Today we’d like to introduce you to Necia Sabin.
Hi Necia, so excited to have you on the platform. So before we get into questions about your work-life, maybe you can bring our readers up to speed on your story and how you got to where you are today?
20 years ago my daughter was born with a rare condition called Heterotaxy. She was immediately transferred to Primary Children’s where she underwent her first major surgery. None of her organs formed correctly or in the right location except for her gallbladder. That one is lovely. She has had a very long difficult journey involving 4 bowel resections, a bowel lengthening, 5 abdominal surgeries, 4 spinal surgeries, 4 bouts of sepsis, and more minor procedures and hospitalizations than I care to count.
Along the way, I realized that there was very little support for families facing the same diagnosis. In 2014, I founded Heterotaxy Connection with another Heterotaxy mom. We started very small with less 100 families and have grown to over 3,000 from 25 countries. We work with clinicians to advance Heterotaxy care and research. We hosted our first in person scientific and family conference in October.
Alright, so let’s dig a little deeper into the story – has it been an easy path overall and if not, what were the challenges you’ve had to overcome?
My road has definitely not been smooth. I started Heterotaxy Connection 12 years ago because I have a daughter with Heterotaxy. She has problems with almost all of her major organs. She’s undergone 4 bowel resections, a bowel lengthening, 4 stomach surgeries, 4 spinal surgeries, 6 bouts of sepsis, countless hospitalizations, and more minor procedures.
I had no idea how to run a non-profit or really much about Heterotaxy. There were many times I was sitting in my daughter’s hospital room, on my phone, trying to figure things out. As we’ve grown, there hasn’t been a lot of help in teaching me what I’m supposed to do, until 1.5 years ago when we received our first major grant from the Chan Zuckerberg Initiative Rare As One.
Alright, so let’s switch gears a bit and talk business. What should we know?
I started HC in 2014. Up to that point, our journey with my daughter was a very dark, lonely, rough road. The people we connected with best were cancer families. They were the only ones who understood the intensity of what we were dealing with. We started small, as a family support group, and have grown into a worldwide network of families, clinicians, and researchers. We currently have around 2,500 families from 20 countries. I started the Heterotaxy Research and Clinical Care Collaborative to bring clinicians and researchers together to advance understanding and care for Heterotaxy. HC is the only patient advocacy group dedicated to Heterotaxy worldwide. We hosted our first in-person combined family and scientific conference in October. It was so humbling to see doctors approach families to better understand their perspectives, and parents talk to researchers, pointing out gaps we see. At the end, I had a room full of people thanking me for not giving up, for pushing forward despite the many challenges.
If you had to, what characteristic of yours would you give the most credit to?
Determination and a willingness to keep pushing, regardless of what obstacle arises. I once had a mom tell me she had been listening to a podcast about getting stuck in a foreign country. The host said that everyone needed a friend they could call on if they were in that situation. This mom told me she didn’t have to think twice- it would be me. She posted on her social media about it and said it was because it didn’t matter if I was sitting in a hospital, watching my daughter suffer- I just knew how to get things done.
Contact Info:
- Website: www.heterotaxy.org and www.hrc3.org
- Instagram: https://www.instagram.com/heterotaxyconnection/
- Facebook: https://www.facebook.com/heterotaxyconnection/
- LinkedIn: https://www.linkedin.com/company/heterotaxy-connection/
- Twitter: https://x.com/HeterotaxyOrg/
- Youtube: https://www.youtube.com/@HeterotaxyInfo
