This Advocacy Group Is Changing Rare Disease Care | Hypopara Series: Part 6

This Advocacy Group Is Changing Rare Disease Care | Hypopara Series: Part 6

In this special episode, Kerri Fitzgerald sits down with Patty Keating and Michele Rayes, the leadership team behind the HypoPARAthryoidism Association, to discuss and define what it means to have hypoparathyroidism, giving listeners a glimpse into the daily struggles and symptoms of individuals with hypoparathyroidism. The two women share recent wins for the Association and share how listeners can get involved and support the Association. Connect with the HypoPARA Association: https://www.hypopara.org/ [https://www.hypopara.org/ ] https://www.youtube.com/channel/UC8fpei7liF73LFflvU6zZHw [https://www.youtube.com/channel/UC8fpei7liF73LFflvU6zZHw ] https://www.instagram.com/hypoparaassoc/ [https://www.instagram.com/hypoparaassoc/ ] https://www.linkedin.com/company/hypoparathyroidism-association/ [https://www.linkedin.com/company/hypoparathyroidism-association/ ] About My Hero 360: At My Hero 360, we honor, celebrate, and connect heroes worldwide. By sharing their stories, we aim to inspire and provide hope for humanity. Follow us to hear more incredible stories of unsung heroes who make a difference in the world. Support My Hero 360: https://myhero360.com/ [https://myhero360.com/ ]https://www.instagram.com/myhero.360/ [https://www.instagram.com/myhero.360/ ] https://www.tiktok.com/@myhero.360 [https://www.tiktok.com/@myhero.360 ]

Fighting to Fix the Broken Healthcare System | Hypopara Series: Part 5

In part 2 of our conversation with Michele Rayes, she shares how legislative change is a critical part of supporting and protecting people living with a rare disease. She discusses legislative bills that the HypoPARAthyroidism Association supports and provides an educational lens into how to be a good patient advocate. Michele explains specific pieces of legislation she is fighting for, like responsible AI integration into insurance claim reviews and denials, and shares why she is so passionate about advocating for yourself and others. Watch part 1 of Michele's interview: https://youtu.be/Qzp6hyhC3_U [https://youtu.be/Qzp6hyhC3_U] Key Highlights: • Hear how the HypoPARA Association is working to ensure the patient's voice is included in drug development, clinical education, and research. • Be inspired by Michele’s passion for improving the future of rare disease diagnosis and treatment. • Hear why Michele encourages patients to better understand their health and advocate for their needs. • Learn about Michele’s efforts to advance legislation regarding PBM reform and responsible incorporation of AI into the healthcare system. 00:00 Recap from Part 1 of Patty’s interview 00:44 A Happy Accident: Finding the HypoPARA Association 08:07 Promising Genetic Testing Breakthroughs 12:02 Advocacy on Capitol Hill 14:57 Understanding the System in Order to Change It 18:34 Connect With the HypoPARA Association 19:31 Advice to Younger Self 22:10 Closing Remarks Connect with the HypoPARA Association: https://www.hypopara.org/ [https://www.hypopara.org/] https://www.youtube.com/channel/UC8fpei7liF73LFflvU6zZHw [https://www.youtube.com/channel/UC8fpei7liF73LFflvU6zZHw] https://www.instagram.com/hypoparaassoc/ [https://www.instagram.com/hypoparaassoc/] https://www.linkedin.com/company/hypoparathyroidism-association/ [https://www.linkedin.com/company/hypoparathyroidism-association/] About My Hero 360: At My Hero 360, we honor, celebrate, and connect heroes worldwide. By sharing their stories, we aim to inspire and provide hope for humanity. Follow us to hear more incredible stories of unsung heroes who make a difference in the world. Support My Hero 360: https://myhero360.com/ [https://myhero360.com/] https://www.instagram.com/myhero.360/ [https://www.instagram.com/myhero.360/] https://www.tiktok.com/@myhero.360 [https://www.tiktok.com/@myhero.360] Subscribe to this channel for more inspirational stories.

A Cancer Diagnosis Leads to a Chronic Condition | Hypopara Series: Part 4

In this episode, Kerri Fitzgerald speaks with Michele Rayes about her journey from one life-changing diagnosis to another. After being diagnosed with thyroid cancer in her early 20s, the surgery that helped to address the cancer subsequently resulted in a diagnosis of hypoparathyroidism, a rare, chronic disease for which there is no cure. Michele speaks in-depth about the physical and mental toll that both health conditions had on her. She also discusses the clinical trial she took part in which helped to bring a new treatment option, palopegteriparatide, to hypoparathyroidism patients everywhere. Key Highlights: • Hear how Michele was diagnosed with thyroid cancer at 23 after being told she was “too young” for cancer by doctors. • Be inspired by the support system Michele’s family offers, including how her daughter was inspired to pursue a specific career path after witnessing her mother’s struggles. • Hear why Michele took part in a clinical trial that helped to bring the first-ever hypoparathyroidism treatment option to market. • Learn about the FDA approval of palopegteriparatide and why it was a major milestone for the hypoparathyroidism community. 00:00 Introduction & Background 02:14 The Diagnosis That Changed Her Life Forever 04:23 Taking 60 Pills Per Day to Address the Condition 11:01 Witnessing an FDA-Approved Treatment Become Available 14:02 A Clinical Trial Experience 17:06 The Need to Keep Fighting for More Treatment Options 21:55 We’re Not Done! Watch Part 2 Connect with the HypoPARA Association: ⁠⁠https://www.hypopara.org/⁠⁠ [https://www.hypopara.org/] ⁠⁠https://www.youtube.com/channel/UC8fpei7liF73LFflvU6zZHw⁠⁠ [https://www.youtube.com/channel/UC8fpei7liF73LFflvU6zZHw] ⁠⁠https://www.instagram.com/hypoparaassoc/⁠⁠ [https://www.instagram.com/hypoparaassoc/] ⁠⁠https://www.linkedin.com/company/hypoparathyroidism-association/⁠⁠ [https://www.linkedin.com/company/hypoparathyroidism-association/] About My Hero 360: At My Hero 360, we honor, celebrate, and connect heroes worldwide. By sharing their stories, we aim to inspire and provide hope for humanity. Follow us to hear more incredible stories of unsung heroes who make a difference in the world. Support My Hero 360: ⁠⁠https://myhero360.com/⁠⁠ [https://myhero360.com/] ⁠⁠https://www.instagram.com/myhero.360/⁠⁠ [https://www.instagram.com/myhero.360/] ⁠⁠https://www.tiktok.com/@myhero.360⁠⁠ [https://www.tiktok.com/@myhero.360] Subscribe to this channel for more inspirational stories.

Patients Make Progress Possible | Hypopara Series: Part 3

In part 2 of our conversation with Patty Keating, we dive deep into how hypoparathyroidism can affect the whole patient. Patty shares vulnerable moments that highlight symptoms such as brain fog, emphasizing how truly debilitating and isolating it can feel. The conversation also discusses treatment options, specifically how the HypoPARAthyroidism Association has helped to bring an FDA-approved option to market. Patty continues to be a voice for patients with hypoparathyroidism everywhere through her podcast, HypoPARA Unscripted. Watch part 1 of Patty’s interview: https://youtu.be/NZd0N4ztgkA [https://youtu.be/NZd0N4ztgkA]Key Highlights: • Hear how the HypoPARA Association is helping to bring patient voices to the center of care discussions. • Be inspired by Patty’s outlook on life of “we’ll figure it out.” • Hear why symptoms that appear “invisible” can be debilitating, and why the whole-patient care approach is important. • Learn about the work that was done to help bring a treatment option to market for hypoparathyroidism. 00:00 Recap from Part 1 of Patty’s interview 00:39 The First-Ever Treatment Approved for Hypoparathyroidism 8:11 Understanding “Invisible Illness” 12:43 Debilitating Brain Fog, A Personal Experience 16:48 How to Connect with The HypoPARA Association 17:45 Advice to Younger Self 18:35 Closing Remarks Connect with the HypoPARA Association: https://www.hypopara.org/ [https://www.hypopara.org/] https://www.youtube.com/channel/UC8fpei7liF73LFflvU6zZHw [https://www.youtube.com/channel/UC8fpei7liF73LFflvU6zZHw] https://www.instagram.com/hypoparaassoc/ [https://www.instagram.com/hypoparaassoc/] https://www.linkedin.com/company/hypoparathyroidism-association/ [https://www.linkedin.com/company/hypoparathyroidism-association/] About My Hero 360: At My Hero 360, we honor, celebrate, and connect heroes worldwide. By sharing their stories, we aim to inspire and provide hope for humanity. Follow us to hear more incredible stories of unsung heroes who make a difference in the world. Support My Hero 360: https://myhero360.com/ [https://myhero360.com/] https://www.instagram.com/myhero.360/ [https://www.instagram.com/myhero.360/] https://www.tiktok.com/@myhero.360 [https://www.tiktok.com/@myhero.360]Subscribe to this channel for more inspirational stories.

Went in for Surgery, Left With a Lifelong Disease | Hypopara Series: Part 2

In this episode, Kerri Fitzgerald speaks with Patty Keating about her experience as a post-surgical hypoparathyroidism patient. What was supposed to be surgery to address complex tumors on her thyroid became what felt like a life sentence with a chronic health condition. When her journey toward understanding her rare disease took a dangerous turn, resulting in a heart attack, Patty took charge of her life and turned her life sentence into her life’s work. Now the Executive Director of the HypoPARAthyroidism Association, Patty has dedicated herself to elevating the patient voice to spread education and awareness about hypoparathyroidism. Key Highlights: • Hear how Patty Keating developed hypoparathyroidism after surgery that was meant to remove her parathyroids. • Be inspired by how Patty came to understand her new normal and used her leadership skills to advance education and advocacy for this patient population. • Hear why Patty is so passionate about elevating the patient voice in order to improve health outcomes. • Learn about how the HypoPARA Association was a driving force behind the first FDA-approved treatment for this condition. 00:00 Introduction & Background 06:45 Misconceptions: When Treatment Isn’t a Cure 10:10 Turning a Life Sentence into a Life's Mission to Help Others 13:33 The Patient Reality: Beyond the Lab Results 15:45 Helping Clinicians Understand the Whole Patient 17:19 Patient Voices Drive Change on a National Level 19:46 We’re Not Done! Watch Part 2 Connect with the HypoPARA Association: https://www.hypopara.org/ [https://www.hypopara.org/] https://www.youtube.com/channel/UC8fpei7liF73LFflvU6zZHw [https://www.youtube.com/channel/UC8fpei7liF73LFflvU6zZHw] https://www.instagram.com/hypoparaassoc/ [https://www.instagram.com/hypoparaassoc/] https://www.linkedin.com/company/hypoparathyroidism-association/ [https://www.linkedin.com/company/hypoparathyroidism-association/] About My Hero 360: At My Hero 360, we honor, celebrate, and connect heroes worldwide. By sharing their stories, we aim to inspire and provide hope for humanity. Follow us to hear more incredible stories of unsung heroes who make a difference in the world. Support My Hero 360: https://myhero360.com/ [https://myhero360.com/] https://www.instagram.com/myhero.360/ [https://www.instagram.com/myhero.360/] https://www.tiktok.com/@myhero.360 [https://www.tiktok.com/@myhero.360]Subscribe to this channel for more inspirational stories.