Latest Redis Podcast Episodes
How We Got Here: Abortion in Wisconsin Since 1849
WPR Reports - January 30, 2024 22:47 - 28 minutes ★★★★★ - 61 ratingsA challenge to Wisconsin’s abortion ban could already be making its way to the state Supreme Court. The law was first passed in 1849 and went back into effect last […]
Coming Soon – How We Got Here: Abortion in Wisconsin Since 1849
WPR Reports - January 30, 2024 22:43 - 2 minutes ★★★★★ - 61 ratingsA challenge to Wisconsin’s abortion ban could already be making its way to the state Supreme Court. The law was first passed in 1849 and went back into effect last […]
Episode 453 - PHenomenal Hope 2023
I'm Aware That I'm Rare: the phaware® podcast - January 29, 2024 14:00 - 12 minutes ★★★★★ - 14 ratingsIn this episode, Drs. Patricia George and Harrison "Hap" Farber from Team PHenomenal Hope discuss takeaways and learning from PHenomenal Hope 2023. This symposium offered a combination of oral presentations, expert panel discussions, and poster sessions in an environment that encourages collabor...
Episode 23 with Brittany Parke
HC&U - January 26, 2024 10:47 - 45 minutes ★★★★★ - 18 ratingsIn this episode, we speak with Brittany Parke, mom of Grayson, who lives with Homocystinuria, Cobalamin G. We discuss why advocacy and research for Hydroxocobalamin is so important for the cobalamin community. We also share our low protein recipe of the month in Lindsey's Low Pro Bitessss. It...
Soundtrack of Silence - Love, Loss, and a Playlist for Life with Neurofibromatosis Type 2 (NF2) Patient Advocate - Matt Hay
Once Upon A Gene - January 25, 2024 12:00 - 43 minutes ★★★★★ - 251 ratingsONCE 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 thri...
Episode 452 - Lia Barros, NP
I'm Aware That I'm Rare: the phaware® podcast - January 22, 2024 16:51 - 14 minutes ★★★★★ - 14 ratingsLia Barros, a nurse practitioner at the University of Washington, discusses the role of nurse practitioners in caring for patients with pulmonary hypertension. She emphasizes the importance of nurse practitioners in meeting the unique needs of patients with pulmonary hypertension and suggests t...
Beyond the Crossroads- Rebuilding and Reclaiming Identity After Sacrificing Careers for Caregiving with Emily Crawford
Once Upon A Gene - January 18, 2024 12:00 - 34 minutes ★★★★★ - 251 ratingsONCE 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 an...
Meet Dr. Stephen Rossi: A Conversation with the PSC Partners Chief Scientific Officer
Living With PSC - January 16, 2024 22:04 - 37 minutes ★★★★★ - 25 ratingsPSC Partners Seeking a Cure is pleased to present Living With PSC, a podcast moderated by Niall McKay. Each month, this podcast explores the latest research and knowledge about primary sclerosing cholangitis (PSC), a rare liver disease. From patient stories, to the latest research updates from P...
Episode 451 - Sam Rayner, MD
I'm Aware That I'm Rare: the phaware® podcast - January 15, 2024 16:00 - 9 minutes ★★★★★ - 14 ratingsDr. Sam Rayner is an assistant professor and pulmonary hypertension specialist at the University of Washington. In this episode, he discusses the different ways physicians can get involved in pulmonary hypertension research. He explains that he is a physician scientist, dividing his time betwee...
A Courageous Gift - The Power of Brain and Tissue Donation in Rare Disease Research with Anne Rugari
Once Upon A Gene - January 11, 2024 12:00 - 41 minutes ★★★★★ - 251 ratingsONCE UPON A GENE - EPISODE 214 A Courageous Gift - The Power of Brain and Tissue Donation in Rare Disease Research with Anne Rugari Anne Rugari is an advocating powerhouse, an author of two children's books, a mom, and two of her children have passed away from Krabbe disease. She joins us to sha...
Episode 450 - Harm Bogaard, MD
I'm Aware That I'm Rare: the phaware® podcast - January 08, 2024 16:00 - 11 minutes ★★★★★ - 14 ratingsHarm Bogaard, MD, Ph.D., FAHA is a pulmonologist at the Amsterdam UMC. In this episode, he discusses the role of genetic testing in the treatment of patients with pulmonary hypertension at its role in clinical research. Learn more about pulmonary hypertension trials at www.phaware.global/clin...
Finding Strength In Every Step
Once Upon A Gene - January 08, 2024 12:00 - 17 minutes ★★★★★ - 251 ratingsAs 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...
Episode 449 - Sharon Tokonitz
I'm Aware That I'm Rare: the phaware® podcast - December 28, 2023 16:00 - 5 minutes ★★★★★ - 14 ratingsSix years ago, Canadian pulmonary hypertension patient Sharon Tokonitz was rushed to the hospital with a massive bilateral unprovoked pulmonary embolism. She discusses her road to recovery from being bedridden to returning to an active life thanks to pulmonary rehab. Learn more about pulmona...
Episode 448 - Saire Gonzalez, RN and Kimberly Hudson, RN
I'm Aware That I'm Rare: the phaware® podcast - December 21, 2023 17:07 - 10 minutes ★★★★★ - 14 ratingsKimberly Hudson and Saire Gonzalez are registered nurses with CVS Specialty Pharmacy who work with patients with pulmonary hypertension (PH). They provide support, education, and guidance to patients who are newly diagnosed with PH and help them navigate their drug therapies and lifestyle chang...
Pain Points on the Disorder Channel with Daniel DeFabio and Bo Bigelow -This Festivus, Let the Airing of Grievances Begin
Once Upon A Gene - December 21, 2023 12:00 - 11 minutes ★★★★★ - 251 ratingsONCE UPON A GENE - EPISODE 212 Special pop up episode from our friends Daniel DeFabio and Bo Bigelow from the Disorder Channel - Pain Points https://www.rarediseasefilmfestival.com/ www.thedisordercollection.com https://www.facebook.com/rarediseasefilmfestival https://www.instagram.com/disorderr...
Episode 447 - Raymond L. Benza, MD
I'm Aware That I'm Rare: the phaware® podcast - December 18, 2023 16:00 - 5 minutes ★★★★★ - 14 ratingsIn this episode, Dr. Raymond Benza, a Professor of Medicine at the Icahn School of Medicine at Mount Sinai, discusses dual therapy in the treatment of pulmonary hypertension (PH) through the concept of risk stratification. Learn more about pulmonary hypertension trials at www.phaware.global...
Session 9 - The Unpardonable Sin (Saved for Eternity)
Rediscover the Gospel - December 14, 2023 23:30 - 29 minutes ★★★★★ - 2 ratingsOBJECTIONS AGAINST ETERNAL SALVATION (PART VII) Matthew 18:21–35 (The Unmerciful Servant) Matthew 18:21–35 (NKJV)21 Then Peter came to Him and said, “Lord, how often shall my brother sin against me, and I forgive him? Up to seven times?”22 Jesus said to him, “I don’t say to you, up to s...
The Juggle is Real - Navigating Parenthood and Rare Disease Leadership with Kim Nye and Mike Graglia
Once Upon A Gene - December 14, 2023 12:00 - 49 minutes ★★★★★ - 251 ratingsONCE UPON A GENE - EPISODE 211 The Juggle is Real - Navigating Parenthood and Rare Disease Leadership with Kim Nye and Mike Graglia Rare disease parents and front line advocates, Kim Nye and Mike Graglia, join this episode for a discussion about the unseen struggles of rare disease parenthood an...
Episode 446 - Nancy Halnon, MD
I'm Aware That I'm Rare: the phaware® podcast - December 11, 2023 16:00 - 18 minutes ★★★★★ - 14 ratingsIn this episode, pediatric cardiologist, Nancy Halnon, MD, discusses treatment goals for pulmonary hypertension, the various routes of administration and the importance of using combination therapy to improve survival. Learn more about pulmonary hypertension trials at www.phaware.global/clin...
GeneDX - A Genetic Diagnosis Matters with Gay Grossman and Paul Kruszka
Once Upon A Gene - December 08, 2023 12:00 - 45 minutes ★★★★★ - 251 ratingsONCE UPON A GENE - EPISODE 210 GeneDX - A Genetic Diagnosis Matters with Gay Grossman and Paul Kruszka If you're passionate about the evolving landscape of genetic testing, this episode is for you. Gay Grossman, Patient Advocacy & Engagement Lead, and Paul Kruszka, Chief Medical Officer, are a w...
Session 8 - Abiding in the Vine (Saved for Eternity)
Rediscover the Gospel - December 04, 2023 23:48 - 31 minutes ★★★★★ - 2 ratingsOBJECTIONS AGAINST ETERNAL SALVATION (PART VI) John 15:1–6 (Abiding in the Vine) John 15:1–6 (NKJV)1 I am the true vine, and My Father is the vinedresser.2 Every branch in Me that doesn’t bear fruit He takes away; and every branch that bears fruit He prunes, that it may bear more fruit....
Episode 445 - Angela Bates, MD
I'm Aware That I'm Rare: the phaware® podcast - December 04, 2023 16:00 - 12 minutes ★★★★★ - 14 ratingsIn this episode, Angela Bates, MD from Stollery Children’s Hospital, discusses the importance of incorporating quality of life into the management strategies for pediatric pulmonary hypertension patients. Dr. Bates also talks about the importance of allowing patients to engage in activities...
A Leap of Faith - Rare Disease Moms on the Bittersweet Joy of New Babies
Once Upon A Gene - November 30, 2023 12:00 - 40 minutes ★★★★★ - 251 ratingsONCE UPON A GENE - EPISODE 209 A Leap of Faith - Rare Disease Moms on the Bittersweet Joy of New Babies I'm joined by two new, rare moms, Emily and Katie, to discuss the topic of having additional children after you've had a child with a rare disease. EPISODE HIGHLIGHTS How did your experienc...
Session 7 - The Ten Virgins (Saved for Eternity)
Rediscover the Gospel - November 29, 2023 23:39 - 29 minutes ★★★★★ - 2 ratingsOBJECTIONS AGAINST ETERNAL SALVATION (PART V) Matthew 25:1–13 (The Ten Virgins) Matthew 25:1–13 (NKJV)1 Then the Kingdom of Heaven shall be likened to ten virgins who took their lamps and went out to meet the bridegroom.2 Now five of them were wise, and five were foolish.3 Those who wer...
Episode 444 - Vinicio de Jesus Perez, MD
I'm Aware That I'm Rare: the phaware® podcast - November 27, 2023 16:00 - 17 minutes ★★★★★ - 14 ratingsIn this episode, Vinicio de Jesus Perez, MD discusses some of the most recent clinical developments in the field of pulmonary hypertension, highlighting new and ongoing clinical trials that are of great interest to the medical community as well as caregivers and patients looking forward to novel...
Episode 443 - Peter Leary, MD
I'm Aware That I'm Rare: the phaware® podcast - November 20, 2023 16:00 - 11 minutes ★★★★★ - 14 ratingsIn this episode, Peter Leary, MD talks about factors that might lead to over-treatment, under-treatment, or "just-right" treatment and emphasizes that guidelines are important but there is no "one-size fits all" approach to treatment of pulmonary hypertension. Peter Leary is the director of t...
Session 6 - The Book of Life (Saved for Eternity)
Rediscover the Gospel - November 19, 2023 06:02 - 29 minutes ★★★★★ - 2 ratings1 Timothy 4:1–5 (Departing from the Faith) 1 Timothy 4:1–5 (NKJV)1 Now the Spirit expressly says that in latter times some will depart from the faith, giving heed to deceiving spirits and doctrines of demons,2 speaking lies in hypocrisy, having their own conscience seared with a hot iro...
Breaking Barriers in Brain Health with Tracy Dixon-Salazar, PhD
Once Upon A Gene - November 16, 2023 12:00 - 52 minutes ★★★★★ - 251 ratingsONCE UPON A GENE - EPISODE 207 Breaking Barriers in Brain Health with Tracy Dixon-Salazar, PhD For Epilepsy Awareness Month, I am joined by Tracy Dixon-Salazar, a rad scientist-mom and patient advocate. Her adult daughter Savannah was diagnosed with LGS as a child and in this episode, Tracy shar...
Episode 442 - Sanjay Mehta, MD
I'm Aware That I'm Rare: the phaware® podcast - November 13, 2023 16:00 - 27 minutes ★★★★★ - 14 ratingsIn this episode, PHA Canada Board Director, Sanjay Mehta, MD discusses the recently updated 2022 ESC/ERS Guidelines for the diagnosis and treatment of pulmonary hypertension, the gaps in understanding and the reasons why. Learn more about pulmonary hypertension trials at www.phaware.global/...
Policy as a Pathway - Advocating for Rare Disease, Cri Du Chat, Disability and Palliative Care with Lindsey Topping - Schuetz
Once Upon A Gene - November 09, 2023 12:00 - 44 minutes ★★★★★ - 251 ratingsONCE UPON A GENE - EPISODE 205 Policy as a Pathway - Advocating for Rare Disease, Cri Du Chat, Disability and Palliative Care with Lindsey Topping-Schuetz Lindsey Topping-Schuetz is a parent to seven-year-old Owen, who has cri-du-chat syndrome, also known as 5p-. Lindsey focuses her advocacy wor...
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