))
Imagine the excitement of becoming a new parent and then within hours finding out your child has a serious developmental disorder. That is exactly where Sanath Kumar Ramesh found himself in the summer of 2018. One year later, on his son’s first birthday, they found out that their son, Raghav, had an extremely rare mutation of the GPX4 gene. At the time, doctors told them that Raghav may be the only one on the planet with this genetic variant who had lived beyond one month of life. The progno ...
…
continue reading
Presented by the Williams Syndrome Association, the Starry Eyed Podcast will explore the joys and challenges of living with Williams syndrome, a rare genetic disability. Each episode will feature interviews with adults with WS and professionals and caregivers who are dedicated to raising awareness and resources.
…
continue reading
I'm Aware That I'm Rare: the phaware® podcast is devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. Through this series of impactful, insightful and, most importantly, hopeful stories from members of the global pulmonary hypertension community, we hope to further the global #phaware conversation as well as to capture, engage and enable misdiagnosed and undiagnosed PH patients because ea ...
…
continue reading
You want the best possible quality of life for your child regardless of diagnosis or prognosis. Raising a child with medical complexities is often lonely, scary and overwhelming. Join two parents of amazing children with rare medical complexities, Emily K. Whiting and Ashlyn Thompson, to get help and grow with them into empowered advocates for our kids. Here you’ll find a community of support, encouragement, education and resources, equipping you to navigate your child’s medical complexities ...
…
continue reading
A podcast for parents and families of people living with rare diseases in Ontario. I Care for Rare is a social advocacy campaign, designed to give individuals, families and caregivers living with rare diseases a collective voice for system healthcare AND community support reform.
…
continue reading
CRPS/RSD continues to be ranked higher than any other pain condition known to man, including childbirth and amputation, on the McGill Pain Scale! This poorly understood disease is so brutal it has earned the nickname ”The Suicide Disease”! Awareness is so important in the battle against this invisible illness! CRPS/RSD may be rare, but it is 100% REAL! You don’t have to see it to believe it! CRPS Warriors Foundation is dedicated to raising awareness and proving the undeniable legitimacy of t ...
…
continue reading
A rare disease mom on a mission sharing life’s chaos. In hopes to inspire others going through a tough time.
…
continue reading
This podcast is a "best of" lineup of the top posts on strugglingtothrive.com. All material except the introduction is also available on our website in written format.
…
continue reading
“Speak Up – Kōrerotia” – a radio show centred on human rights issues. Encouraging discussion on human rights issues prevalent in both Canterbury and New Zealand, Speak Up – Kōrerotia offers a forum to promote the issues facing New Zealanders, providing a voice to affected communities. Engaging in conversations around human rights issues in our country, each show covers a different human rights issue with guests from or working with the affected communities. Analysing and asking questions of ...
…
continue reading
This podcast is all about testicular cancer--the survivors, medical researchers, stories from caregivers, those who didn't make it, awareness advocates, and much more. It covers the whole subject with compelling stories about this cancer--which, though rare in general, is the number one cancer hitting young men. "Don't Give Up" fighting this wildfire-like form of cancer, because great strides have been made and with more awareness and effort, we can BEAT testicular cancer for good.
…
continue reading
Disclaimer: Opinions shared in this podcast may not reflect the opinions of Catalyst Pharmaceuticals, Inc. Let’s talk about rare diseases. The LEMS Aware Podcast lets you hear directly from people in the Lambert-Eaton myasthenic syndrome (LEMS) and other rare disease communities on topics that matter. We talk with patients and caregivers who want to share more than their story – they want to ignite conversations about LEMS and common rare disease experiences and needs. Join us as we talk abo ...
…
continue reading
Seth Godin is a thought leader in the marketing and business world. In this rare live recording, hear Seth as he guides thirty entrepreneurs through a workshop exploring how they can build and run their dream business.
…
continue reading
Lori Rohlinger is a former pastor's wife who has endured losing her husband to a rare disease but still remains positive that God has a plan for her widowed life. In her podcast, Lori shares her real life experiences from grief to joy and all the in-between. She is a single parent raising four children and learning what it looks like to move forward without the love of her life. Lori loves to share how good and faithful God has been to her, even in the midst of her Beautifully Broken life.
…
continue reading
In the world of news, headlines are essential, but providing in-depth analysis of news and current affairs became rare. We analyze the news and simplify complex geopolitical realities of the Middle East and wider Muslim world. To help you make sense of it all, join our host Sami Zeidan.
…
continue reading
Primary sclerosing cholangitis (PSC) is a rare disease that affects the bile ducts inside and outside of the liver. There is no cure, and no treatments exist to slow the progression of PSC. This podcast, moderated by Niall McKay, explores the latest research and knowledge about PSC: from patient stories, to the latest research updates from PSC experts, to collaborations that are necessary to find better treatments and a cure, this podcast has it all! PSC Partners Seeking a Cure is a nonprofi ...
…
continue reading
Holy Yes Podcast is the home for creative, faith-based entrepreneurs raising a hand to deepen their relationship with God, blaze forward in their wealth identity, and build a legacy of impact. Hosted by wealth activator, business wizard, creative director, Victoria Washington brings forward The Holy Yes Podcast. She’s the Founder of The House of Wealth Embodiment®, a global community and brand that has rapidly become the go-to space for entrepreneurs to develop their wealth identity, deepen ...
…
continue reading
Learn English as you read and listen to news and feature stories about health, medical and lifestyle topics.
…
continue reading
André and Velrita are doing this podcast, to raise awareness of the realities of being a carer for a loved one and living with a rare misunderstood chronic condition. Who knew that becoming a mother for the first time, twenty-seven years ago would be one of the best experiences of her life? no matter how rewarding it was, she knew it would not be easy especially as a single mother. So, imagine one day, when your child is only four years and has a stroke. Without any warning, overnight both o ...
…
continue reading
The Village Global podcast takes you inside the world of venture capital and technology, featuring enlightening interviews with entrepreneurs, investors and tech industry leaders. Learn more at www.villageglobal.vc.
…
continue reading
Mrs Moneypenny, beloved Financial Times columnist, and her editor interview the world's most successful people in business, media, arts, entertainment, finance, academia and politics. Like Sir David Attenborough, the intrepid duo ventures to their subjects’ natural habitat. In their quest to figure out how this rare species of homo erectus lives and works they corner plutocrats at Davos parties and hitch a ride with America’s most famous living feminist. Fielding irreverent questions about s ...
…
continue reading
Twenty Something Conversations unearths and explores the trials, tribulations and triumphs of people in their twenties.
…
continue reading
A place we talk about a vast array of raw and real topics concerned with the Muslim woman's experience. From intricacies of identity, marriage and motherhood, to the vast ocean of discussion on mental health and relationships, we aim to delve into it all! Instagram: @hiddenukht_ Email: yourstrulyhiddenukht@gmail.com
…
continue reading
At Factor Care RX, their commitment to individuals with hemophilia is deeply rooted in empathy and understanding. They recognize the unique challenges and obstacles that come with managing this complex condition and approach each interaction with care and compassion. Whether it's assisting with medication access, navigating insurance complexities, or simply providing a listening ear, Factor Care RX is there every step of the way.
…
continue reading
Beyond the Diagnosis is more than a traveling art exhibit. It is a movement to humanize the children who happen to have a rare disease. So much of the work around rare diseases is logical, scientific, and medical. It can be a world without feeling. Using art and artists to introduce and celebrate these children is much more personal and evocative. …
…
continue reading
1
Ep 12 Michael Bender: Financial Hardship Solutions
47:59
47:59
Play later
Play later
Lists
Like
Liked
47:59
Attorney Michael Bender joins us in Ep.12 of CWF Presents CRPS/RSD is Real! All warriors experience financial hardship. Between losing the ability to work, waiting for disability or workers comp outcomes, and medical expenses a silver lining can be hard to find. Michael discusses with Kimberly bankruptcy and other options to relieve some stress and…
…
continue reading
1
Study: Twice-yearly Injections Cut HIV Infections by 100 Percent - July 30, 2024
7:48
7:48
Play later
Play later
Lists
Like
Liked
7:48
By VOA Learning English
…
continue reading
1
Understanding Trauma in Pediatric Care: Insights from Sarah Curry on Fostering Resilience and Compassion
39:48
39:48
Play later
Play later
Lists
Like
Liked
39:48
Discover the transformative power of understanding trauma with the expertly insightful Sarah Curry, communication manager for Cincinnati's Ronald McDonald House and a certified trauma and resilience specialist. Sarah guides us through the complexities of trauma, particularly as it relates to caregiving for children with complex medical needs. Throu…
…
continue reading
1
Researchers: New Blood Tests Help Doctors Identify Alzheimer’s Disease - July 29, 2024
7:45
7:45
Play later
Play later
Lists
Like
Liked
7:45
By VOA Learning English
…
continue reading
In this episode, Claire Parker, a pediatric nurse practitioner, discusses the results of a study that examined the prevalence of anxiety and depression among adolescents with pediatric pulmonary hypertension. The project aimed to incorporate mental health screening into the standard care for PH patients, similar to what is done for cystic fibrosis …
…
continue reading
1
Some Plants Grow for a Long Time to Flower Only Once - July 26, 2024
4:18
4:18
Play later
Play later
Lists
Like
Liked
4:18
By VOA Learning English
…
continue reading
Episode 2 of our International Edition takes us to Australia, "where innovation meets wearability, adaptability, and a profound commitment to global well-being." Angie Poller, a CRPS Warrior of 28 years, has handcrafted a lightweight, wearable hot or cold pack design. Her product is available in Australia and she offers free shipping. Learn more by…
…
continue reading
1
Work, Sleep Well in a Small Place - July 24, 2024
8:31
8:31
Play later
Play later
Lists
Like
Liked
8:31
By VOA Learning English
…
continue reading
The Paris 2024 Olympic and Paralympic Games are being labelled the 'most equitable' and the 'greenest' Games in history. However, as occurs at all major sporting events, human rights violations are taking place too, including France's controversial ban on women athletes wearing the hijab and the unprecedented use of surveillance technologies. Guest…
…
continue reading
1
US Research Farm Raises Pigs to Produce Organs for Humans - July 23, 2024
7:05
7:05
Play later
Play later
Lists
Like
Liked
7:05
By VOA Learning English
…
continue reading
1
Navigating Post-Surgery Challenges Surgeons Don't Understand: Empowering Parents with Pracitcal Strategies
20:40
20:40
Play later
Play later
Lists
Like
Liked
20:40
How do you navigate the daily challenges of your child's post-surgery recovery when the experts can only provide clinical advice? Join us on Empowered by Hope as Emily and Ashlyn share their heartfelt journeys, illustrating the real-world struggles and triumphs of managing a child's medical condition, side effects and challenging realities after su…
…
continue reading
1
Introducing a New Era of Empowered by Hope: Bite-Sized Episodes for Caregivers on the Go
10:09
10:09
Play later
Play later
Lists
Like
Liked
10:09
Ever wish you had a quick, powerful resource to tackle your biggest pediatric caregiving challenges? We promise to make every minute count as we unveil our refreshed, streamlined podcast format designed just for you! Join Ashlyn Thompson and Emily Whiting as they return to Empowered by Hope, eager to share how our bite-sized, focused episodes will …
…
continue reading
Brendan got sick. Jen got sick. Joel got sick. A good time was had by all! The 2024 WSA Convention in Phoenix was a rousing success. Unfortunately the live podcast footage hasn't been delivered yet, so that will be released at a later date. Meanwhile, an exhausted Brendan and Joel do a quick recap of the Convention and look ahead to future episodes…
…
continue reading
Tina Proulx was diagnosed with pulmonary hypertension at the age of 19. She experienced difficulty breathing and chest pain, leading to a diagnosis of chronic thromboembolic pulmonary hypertension (CTEPH), a condition caused by blood clots in the lungs. Tina eventually underwent transplant and celebrated eight years post-transplant, surpassing the …
…
continue reading
1
Ivory Coast Launches First Malaria Vaccine Program - July 18, 2024
4:21
4:21
Play later
Play later
Lists
Like
Liked
4:21
By VOA Learning English
…
continue reading
1
Heat Can Be Good or Bad for Your Garden - July 16, 2024
7:20
7:20
Play later
Play later
Lists
Like
Liked
7:20
By VOA Learning English
…
continue reading
1
Where Is Bird Flu Spreading around the World? - July 15, 2024
6:44
6:44
Play later
Play later
Lists
Like
Liked
6:44
By VOA Learning English
…
continue reading
Marilyn Hanft, a CTEPH patient, shares her experience with the condition. In 2011, she initially mistook her symptoms for asthma but later discovered she had clots in her lungs. Despite her health challenges, she remains determined to live life to the fullest. Hanft discusses her love for sailing and her current plan for writing a book about her sa…
…
continue reading
1
Ep. 11: Marie Aungst's Guide to a Lighter Life
28:41
28:41
Play later
Play later
Lists
Like
Liked
28:41
Kimberly delivers another incredible interview with CWF Presents CRPS/RSD is Real! Ep. 11. Marie Aungst joins us from New York. Marie is a weight loss coach who has personally benefited in her health journey from weight loss. Her desire to inspire and support CRPS warriors shines bright. You can get in touch with Marie by phone: (716) 239-9323 or e…
…
continue reading
1
Man Regains His Voice with the Help of a Rare Medical Operation - July 11, 2024
7:03
7:03
Play later
Play later
Lists
Like
Liked
7:03
By VOA Learning English
…
continue reading
1
Grow Your Own Tea Plants Year-round - July 10, 2024
7:43
7:43
Play later
Play later
Lists
Like
Liked
7:43
By VOA Learning English
…
continue reading
1
What have we learned in the last 6 months?
36:35
36:35
Play later
Play later
Lists
Like
Liked
36:35
We discuss the joys, challenges, and surprises of raising a child with a rare disease every episode. In this conversation, we reflect on what each of us has learned through these discussions, through life “outside the podcast,” and through other people we have met along the way. Without any set plan we wander through resilience, learning not to rea…
…
continue reading
1
Can Resistance Training Keep Us Feeling Young? - July 09, 2024
8:53
8:53
Play later
Play later
Lists
Like
Liked
8:53
By VOA Learning English
…
continue reading
Scott Fleetwood, a former pulmonary hypertension patient from Buffalo, New York, shares his journey with rare diseases. He initially experienced shortness of breath while playing hockey and was later diagnosed with pulmonary hypertension and scleroderma. Scott received a double lung transplant in 2017. He discusses the initial fear he felt upon lea…
…
continue reading
1
Scientists Fear Bird Flu Pandemic Coming - July 04, 2024
6:44
6:44
Play later
Play later
Lists
Like
Liked
6:44
By VOA Learning English
…
continue reading
1
How to Deal Safely with Poison Ivy in the Garden - July 02, 2024
5:19
5:19
Play later
Play later
Lists
Like
Liked
5:19
By VOA Learning English
…
continue reading
1
Ep 37.5 - It's a Convention Podlet with the Gang!
14:19
14:19
Play later
Play later
Lists
Like
Liked
14:19
The time has come! Preparations for the 2024 WSA National Convention in Phoenix are in the final stretch. The gang has just a few minutes to get together, do some last minute chatting, and get ready for the Live Podcast show on Wednesday, July 10th at 4PM! If you come up to any of us and say "Croutons & Hearts," we'll give you an official Starry-Ey…
…
continue reading
In this episode, Dr. Robert Frantz, a cardiologist at the Mayo Clinic, discusses current and upcoming clinical research in pulmonary arterial hypertension (PAH). He emphasizes the low participation rate of PAH patients in clinical trials and encourages patients to consider participating, as it not only benefits themselves but also helps advance med…
…
continue reading
1
38 Years of Testicular Cancer Survivorship: Boston Marathon, A Daughter, Career, and Giving Back
23:02
23:02
Play later
Play later
Lists
Like
Liked
23:02
Jim Hohman had a terrible cough after he ran the 1986 Boston Marathon. He went to the doctor, who also decided to conduct a general physical. That exam saved his life, Jim says, because the doctor found a lump on his testicle. He visited the urologist on Saturday and his orchiectomy surgery on Monday. After a few months, his blood tests showed a po…
…
continue reading
Welcome to our first double-digit episode! Dr. David Pascal joins Kimberly from Cary, North Carolina for our episode milestone. With many years of treating patients and ever-expanding knowledge, Dr. Pascal has mentored countless renowned professionals and developed his signature approach to treatment called "The Pascal Method". This has allowed him…
…
continue reading
By VOA Learning English
…
continue reading
1
Speak Up Kōrerotia - Pūrākau - Māori stories and storytelling
58:29
58:29
Play later
Play later
Lists
Like
Liked
58:29
Guests Tania Cliffe-Tautari and Isla Huia discuss why pūrākau - stories and storytelling - are fundamental to Te Ao Māori, and how they are and might be utilised as tools for empowerment.
…
continue reading
Welcome to our International Podcast! VP of International Relations, Rahma Ithar Hadjal, interviews natural healthcare consultant, Janet Ewens of the UK.By CRPS Warriors Foundation
…
continue reading
Amy Gietzen, a patient diagnosed with systemic scleroderma, shares her journey and experiences living with the disease. She discusses her initial symptoms, the shock of the diagnosis, and the lack of information and resources available at the time. Despite facing numerous challenges, including pulmonary fibrosis and pulmonary arterial hypertension,…
…
continue reading
1
Weight-Loss Options for Children Are Hard To Get - June 24, 2024
9:32
9:32
Play later
Play later
Lists
Like
Liked
9:32
By VOA Learning English
…
continue reading
1
Scientists Study Why Bird Flu Kills Some Animals, Not Others - June 21, 2024
5:25
5:25
Play later
Play later
Lists
Like
Liked
5:25
By VOA Learning English
…
continue reading
Losing a child is heartbreaking. Ashley Genelin lost her son Myles when he was just 3 years old. He was diagnosed with cardiofasciocutaneous syndrome or CFC. They did their best to keep him at home as long as possible, even when caring for Myles was like running an ICU. Make-A-Wish allowed them to take this mini-ICU on the road so that Myles could …
…
continue reading
Alvin Rocha is a nurse care manager and pulmonary hypertension coordinator at Children's Hospital Los Angeles. He manages PH patients from birth to early adulthood. His main goal is to prepare these patients for the transition into the adult world. He is excited about the advancements in therapies and clinical trials and looks forward to attending …
…
continue reading
1
Ep. 9 Possibilities of Quantum Neurology with Dr. Skylar Bakko
52:04
52:04
Play later
Play later
Lists
Like
Liked
52:04
After witnessing his family chiropractor save his mother's life as a child, Dr. Skylar Bakko chose to dedicate his life to helping those suffering from pain and chronic illness. Along with his Doctor of Chiropractic, he completed hours of study on Brain-Based Wellness, including Quantum Neurology, Applied Kinesiology, Developmental Functional Neuro…
…
continue reading
1
Study: Past COVID Infection Could Protect Against Colds - June 13, 2024
4:02
4:02
Play later
Play later
Lists
Like
Liked
4:02
By VOA Learning English
…
continue reading
1
Poorly-paid Healthcare Workers Leaving Africa - June 13, 2024
4:58
4:58
Play later
Play later
Lists
Like
Liked
4:58
By VOA Learning English
…
continue reading
1
Olympic Athletes Turn to Diabetes Technology in Medal Chase - June 12, 2024
5:49
5:49
Play later
Play later
Lists
Like
Liked
5:49
By VOA Learning English
…
continue reading
1
Improve Your Mindset, Improve Your Health - June 12, 2024
8:22
8:22
Play later
Play later
Lists
Like
Liked
8:22
By VOA Learning English
…
continue reading
1
Encore: Secrets of Public Speaking and Oral Communication from Renowned Speaking Coach
42:20
42:20
Play later
Play later
Lists
Like
Liked
42:20
Michael Balaoing, founder of Candlelion, joins Village Global co-founder and partner Ben Casnocha on this episode to discuss: - The importance of the acronym WTF (what’s the feeling?) when you’re giving a presentation. - The four roles that you take on as a speaker: captain, pilot, guide, and game show host. - The five questions to ask when seeking…
…
continue reading
1
Ep 37 - Weekend for Williams Live with Barb Nelson and Tayden Larsen
1:06:22
1:06:22
Play later
Play later
Lists
Like
Liked
1:06:22
Recorded Live on June 1st, Jen and Brendan and joined by Producer Joel and WSA Vice President of Programming Sarah Giddings during their marathon Weekend for Williams fundraiser. The podcast was also part of a POWER HOUR where all donations were doubled thanks to Barb Nelson, the owner of Brinkley's Boutique. Barb joined the gang to talk about all …
…
continue reading
In this episode, Dr. Dunbar Ivy, a pediatric cardiologist at the University of Colorado, discusses the upcoming World Symposium on Pulmonary Hypertension, where experts from around the world will gather to discuss the progress made and future directions. Dr. Ivy highlights the work of the pediatric pulmonary hypertension task force, which aims to d…
…
continue reading
Nola Martin shares her experience with pulmonary arterial hypertension (PAH). Nola describes the physical and mental challenges she faced, including fatigue, weight gain, and the need to ask for help. Nola emphasizes the importance of self-advocacy and fighting for one's own health. She recounts a situation where she had to push her doctor to liste…
…
continue reading
1
It's a Beautiful Life with Kyle Hartfield
41:22
41:22
Play later
Play later
Lists
Like
Liked
41:22
TMS, Transcranial magnetic stimulation, is a non-invasive form of brain stimulation through electromagnetic induction. It has been proven to help with a variety of conditions like depression, anxiety, OCD, addiction, and even autistic children to name a few. Kyle Hartfield, Inland Empire, TMS, shares with co-hosts Kimberly Crgelka and Brittany Summ…
…
continue reading
On this episode we talk to Michelle Fruhschien a mom of two, Noah and Hailey(Jordan Syndrome). The moment she was born, Michelle says she knew it in her bones that something was different about her daughter even though she didn’t start seeing symptoms for another two months. Over the next few months, Michelle spent a lot of her time googling, askin…
…
continue reading
