Talking Rare Disease, But Make It Cute | Ashley Brooks

Talking Rare Disease, But Make It Cute | Ashley Brooks

In this episode, Kerri Fitzgerald speaks with Ashley Brooks about her rare disease journey. Ashley first learned about generalized myasthenia gravis (gMG) during her studies in college and later learned she actually had the chronic autoimmune neuromuscular disorder. After getting diagnosed, she noticed an absence of people who looked like her—a young woman—featured in resources online linked to gMG, so she decided to start Ashley’s Anatomy as a way to shine a light on the condition and provide education and real-world insights on living with gMG.  Key Highlights:  * Hear how Ashley came to understand that her symptoms were not the result of typical collegiate exhaustion, but rather a chronic condition.  * Be inspired by Ashley’s passion and success in creating a space for young people with invisible illnesses to better represent themselves.  * Hear why Ashley was determined to help people better understand rare conditions by framing the discussion in layman’s terms.  * Learn about her brand, Ashley's Anatomy, which seeks to validate the experiences of those living with a rare condition while educating those who may not understand the struggles faced.   00:00 Introduction & Background  00:44 Exhaustion? Or Something Worse...  03:05 Struggling to Reach a Diagnosis  06:39 Creating a Space for Young People With Rare Conditions  09:18 Advocating for a Treatment Plan  12:15 Creating a Community on Social Media  17:30 Advice to Younger Self   18:17 Closing Remarks  Connect with Ashley:  ⁠https://ashleysanatomy.com/blog/⁠ [https://ashleysanatomy.com/blog/]  ⁠https://instagram.com/_ashleysanatomy⁠ [https://instagram.com/_ashleysanatomy]  ⁠https://www.tiktok.com/@_ashleysanatomy⁠ [https://www.tiktok.com/@_ashleysanatomy]  ⁠https://www.youtube.com/channel/UCXrzesB_OXb68gftMqms7iQ⁠ [https://www.youtube.com/channel/UCXrzesB_OXb68gftMqms7iQ]  ⁠https://www.facebook.com/AshleysAnatomy/⁠ [https://www.facebook.com/AshleysAnatomy/]  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]

Our Missions Align – Why We Partnered With the HypoPARA Association | Hypopara Series: Part 7

As part of this video series celebrating Hypoparathyroidism Awareness Day, Hero Philanthropy made a $2500 donation to the HypoPARAthyroidism Association. Patty and Michele, both advocates and heroes, sit down with My Hero 360’s Chris Ciraulo to discuss the ways in which the two outlets’ missions align. Both seek to spotlight the stories of individuals living with chronic rare health conditions, with the hoping of offering community and inspiration and to improve patient quality of life and outcomes. 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.

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.