 minThe Rare Disorder Podcast6. Meet a Fighter: CLOVES Syndrome ft. Lindsey Johnson EdwardsIn this episode, I interview Lindsey, who is a fighter of CLOVES Syndrome. Lindsey is a 26 year old CLOVES patient that was initially diagnosed with Klippel Trenaunay Syndrome, another PROS condition. She currently lives in Dallas and is finishing up her Master’s degree in theology. Her interest in theology of suffering and flourishing is rooted in her journey as rare disease patient with recurrent health complications and challenges. She’s an AllStripes ambassador and CLOVES Family Advisory Council member who loves serving the rare disease community. CLOVES Syndrome is an ultrarare condition that is a recently described rare diso...
2021-06-2520 minThe Rare Disorder Podcast5. Meet a Fighter: Cowden Syndrome ft. David RossIn this episode, I interview David, who is a fighter of Cowden Syndrome. David Ross is a patient advocate and rare disease male mental mental health collaborator. David's activism began in 2017 when he was diagnosed with a rare disease called Cowden Syndrome due to being given a letter from his mother about getting tested before she passed away due to having the same condition.
After a period of coming to terms with this he became committed to raising awareness and supporting others impacted by this condition by helping set up a support group and also applying to...
2021-06-2412 minThe Rare Disorder Podcast4. Meet a Fighter: Hyperacusis ft. Jemma RosewaterIn this episode, I interview Jemma, who is a fighter of Hyperacusis. Jemma is 17. She has lived with hyperacusis since she was six years old. Jemma also has several other medical conditions, including being legally blind. Growing up, Jemma’s childhood has been very different from most kids. She has been unable to attend social events, go to the store or most public places, listen to music, wash dishes, go on vacation, or even take showers because the noise causes her extreme physical pain and lingering migraines. Her goal is to help raise awareness about my rare condition, hyperacusis an...
2021-06-2217 minThe Rare Disorder Podcast3. Meet a Fighter: 2q37 Deletion Syndrome ft. Megan FreemanIn this episode, I interview Megan, who is a fighter of 2q37 Deletion Syndrome. Megan Freeman started her rare disease journey when she was diagnosed with one at 16, dealing with all of the emotions that come along with having a rare disease and trying to come to terms with it to the best that she can. A little over two years ago, she got introduced to rare disease advocacy when she met some people near and dear to her in the rare disease world. She has designed blank greeting cards with onions, to raise awareness about her condition, as...
2021-06-1323 min
Project SatyalokaWhat Is Mahabharat? : A Literary AnalysisMahabharata is one of the greatest epics of ancient India. Divided into 18 Parvas, it has evolved from the earliest version called 'Jaya' having around 8000 verses, which is Vyas's original composition, to the modern version called 'Mahabharata' which has 100,000 verses.
It has a plethora of geographical details about various continents, sub-continents, kingdoms, Varshas and Parvatas. Explore the astronomical and geographical facets of Mahabharata through our detailed video on the topic!
CREATED BY
Bhargav Joshi
DIRECTED BY
Ninad Kale
WRITTEN BY
Bhargav Joshi
RESEAR...
2021-06-1109 minThe Rare Disorder Podcast2. Meet a Fighter: Narcolepsy ft. Tara O' ConnorIn this episode, I interview Tara, who is a fighter of Narcolepsy Type 2. Tara O'Connor is a volunteer EMT and a firefighter. She is also a full time student in the electroneurodiagnostic technology program. Tara is an auntie and a dog mama as well. She lives with Narcolepsy Type 2 - she was officially diagnosed in 2019, but had many symptoms for 20 years before she was diagnosed.
Follow along on her advocacy journey!
Instagram: https://www.instagram.com/sleepygal_96/
Facebook: https://www.facebook.com/tara.ann.9699
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2021-06-0411 minThe Rare Disorder Podcast1. Meet a Fighter: Idiopathic Intracranial Hypertension ft. Jen RomanIn this episode, I chat with Jen Roman, who is a fighter of Idiopathic Intracranial Hypertension. Jen Roman is a 27 year old living with Idiopathic Intracranial Hypertension & Behçets Disease. Instilled with a classic sense of Jersey-grit and a passion for helping others, she was a firefighter/EMT prior to her diagnosis and subsequent disability. After enduring ten brain procedures, Jen utilized her medical knowledge to become an expert, not only on the conditions that impact her, but also the technology that provides critical relief and management to her daily life. She spends most of her time fighting for l...
2021-05-2215 min
The Rare Disorder PodcastTRIO Related Intellectual DisabilityIn this episode, I interviewed a mom of a patient who has TRIO. I hope that this Podcast raises awareness of this rare condition! For information about TRIO: https://www.ncbi.nlm.nih.gov/books/NBK447257/ & https://www.malacards.org/card/trio_related_intellectual_disability & https://humandiseasegenes.nl/trio/professionals/
2020-06-2206 min
The Rare Disorder PodcastWelcome to The Rare Disorder Podcast!Some background of what this Podcast will be about! If you have any questions or concerns, please do not hesitate to reach out to me through theraredisorderpodcast@gmail.com or my Instagram @therdpodcast :)
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2020-06-0900 min
Beauty Healthy TipsShivani_Tanksale_hot 24 fame Shivani Tanksale hot undergoes a hot makeover after parting ways from ex-husband Sumeet Vyas.
2020-04-2701 min
My Life Be Like...Shivani Vyas - Interior DecoratorCheck it out as I talk to Shivani about her journey to Interior Decorator and small business ownership!She graduated from East Carolina University with her BS in Neuroscience and then got her graduate degree from Johns Hopkins University in Communications. Today, she runs her own interior decorating business (StudioVyas) in Macon, GA. Her journey has numerous twists and turns, even for someone who hasn't been doing this all that long. Shivani is unabashed in her telling of her story, as her advice is useful for people of all ages and in...
2020-04-2559 min