In this episode of Patient Innovations, Rashmi and Colleen explore one of the most complex and often misunderstood areas of healthcare: rare disease. While each condition may be considered uncommon, the lived experience is anything but rare for those affected. For many patients, it means navigating daily uncertainty, evolving symptoms, and a long and often frustrating search for answers.

This conversation brings rare disease into focus through lived experience, clinical reality, and emerging innovation—highlighting both the gaps in today’s system and the opportunities ahead.

We hear from three powerful perspectives:

Christine Von Raesfeld, rare disease patient advocate working at the intersection of patient experience, AI, and digital health, shares her personal journey navigating complex, overlapping conditions. She reflects on the emotional and physical toll of living without clear answers, and how that experience has shaped her work in advancing patient-centered data use, privacy, and engagement.

Dr. Nancy Cuan, internal medicine physician at Stanford, offers the clinical lens on caring for patients with complex, multi-system conditions. She speaks to the challenges of diagnosis when symptoms don’t fit neatly into traditional pathways, and how care models are evolving to better support patients living with uncertainty.

Pete Kane, innovator in precision medicine and multi-omics, brings a forward-looking perspective on how advances in biological data and technology are beginning to uncover patterns that traditional diagnostics often miss—opening the door to more personalized, precise care for rare and complex conditions.

Together, this episode explores rare disease through the lenses of the patient, the clinician, and the innovator—connecting lived experience, clinical complexity, and the future of what’s possible in healthcare.

#PatientInnovations #RareDisease #CancerAwareness #PatientVoices #HealthcareInnovation #EarlyDetection #HealthEquity #AIinHealthcare #HealthcareMN

In this episode of Patient Innovations, Rashmi and Shannon dive into one of the most overlooked challenges in healthcare: rare disease detection, focusing on nasopharyngeal carcinoma (NPC), sometimes called nasal cancer. NPC forms deep in the upper throat behind the nose, and its early symptoms—persistent congestion, nosebleeds, ear fullness, hearing changes, or headaches—can feel minor and easily dismissed. Yet for many patients, these subtle signs lead to delayed diagnosis, fragmented care, and life-altering consequences. This conversation grounds NPC in lived experience, clinical insight, and innovation—highlighting where delay happens and how we can do better.

The episode brings together three powerful perspectives:

Michael Arulfo, Chief AI Officer and CTO at Cadre, shares his personal journey with NPC—from early symptoms that were easy to overlook to navigating diagnosis and treatment. His story reflects the emotional toll of uncertainty, moments of feeling unheard, and the importance of persistence and patient advocacy when something doesn’t feel right.

Dr. Amy Anne Lassig, head and neck surgeon at Hennepin Healthcare, offers clinical clarity on why NPC is often diagnosed late. She explains how its location makes early detection difficult, how symptoms overlap with more common conditions, and how risk factors like Epstein-Barr virus can inform clinical suspicion. She also shares how clinicians approach treatment and the challenges of navigating rare cancers within complex care systems.

Dan Que Pham, co-founder and CEO of Oncodea, highlights innovation in early cancer detection. She discusses how advances in blood-based diagnostics, nanophotonics, and AI are working to identify cancer earlier, reduce delays, and expand access to timely, life-saving care.

Key takeaways from the conversation include:

Rare diseases like NPC are often missed because early symptoms appear common and non-specific.

Delays in diagnosis are shaped by both clinical complexity and system-level gaps in awareness and pathways.

There is no one-size-fits-all journey; patient advocacy and persistence play a critical role in getting answers.

Clinicians must balance probability with possibility, especially when symptoms persist without resolution.

Innovation in early detection has the potential to significantly improve outcomes and reduce disparities.

Listening to patient stories is essential to improving recognition, reducing delay, and saving lives.

Links & Resources:

Nasopharyngeal Carcinoma & Rare Cancer

American Cancer Society: https://www.cancer.org

National Cancer Institute: https://www.cancer.gov

Head & Neck Cancer Care

Hennepin Healthcare: https://www.hennepinhealthcare.org

Innovation in Early Detection

Oncodea: https://oncodea.com

#PatientInnovations #RareDisease #NasopharyngealCarcinoma #CancerAwareness #PatientVoices #HealthcareInnovation #EarlyDetection #HealthEquity #AIinHealthcare #HealthcareMN

In this episode of Patient Innovations, Rashmi and Mary dive into one of the most debated and misunderstood topics in women’s health: Menopause and Hormone Replacement Therapy (MRT/HRT). Menopause is a natural life transition, yet for many women it brings disruptive symptoms, limited access to care, and widespread misinformation. This conversation grounds menopause and hormone therapy in lived experience, clinical science, and innovation—cutting through fear and confusion.

The episode brings together three powerful perspectives:

Karen Bannon, spiritual care leader and educator, shares her personal menopause journey—from unexpected symptoms and their impact on daily life to navigating decisions around hormone therapy. Her story reflects the emotional toll of feeling unheard and the importance of informed, patient-centered care.

Dr. Jewel Kling, Professor of Medicine and nationally recognized menopause expert at Mayo Clinic, offers clinical clarity on what’s happening biologically during perimenopause and menopause. She unpacks how evidence around hormone therapy has evolved, addresses common misconceptions, and explains how clinicians personalize treatment based on timing, risk, and individual goals.

Ashlie Beiter, founding partner and VP of Marketing at Winona, highlights innovation in menopause care. She discusses how telemedicine and education-first models are expanding access, reducing stigma, and helping women navigate hormone therapy with confidence and trust.

Key takeaways from the conversation include:

1. Menopause is a major life transition—not a niche issue—and symptoms can significantly affect quality of life.
2. Hormone therapy requires nuance, not fear, with newer research clarifying safety, timing, and personalization.
3. There is no one-size-fits-all approach; informed, individualized care is essential.
4. Access to accurate information and trained clinicians remains a gap, one that innovative care models are helping to close.
5. Listening to women’s stories is critical to improving care and normalizing menopause conversations.

Links & Resources:

Menopause & Hormone Therapy

The Menopause Society | Homepage: https://www.menopause.org

Choosing a Healthcare Practitioner | The Menopause Society: https://www.menopause.org/for-women/choosing-a-healthcare-practitioner

Mayo Clinic — Menopause & Hormone Therapy: https://www.mayoclinic.org

Female Sexual Health

Prosayla | Female Sexual Health Education: https://www.prosayla.com

Related Podcast

Read. Talk. Grow. Podcast — Guides at Mayo Clinic: https://readtalkgrow.mayoclinic.org

Innovation in Care

Winona — Menopause Care & Education: https://bywinona.com

#PatientInnovations #Menopause #HormoneReplacementTherapy #WomensHealth...

In this episode of the Patient Innovations Podcast, Rashmi Kandwal and Mary MacCarthy explore one of the most complex and underrecognized conditions affecting millions of women: chronic pelvic pain. Defined as pain in the lower abdomen or pelvis lasting longer than six months, chronic pelvic pain can stem from a wide range of causes — from uterine dysfunction and neuropathic pain to hormonal and mood-related conditions. Because the condition is multifaceted, effective treatment almost always requires an integrated, multidisciplinary approach.

The conversation begins with patient guest Kaleigh Karlen, a high school science teacher from Denver whose personal journey highlights the day-to-day realities of navigating symptoms, stigma, delayed diagnosis, and fragmented care. Kaleigh shares what has helped her most — including pelvic floor therapy, electrical therapy, and lifestyle changes talks about Beating Endo, a book that helped her understand the link between endometriosis, inflammation, and diet. Her story offers a candid look at how CPP affects mental health, work, relationships, and identity, and the hope that emerges when patients finally feel heard.

The clinical perspective comes from Dr. Kaitlin Baily, a Doctor of Physical Therapy specializing in pelvic health. Dr. Baily explains why chronic pelvic pain is so difficult to treat and underscores how many of her patients experience meaningful improvement through evidence-based pelvic rehab. She dispels common misconceptions, emphasizes the role of consistent PT, and outlines why multidisciplinary care is essential for long-term recovery.

The episode closes with an innovation-forward discussion featuring Dr. Yingchun Zhang, Co-founder and President of HillMed and Professor of Biomedical Engineering at the University of Miami. Dr. Zhang introduces HillMed’s EMG imaging system, which produces a clear and comprehensive map of muscles and nerves to pinpoint optimal treatment and injection sites. This precision mapping is designed to support better outcomes, faster recovery, and more comfortable patient experiences, and reflects how patient feedback continues to shape HillMed’s research and design.

Together, these three perspectives paint a comprehensive picture of a condition that is too often misunderstood and undertreated — and they spotlight the hope, progress, and innovation emerging in this space.

#ChronicPelvicPain #PatientInnovations #HealthcareMN #PelvicPain #PublicHealth #ChronicIllness #HealthEquity #PatientStories #HealthcareInnovation #Resilience

What is Long COVID—and why does it persist for some people but not others? Why do symptoms vary so widely—from fatigue and brain fog to shortness of breath and heart palpitations? And how are clinicians and public health leaders working to better understand and support those affected?

In this episode of Patient Innovations, Rashmi and Mary kick off the new season diving into one of the most complex health challenges to emerge in recent years—Long COVID, a condition with no known standard of care and a growing need for awareness, research, and compassion.

Our guests bring deeply personal and professional perspectives to this evolving condition:

• Senator Lindsey Port, Minnesota State Senator, shares her lived experience navigating life, work, and treatment with Long COVID—and the struggles she’s faced with insurance coverage and care access.
• Dr. Ruby Tam, physician with the ME/CFS Clinic, runs a free clinic that offers a clinical perspective on what she’s seeing among patients, how her team helps them manage symptoms, and why treating Long COVID remains such a challenge.
• Kate Murray, from the Minnesota Department of Health, discusses one of the nation’s first statewide public health initiatives focused on Long COVID research and awareness—and the power of collaboration in driving progress.

Long COVID is real—and it’s life-altering for many.

While symptoms vary, the most common include fatigue, brain fog, shortness of breath, and post-exertional malaise. For some, recovery is slow and unpredictable.

Be your own champion.

Patients often face skepticism or delayed diagnosis. Listen to your body, document your symptoms, and connect with clinicians who understand post-viral conditions. If one provider isn’t listening—find another, and then another.

Find your community.

Join care and support groups to learn, connect, and navigate insurance or access challenges. Long COVID remains widely misunderstood and under diagnosed—but community can help bridge those gaps.

Certain groups are more affected.

Women, Hispanic and Latino communities, older adults, and those with underlying health conditions are at higher risk. Stressful living conditions can also worsen symptoms, as stress often manifests as inflammation.

Innovation and collaboration are key.

Minnesota’s public health initiatives and clinical partnerships are leading the way in building awareness, research, and resources for those living with Long COVID. There’s a long road ahead, but progress is happening—join the movement and access available support.

• Minnesota Department of Health — Long COVID Resources: https://www.health.state.mn.us/diseases/longcovid
• CDC Long COVID Overview: https://www.cdc.gov/coronavirus/2019-ncov/long-term-effects
• ME/CFS Clinic Information: https://www.mecfsclinicmn.org

#LongCOVID #PatientInnovations #HealthcareMN #PostCOVIDCare #PublicHealth #ChronicIllness #HealthEquity #PatientStories #HealthcareInnovation #Resilience

In this episode of Patient Innovations, co-hosts Mary MacCarthy and Rashmi Kandwal explore Multiple Sclerosis (MS)—a complex neurological disease that affects nearly 3 million people globally, including over 1 million Americans. MS disproportionately impacts women, and studies show higher prevalence in northern states like Minnesota, which has the highest rates in the country.

Guests include:

• Mary Johnson, MS patient and advocate
• Dr. Jessica Stulc, Director of MS Treatment & Research, Minneapolis Clinic of Neurology
• Kathleen O’Donnell, President, Upper Midwest Chapter, National MS Society

Together, they shed light on early symptoms, lived experiences, the current state of MS research, and the power of advocacy, partnerships, and community in creating hope for those impacted by MS.

In this powerful episode of Patient Innovations, co-hosts Mary MacCarthy and Rashmi Kandwal go beyond stats and symptoms to explore the lived experience of spinal cord injury—and the groundbreaking technologies transforming recovery.

Nearly 18,000 people in the U.S. are diagnosed with a spinal cord injury each year. Today’s episode features two voices at the forefront: a hockey player's unshakable will and a scientist's drive to innovate.

Featured guests:

Jack Jablonski – Former Minnesota hockey standout and current LA Kings digital media specialist. Jack shares how his life changed after a 2011 spinal cord injury—and how he’s advancing recovery through his personal journey and the Jack Jablonski Foundation.

Dr. Parag Gad – CEO and Co-Founder of SpineX, Dr. Gad explains how his team’s non-invasive neuromodulation therapies (like SCONE™) are helping patients regain function—and what FDA Breakthrough Device designation means for the future of care.

In this episode, you’ll hear about:

• Living with and training through paralysis
• How neuromodulation is redefining recovery
• Jack’s mission to help others BEL13VE
• The hope that drives patients and innovators forward

Want to collaborate or sponsor? Email rashmi@healthcare.mn.

Next up: Multiple Sclerosis—closing the gap in care.

Support spinal cord injury research through the Jack Jablonski Foundation. Every donation fuels progress toward life-changing breakthroughs.

#SpinalCordInjury #Neurotech #JackJablonski #PatientStories #ParalysisRecovery #HealthcareInnovation #SCI #SpineX #PatientInnovations #HealthcareMN #BEL13VE

In this spring episode of Patient Innovations, co-hosts Mary MacCarthy and Rashmi Kandwal explore the vital role heart valves play in keeping us alive—and what happens when they don’t work as they should. With 2.5% of the U.S. population affected by heart valve disease and 40,000 babies born each year with congenital heart defects, the need for innovation is more urgent than ever.

Featured guests:

• Kris Bauerschmidt, entrepreneur and medical device leader, shares his journey receiving a mechanical heart valve and what life is like post-surgery.
• Dr. Maan Jokhadar, Cardiologist at Mayo Clinic, explains how heart valve care has evolved, when to repair vs. replace, and why anticoagulants like Warfarin are still necessary.
• Dr. Mayra Guerrero, Mayo Clinic Interventional Cardiologist and board member of the Heart Valve Society, discusses global collaboration in research and what innovations give her hope.

In this episode you will hear about:

• Living with a mechanical valve
• Evolving heart valve treatments
• Research priorities and future tech
• Why heart health starts with awareness

Have ideas on collaboration or want to sponsor Patient Innovations? Reach out to rashmi@healthcare.mn.

Next up: spinal cord injuries—featuring a Minnesota hockey legend's powerful recovery story.

#HeartValveHealth #Cardiology #PatientStories #HealthcareInnovation #MayoClinic #HeartValveSociety #PatientInnovations #HealthcareMN