Migraine Lyfebulb Ambassadors: Connecting Patients Like Me

This post introduces you to migraine Lyfebulb ambassadors and the patients like me that it connects. I am a migraine Lyfebulb ambassador and had the opportunity to go to one of their workshops prior to COVID-19 in New York City.  It has taken me close to a year to write about it but I’ve reflected on it often. It was one of those trips and experiences that I walked away saying, “That was SO meaningful and I’m proud to be a part of it.” I met incredible patients like me and have continued to cheer them on virtually since our meeting.

Lyfebulb

Lyfebulb’s mission is to reduce the burden of chronic disease through the power of the patient. They connect patients like me along with their caretakers to share experiences, raise awareness and improve the quality of our lives. The workshop I attended did all of those things. The disease areas that they work in are transplantation, chronic kidney disease, diabetes, IBD, MS, psoriasis, migraine, cancer, chronic cough, mental health, and substance use disorders.

Founder Karin Hehenberger

Initially, I was extremely impressed with Karin. Her resume reads as: she received her MD and Ph.D. degrees from the Karolinska Institute and did her post-doctoral fellowship as a JDRF stipend recipient at the Joslin Diabetes Center, Harvard Medical School. Her chronic illness story revolves around Type 1 Diabetes. She received a kidney transplant that saved her life and a pancreas transplant that made it worth living again. Being insulin-independent has transformed her life and she is succeeding in changing more lives with her work.

Karin believes that the industry desperately needs more patient insights. She would like to see more patients invited to sit at the table and that’s exactly what she did. She brought together a group of migraine bloggers, influencers, caretakers, advocates, and patients like me to her table. I am in awe and inspired by how she is turning her life into the purpose with Lyfebulb.

Community Activities

Individuals learn in a plethora of ways. Both in-person and virtually, the Lyfebulb Community is always engaged. Lyfebulb creates multiple ways for the chronic illness community to engage with each other through…

• Live events
• Panel discussions
• Digital engagement products
• Blogs
• Social media
• Workshops
• Interviews
• User testing
• Surveys
• Research/insight mapping

Patients Like Me

At our workshop, I connected with patients like me and their care partners.  No one in the room felt alone in their migraine journey. “Lyfebulb believes that including patients and their care partners at the beginning of the innovation cycle is the best way to get to the solutions required to market at scale.” First, we discussed pain points and insights in the migraine community. Then, we brainstormed in all different directions.

We tried to solve the challenging problems which come with chronic diseases.  It felt like sitting in a room with strangers and by the end we were hugging and I missed these people as I flew home. By connecting with patients like me and caregivers, we were different yet the same and above all, wanting to do something about migraine. 2 weeks later my school shut down and life as we all knew it screeched to a halt.

Post Workshop

Then, I watched my fellow migraine warriors live through a pandemic (and still are) while facing our chronic illnesses head-on. Doctor’s appointments changed, therapy changed, accessibility to everything changed. I watched New York City, the place I had been just a few weeks before (and was still beaming from) empty and struggling.

I wanted to write about this experience for so long. But honestly, I’ve had trouble getting my thoughts around our round table discussion and how much changed. In reality, I feel bonded with these people in a way I could have never expected. To this day (almost a full year later) I still have not been to another in-person migraine event. I haven’t hugged any patients like me and we all need a hug!

Over this time, I cheered on an engagement, a pregnancy announcement, and all of us evolving to the current situation. I’m so proud of these Lyfebulb ambassadors and to be part of such a powerful group! I felt heard, I felt seen, and virtually, I have continued to feel connected.

Migraine Lyfebulb Ambassadors

Pamela BeautyandtheMigraineBest

“My time in New York was incredible! I had been anticipating my trip to NYC for the Lyfebulb migraine workshop for weeks but wasn’t totally sure what to expect. Nathan (my oldest son) wasn’t thrilled about me leaving and said, ‘Mommy you wouldn’t be going unless it was really important right?” What happened in that room was one of the coolest things I have ever gotten to do and definitely very important. We sat in a beautiful conference room with the Lyfebulb team and we were truly HEARD.

We all shared openly, connected deeply with each other, and came up with real things and ideas that can make deep, impactful changes for the entire migraine community. I am so excited and empowered to keep advocating for migraine. Sharing our journey with chronic migraine disease may not always be easy, but it is so important. Had I not started my blog years ago and began to share about my life with migraine, I would not have had a place at the table. I am so grateful to everyone at Lyfebulb for bringing us to NYC and giving us the opportunity to be together and make a difference for our community. I can’t wait for what’s next!”

Emily Modern Migraine Mama

“The 8 hours that was spent in NYC at Lyfebulb with the other chronic migraine ambassadors was life-changing for me.  Over the past few years, I have felt so alone and isolated because of this disease—feeling like I have constantly had to legitimize my pain to the outside world. But this workshop changed me—For the first time in a long time, I felt HEARD, respected, and a real sense of community.  Sitting with other chronic warriors I have never felt more at home!”

Migraine Patient Caretakers

Audrey and her Boyfriend Migraine_Me

Em and Kate from Two Being Healthy were also there as patients/caregiver and added great input. Lyfebulb ambassadors continue to grow. I hope that someday we can reunite with these amazing ladies and introduce myself to others. Some day we can gather again and make a difference in the world of migraine and beyond.