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BRAVE BUTTERFLY BARI
My Struggles Are Your Guidebook
Navigating hypoparathyroidism, clinical trials, and adversity—honestly, not censored.
My lived experience becomes your roadmap. Through honest storytelling, I share what I've learned about managing hypoparathyroidism, participating in clinical trials, and transforming personal struggle into meaningful advocacy. Your journey doesn't have to start from zero.
World Hypoparathyroidism Awareness Day
June 1, 2026
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The future of hypoparathyroidism advocacy starts now
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🦋 Warrior Wednesday Weekly celebrates courage, community, and advocacy. This newsletter shares Bari's personal hypoparathyroidism journey and is not medical advice. Please consult your doctor for medical guidance. Call 911 in emergencies.
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These athletes teach me that a setback isn't the end of the story—it's just another chapter. Like them, I choose to be brave, to get back up, and to keep pushing forward, one yard at a time. My son Harrison's work in sports media and my daughter Drew's wellness practice are extensions of this same spirit: rising stronger after every fall.
Together, we rise stronger.
My Story
As a columnist for Hypoparathyroidism News, I believe that adversity is an opportunity for greatness. My life is proof that life is too short to be anything but great. Read my latest column: Tatum's Return: Injury Shows Comeback Better Than Setback
I'm a proud mother to two incredible children who are my reasons why I fight each day. My daughter Drew, 26, is a Chiropractor at Lake Point Wellness in Acworth, Georgia. My son Harrison, 24, is a sports director at KALB in Central Louisiana.
There is no one else I want by my side in the roller coaster of life.
Through writing, speaking, and community building, I transform personal adversity into meaningful advocacy for those living with hypoparathyroidism.
True Storytelling
My story of strength, resilience, and truth
Columnist
Writing powerful columns for Hypoparathyroidism News, sharing my journey and insights to help others feel less alone.
Bari proves that anything is possible. You can live life fully with the right support.
Hypoparathyroidism doesn't define my limits. Every adventure, every moment of joy is proof that life is too short to be anything but great.
Ice Skating at Wollman Rink
February 2026 at Wollman Rink in Central Park, NY. Embracing winter joy and movement on the iconic ice rink in the heart of New York City. With hypoparathyroidism, every physical activity is a victory. I refuse to let my diagnosis limit my adventures.
"Where courage takes flight"
Skydiving: Courage Takes Flight
For my 40th birthday - defying gravity and fear. This moment represents the ultimate expression of my philosophy: life is too short to be anything but great. Hypoparathyroidism doesn't define my limits.
Dancing on wheels at Rockefeller Center in NYC and spreading joy. This video captures the pure happiness of living life to the fullest, embracing movement and fun despite any challenges.
"Where courage takes flight"
Mountain Hiking in Vail: Reaching New Heights
Standing tall in the mountains of Vail with arms raised in triumph. Every hike, every summit reached is a testament to resilience and the power of refusing to let hypoparathyroidism hold me back.
"Where courage takes flight"
Mountain Adventure in Breckenridge: Living Fully
Overlooking pristine alpine lakes and majestic peaks in Breckenridge. These moments of natural beauty remind me why I advocate so fiercely - so others can experience the freedom and joy of living their best life.
Rock Climbing at Terranea Resort: Conquering Heights
Standing triumphantly on a rocky cliff at Terranea Resort in California with arms spread wide. This moment captures the essence of my journey - defying limitations and reaching new heights despite any obstacles. Every climb is a metaphor for resilience.
"Where courage takes flight"
Golden Gate Bridge: My Greatest Achievement
Standing triumphantly at the Golden Gate Bridge after biking across it with my son Harrison - this is the biggest accomplishment of my life. This moment represents everything I've fought for: proving that hypoparathyroidism doesn't define my limits, and creating unforgettable memories with my family. This is what living fully looks like.
Fall 2025 at Giants Stadium - wearing my favorite Kyle Juszczyk puffer vest and celebrating life at the game. Living my passion for sports with loved ones. I embrace every moment of joy and excitement that comes my way.
Horseback Riding at Gateway Canyons: Desert Adventures
Riding through stunning desert landscapes with majestic mountains at Gateway Canyons in Colorado. These adventures remind me that life is meant to be lived fully - every trail, every moment of freedom is a celebration of resilience and the power of refusing to let hypoparathyroidism hold me back.
"Where courage takes flight"
These moments prove that hypoparathyroidism doesn't define our limits. Life is too short to be anything but great.
Managing Hypoparathyroidism: Live Your Best Life
"Adversity is an opportunity for greatness, and life is too short to be anything but great."
— Bari Vapnek, Hypoparathyroidism Advocate
🧠
Understanding
Learn about hypoparathyroidism symptoms, related mineral deficiencies, and what your body is telling you.
Explore Symptoms
💊
Medication & Treatment
Calculate corrected calcium levels and understand your medication regimen for optimal calcium management.
Calculate Now
🥗
Nutrition
Discover calcium-rich foods, meal plans, and recipes designed specifically for hypoparathyroidism management.
View Guide
🏔️
Lifestyle & Wellness
Embrace movement, adventure, and joy. See how to live your best life despite hypoparathyroidism.
Discover Stories
⚠️
Emergency Preparedness
Know the warning signs and emergency symptoms. Be prepared with our comprehensive emergency checklist.
Discover what's in season right now! Nature provides essential vitamins and minerals that support your wellness journey alongside your medication and exercise routine.
Physicians Recognize My Passion for Science & Advocacy
Testimonials from the physicians who have been instrumental in my medical journey and advocacy work
Dr. Mannstadt
Endocrinologist
Hypoparathyroidism Specialist
Thank you so much for sharing your wish to contribute to science in such a deeply meaningful way. I am truly touched by your generosity and the spirit behind this; this speaks volumes about your dedication to advancing understanding of hypoparathyroidism and helping others.
Dr. Robert K. shares his professional perspective on hypoparathyroidism advocacy and patient-centered care. His commitment to understanding the human side of medicine has been instrumental in advancing patient support and medical research.
Working with Bari as Patient #1 in the TransCon PTH trial has been remarkable. Her insights and advocacy have significantly contributed to advancing patient care and clinical understanding.
Real stories from people living with hypoparathyroidism and how advocacy, community, and knowledge have transformed their journeys.
"Bari's columns helped me understand my diagnosis. I felt so alone until I found her advocacy work."
After being diagnosed with hypoparathyroidism at 24, Sarah felt isolated and overwhelmed. Reading Bari's columns about managing the condition, navigating clinical trials, and building community gave her the courage to join support groups and eventually become an advocate herself. 'Bari showed me that my struggle could become my strength,' Sarah says.
Sarah M.
28 • California
Post-surgical Hypoparathyroidism
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What Our Partners Say
Partner Testimonials
Hear from the organizations we collaborate with about the impact of our partnership and shared commitment to advancing hypoparathyroidism awareness and patient care.
"Bari's columns have become essential reading for our community. Her authentic voice, combined with her deep understanding of hypoparathyroidism, creates a bridge between patients and medical professionals. She doesn't just share information—she transforms it into hope and actionable guidance that empowers our readers to take control of their health."
Editor-in-Chief
Hypoparathyroidism News
All Partner Testimonials
"Bari's columns have become essential reading for our community. Her authentic voice, combined with her deep understanding of hypoparathyroidism, creates a bridge between patients and medical professionals. She doesn't just share information—she transforms it into hope and actionable guidance that empowers our readers to take control of their health."
Editor-in-Chief
Hypoparathyroidism News
"Bari's advocacy work has been instrumental in connecting us with the patient community. Her participation in clinical trials as Patient #1 demonstrated courage and commitment that inspired others to join research efforts. Her voice amplifies the importance of patient-centered drug development and helps us understand the real-world impact of our work."
Patient Advocacy Director
Ascendis Pharma
"Bari exemplifies the power of patient advocacy in advancing medical knowledge. Her collaboration with our members in research initiatives and her commitment to translating complex endocrinology into accessible information strengthens our mission to improve hormone-related health outcomes globally."
Director of Patient Programs
Endocrine Society
"Bari's advocacy work demonstrates the transformative impact of patient-led initiatives. She has become a model for how individuals living with rare diseases can create meaningful change through storytelling, community building, and strategic partnerships. Her dedication inspires our entire coalition."
Executive Director
Rare Disease Coalition
"Working with Bari has enriched our research in ways we didn't anticipate. Her insights into patient experiences inform our clinical studies, and her ability to communicate research findings to the broader community accelerates the translation of our discoveries into real-world benefits for patients."
Research Director
Hypoparathyroidism Research Institute
"Bari's work embodies the spirit of global patient advocacy. She has shown us that one person's courage to share their story can create a movement. Her commitment to supporting newly diagnosed patients and building inclusive communities sets a powerful example for advocates worldwide."
International Coordinator
Global Patient Advocacy Network
The Power of Partnership
Our collaborations extend far beyond individual organizations. Together, we create a network of support that amplifies our message, accelerates research, and most importantly, improves the lives of patients living with hypoparathyroidism. Every partnership strengthens our collective mission: to transform adversity into advocacy and hope into action.
True Storytelling
Stories about resilience, obstacles, and adversity
Make a Contribution
Your donation supports hypoparathyroidism research, advocacy, and community building.
Grateful Dead's "Touch of Gray" became the anthem for my journey. These words captured everything I needed to hear during my darkest moments—that resilience isn't about perfection, it's about persistence. You can live. You can thrive. You can be brave despite hypoparathyroidism.
New videos featuring my advocacy journey, wellness tips, and community stories coming regularly
Latest News from Hypoparathyroidism Community
Stay informed with the latest research, treatment updates, and patient stories from Hypoparathyroidism News
News22 hours ago
Yorvipath (palopegteriparatide) for hypoparathyroidism
What is Yorvipath for hypoparathyroidism? Yorvipath (palopegteriparatide) is an approved daily hormone replacement therapy used to help manage blood calcium levels in adults with hypoparathyroidism. I...
Brave Butterfly: A Hypoparathyroidism Journey - a Column by Bari VapnekYesterday
Reflections on the first anniversary of ‘Brave Butterfly’
Soft morning light spills through my windows as I power on my laptop. A gentle glow envelops the quiet room. I think about where I was a year ago, when hope felt uncertain and struggle was heavy. Apri...
New hormone replacement treatment for hypoparathyroidism is safe: Trial
Single doses of canvuparatide, an injectable hormone replacement treatment being developed by MBX Biosciences for chronic hypoparathyroidism, appeared to be safe in healthy adults and were long-acting...
New weekly therapy moves toward Phase 3 for hypoparathyroidism
MBX Biosciences is advancing its experimental therapy canvuparatide (MBX 2109) toward a Phase 3 trial in adults with chronic hypoparathyroidism, following a successful End-of-Phase 2 meeting with the ...
Brave Butterfly: A Hypoparathyroidism Journey - a Column by Bari VapnekMar 18
My PATTH with hypoparathyroidism is unknown, but my purpose is clear
Editor’s note: This story includes a mention of suicide. If you or someone you know needs help, the national suicide and crisis lifeline in the U.S. is available by calling or texting 988. There is al...
Brave Butterfly: A Hypoparathyroidism Journey - a Column by Bari VapnekMar 11
As Tatum’s return from injury shows, a comeback is better than a setback
My world teetered as a calcium crash struck in 2016, leaving me breathless and confused. It was a scary time for my family, especially for my son Harrison, who was starting high school. It was also a ...
Learn more about hypoparathyroidism, my advocacy work, and how you can get involved
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Shape the Future by Joining Our Patient Advisory Board
Do you want to make a real difference? Join our Patient Advisory Board and help shape the future of hypoparathyroidism advocacy. Your lived experience and perspective are invaluable.
The information provided on this website is for educational and informational purposes only and should not be considered medical advice. I am not a healthcare provider. Always consult with your physician or qualified healthcare professional before making any changes to your diet, medication, or treatment plan. The content shared here is based on my personal experience with hypoparathyroidism and is not a substitute for professional medical diagnosis, treatment, or advice. If you have concerns about your health, please seek guidance from a qualified healthcare provider.
