show episodes
 
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 ...
 
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Living With PSC

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Living With PSC

PSC Partners Seeking a Cure

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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 ...
 
If you or someone you love is affected by a rare disease, you likely have more questions than answers. That’s why we’re here. Rare Disease Connection, and our additional resources on RareDisease.com and YourDNA.com, brings together the people whose expertise can explain what you’re facing. From diagnosis, to prognosis, to treatment options, all the way to questions like “Who do I talk to? Where are the people who’ve been through this before?”. We have the answers, direct from the experts and ...
 
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show series
 
Dale Dedrick is a retired orthopedic surgeon who was diagnosed with lupus and pulmonary hypertension. In this episode, Dale, former United States Paralympic Equestrian Team member, discusses an infection that resulted in a partial amputation of her foot and why it's important "to get back on the horse." Learn more about pulmonary hypertension trial…
 
PSC 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 PSC experts, to collaborations that are necessary to fi…
 
Roslyn Rivera, RN, BSN is the Fetal and Pediatric Cardiology Outpatient Nurse Coordinator at the UCLA Children’s Heart Center. Since 2013, Roslyn has volunteered with Camp del Corazon, a nonprofit organization offering year-round activities for children and young adults with CHD. She holds the role of Nurse Coordinator and as an Advisor for their a…
 
In this episode, pulmonologist and PH clinician from the Mayo Clinic, Hilary DuBrock, MD discusses portopulmonary hypertension, a type of pulmonary arterial hypertension that develops in the setting of portal hypertension and liver disease. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @pha…
 
In this episode, pulmonologist and PH clinician from the Mayo Clinic, Hilary DuBrock, MD reflects on the impact the COVID-19 pandemic has had on her clinical pulmonary hypertension practice both in the outpatient and the inpatient setting. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaw…
 
In this episode, pulmonary hypertension patient, Becky Mack discusses navigating her rare disease diagnosis right after losing her husband to cancer. She also shares her story of adoption and motherhood. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.g…
 
In this episode, pulmonary hypertension patient, Cat Macera, discusses her diagnosis that happened during Covid and how her background in the medical field helped her become a strong advocate for herself and others. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: w…
 
In this episode, PHA Australia CEO, Annie Whitaker, gives a raw account of her connection to pulmonary Hypertension as carer to her son Tim, who lost the PH War in 2006. Annie discusses how one promise to her son has helped her work through grief. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on soci…
 
In this episode, pulmonary Hypertension patient, Stacey McCarthy discusses her 13 year journey with PH and her struggles as a single mom. Now over a decade later, Stacey is a coordinator for the UCSD PH Support Group, is involved in a long-term study with the NIH and is a patient advocate for Janssen. Learn more about pulmonary hypertension trials …
 
In this episode, attorney Katie Sample discusses losing her husband to complications following a bone-marrow transplant. Two years later, while still in mourning, this single-mother from Long Beach, California was diagnosed with Ideopathic Pulmonary Hypertension. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. F…
 
PSC 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 PSC experts, to collaborations that are necessary to fi…
 
In this episode, former pulmonary hypertension patient, Evelyn Melendez discusses her recent lung transplant surgery and her road to recovery. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware Share your story: info@phaware.com…
 
In this episode, pulmonary hypertension patient and @PHatStanford #RaceAgainstPH 2022 Pediatric PH Courage Award recipient, Paige Zils (10) and her mother Lindsey Doolan, discuss Paige's PH diagnosis and the importance of a great care team. Don't miss the 22nd Annual Race Against PH at November 22 hosted by the Vera Moulton Wall Center for Pulmonar…
 
In this episode, pulmonary hypertension patient and Stanford's Race Against PH 2022 Adult PH Courage Award recipient, Yolanda Villalon, discusses her devastating diagnosis and the impact on finding the right support group. Don't miss the 22nd Annual Race Against PH at November 22 hosted by the Vera Moulton Wall Center for Pulmonary Vascular Disease…
 
In this episode, pulmonary hypertension patient and Stanford's Race Against PH 2021 Adult PH Courage Award recipient, Graydon Cawein, discusses his long road to his rare disease diagnosis, survivor's guilt, and the importance of finding an expert treatment center. Don't miss the 22nd Annual Race Against PH at November 22 hosted by the Vera Moulton …
 
Roslyn Rivera, RN, BSN is the Fetal and Pediatric Cardiology Outpatient Nurse Coordinator at the UCLA Children’s Heart Center. Since 2013, Roslyn has volunteered with Camp del Corazon, a nonprofit organization offering year-round activities for children and young adults with CHD. She holds the role of Nurse Coordinator and as an Advisor for their a…
 
CTEPH patient, Karri Reynolds spent years bouncing from specialist to specialist due to her failing health. In this episode, she details how self-advocating led and a desperate facebook post led to her being diagnosed at age 40 (by a pediatric cardiologist)! Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never …
 
As we continue our Back To School & Transition Series, I am excited to welcome Kristen Corrie, Owner of Sweet Abilities, Life Skills Job Coach, Special Education Teacher and employees Carla & Bret. Kristen Corrie taught transition age young adults at Lakeland School for 13 years and helped prep them for life after school. As a special education tea…
 
As we continue our Back To School & Transition Series 📚 I am excited to welcome Dr. Meagan Orsag, Director of Rural Programs at the Center on Disability and Development at Texas A&M University and Angela Griffin, Program Coordinator for iGROW. 🌱 About iGROW : The "I Generate Rural Opportunities for Work" (iGROW) Project is a transition-focused mode…
 
In this episode, board certified pediatrician and mother to a young child with idiopathic PAH, Chandani DeZure, MD, shares advice & tips for parents navigating this rare diagnosis and offers a unique perspective from both the patient/caregiver and physician side. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. N…
 
PSC 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 PSC experts, to collaborations that are necessary to fi…
 
As we continue our Back To School & Transition Series 📚 I am excited to welcome Evelyna Castro, Adaptive Trainer/Instructor & Makeup Artist/Designer. Evelyna has has had a passion for fitness and the arts practically her whole life, though she does not come from a very performing arts oriented family. Evelyna grew up in San Jose, CA. with her four …
 
In this episode, Chandani DeZure, MD, a board certified pediatrician and mother to a young child with idiopathic PAH, shares the heart-wrenching journey of her son's rare disease diagnosis during the height of the COVID crisis. She details physical and emotional toll it has taking on her son and family. Learn more about pulmonary hypertension trial…
 
As we continue our Back To School & Transition Series 📚 I am excited to welcome James Collins, Associate Professor of Special Education / Director of UW-W LIFE. Dr. James Collins is a school psychologist, board certified behavior analyst, and an associate professor of special education. His professional and research interests include postsecondary …
 
As we continue our Back To School & Transition Series 📚 I am excited to welcome Robin Miller, Director of Employment Programs, TAMU CDD. Robin Miller is Director of Employment Programs at Texas A&M's Center on Disability and Development, where she coordinates the center's Work-Based Learning and Transition Capacity-Building projects. Prior to joini…
 
As we continue our Back To School & Transition Series 📚 I am excited to welcome Tara Tuchel, Speech/Language Pathologist and Founder of Autism Little Learners. Tara is a speech/language pathologist who has been teaching young autistic children for over 2 decades. She has had the unique position to run her own communication-based classroom and team …
 
As we continue our Back To School & Transition Series 📚 I am excited to welcome Dede & Peter Dankelson, Owners & Creators of Pete's Diary. Dede and Peter Dankelson are co-owners of Pete’s Diary. Dede is the managing partner, author, and content creator. Peter is the musician and speaker. Over 700k social media followers have found inspiration and m…
 
As we continue our Back To School & Transition Series 📚 I am excited to welcome Tracy Glass, PATHS Program Coordinator, Heather Dulas, Dr. / Program Director, Aggie ACHIEVE and Eric Roberts, Director of Postsecondary Education. 📚 Tracy is currently the PATHS Program Coordinator working with students of all abilities to help them achieve their emplo…
 
As we continue our Back To School & Transition Series 📚 I am excited to welcome Scott Perkins, Director of Admissions. Scott Perkins is the Director of Admissions for Shepherds College (SC), a fully accredited post-secondary vocational training school designed specifically for students with intellectual and developmental disabilities in Union Grove…
 
Pulmonary Hypertension patient Shannon O'Donnell was diagnosed with PH at age six. Shannon discusses the importance of PH kids getting to attend summer camps geared to children impacted with rare disease, including Paul and Joanne Newman's The Hole In the Wall Gang Camp and Serious Fun Network. Learn more about pulmonary hypertension trials at www.…
 
As we continue our Back To School & Transition Series 📚 I am excited to welcome Jill Urbane, The Mentor Mom. Jill Urbane, aka, The Mentor Mom, is a Parent Educator and Social Worker who has been working with families in their homes for nearly thirty years. The bulk of her work has been as an Early Childhood Interventionist working with parents of t…
 
As we continue our Back To School & Transition Series 📚 I am excited to welcome Lisa Dickie, Owner, Dickie's Cooking School. Lisa opened Dickie's Cooking School in 2017 with a goal to teach people how to cook delicious and healthy meals for themselves. She is passionate that cooking classes should be accessible to everyone. Since then she has devel…
 
As we continue our Back To School & Transition Series 📚 I am excited to welcome Sarah Sweeney, MSW. Sarah Sweeney is 37 years old, and has her masters degree in social work. She likes to get to know people and hear their stories and really understand what makes them who they are. Currently, Sarah is in a transitional phase of life right now and som…
 
As we continue our Back To School & Transition Series 📚 I am excited to welcome Tylia L. Flores, Author and disability activist, radio station co-owner. Tylia L. Flores is a twenty-seven-year-old born with Splastic Dysplasia Cerebral Palsy. Despite her condition that affects her mobility, she does not allow it to affect her will and determination t…
 
As we continue our Back To School & Transition Series, I am excited to welcome Chris Blezien. Chris has mild Cerebral Palsy and is 40 years old. He has been actively involved in the transition process since the beginning. Which started in school where he participated in his IEP meetings since grade school. When he graduated he used the department o…
 
In this episode, pulmonary hypertension patient, Larissa Domenichelli discusses her rare disease diagnosis and why she feels like a 73 year old trapped in a 37 year old's body. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twi…
 
As we kick off our Back To School & Transition Series 📚 I am excited to welcome to Friday’s show, Mackenzie Edinger, Owner of Inclusion Coffee Company. Mackenzie opened Inclusion Coffee Company after years of working with Special Education students and adults, and realized that she wanted to do something outside of a school building. The Inclusion …
 
As we kick off our Back To School & Transition Series 📚 I am excited to welcome to Friday’s show, Cindy Folk, Author & Entrepreneur. Cindy Folk was born and raised in Regina, Saskatchewan, Canada. She attended the University of Regina, majoring in finance, but has always had a creative side that was bubbling just below the surface. Northern Escape …
 
It is so important as a special needs parent to surround yourself with positive energy and uplifting voices. Finding those that make you smile and feel supported. Sometimes finding those individuals isn't so easy. As many can't understand the journey we are on... Listen in as we have a quick chat about finding those uplifting voices and protecting …
 
Pulmonary hypertension patient, Tina Gardner had never heard of PH when her mom was diagnosed in 1994. 28 years later, she's all too familiar with the disease after she, her nephew, her niece as well as her great nephew have been diagnosed with this rare disease. In this episode, Tina talks about the importance of support groups, especially ones li…
 
Entitlement vs Eligibility Services ... What the heck does that mean? Take 10 minutes today to listen in and learn more about the tranistion process. Having a clear understanding of this before your young adult with special needs starts the transition process is crucial to set you and your family up for success. In addition, I am so excited about o…
 
Let's be honest friends trying to sleep at the hospital can be maddening. Here are a few helpful tips from our personal experiences sleeping at the hospital over the last 2 1/2 decades. Also, super excited to be back after a month and a half of doing the hospital hustle with my son. Below are some of the resources I mentioned in the episode. Thanks…
 
Pulmonary hypertension patient, Nicole Hogan was diagnosed in 2018. Four years later she is still grappling with her rare disease prognosis. PH has changed her life. Now she advocates for herself and the community to help make PH history. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with…
 
In this episode, CTEPH patient, Carol Templeton details her complex surgery, called pulmonary thromboendarterectomy (PTE), which involves the removal of chronic clots from the lung vessel and the impact it had on her as the adoptive mom to her 18 month old daughter. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials…
 
In this episode, pulmonary hypertension patient, Kaitlyn Thompson describes coming to terms with the difficult reality of not being able to carry a pregnancy due to her PH, as well as detailing an emotional recent near death experience. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with t…
 
In this episode, pulmonary hypertension patient, Erica Hutchison discusses her long road to diagnosis which included multiple doctors and cardiologists telling her that her PH symptoms and panic attacks my just be "all in her head." Now, 10+ years post-diagnosis, Erica has a passion for art and music and is working on her Doctorate of Music in comp…
 
In this episode, Canadian pulmonary hypertension patient, Stacy Physick was diagnosed with PH in 2011. She immediately got her affairs in order, believing she only expected to survive 1-3 years. Now, 10 years post-diagnosis she shares her journey and her conscious decision to lead a normal life. Learn more about pulmonary hypertension trials at www…
 
In this episode, Italian pulmonary hypertension patient, Maria Simionato discusses her diagnosis and how a complications following a menstrual period that lasted for over a month led her to be listed for a double-lung transplant surgery. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with …
 
In this episode, pulmonary hypertension patient, Gary Bruce, discusses how meeting and marrying another PH patient changed the trajectory of his life and how she inspires him to battle his rare disease. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us…
 
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