Stormy Rogers, our founder and CEO, has always had a heart to give back and help the bleeding disorders community since she got involved many, many years ago. After her son was diagnosed with Hemophilia B when he was just 3 years old, she started to look back on her own life and see the signs that she may also have the same condition.
For years women were told they could only be carriers. That bleeding disorders were just for men and boys. Stormy never believed that logic. Not with the symptoms she had her whole life.
Once Stormy started to see the amazing community and all the support that was offered she started the journey of getting her own diagnosis. Doctor after doctor told her it wasn’t possible. That she was only a carrier and that was that. It wasn’t until 2015 when she finally found a physician who would listen. When she went to a private hematologist who agreed and believed her when she said that she was having bleeds and that all the issues her whole life were because she too, had Hemophilia B.
Fast forward and Stormy is now serving on advisory boards, advocacy groups and even ran a non-profit with another community member who saw the need for women’s health support. Where they did programs and other events to help other women get the diagnosis and care they so desperately needed.
After working in the community for a specialty pharmacy, and helping hundreds of women, Stormy decided to go out on her own and start a non-profit with a good friend of hers. And so, WAVES was born.
Born with the idea of encouraging and teaching Wellness, Advocacy, using Voices, Education, and Support. Our mission here at WAVES is to fill in the gaps in the bleeding disorders community. Our goal is to encompass a variety of rare diseases including Ehlers-Danlos syndrome, and whatever else is thrown our way.
Officially established as a 501(c)(3) non-profit in May of 2025 and in last year alone have held 10 events with a variety of specialty pharmacies and pharmaceutical manufacturers. 2026 is looking to be an even bigger year for us with lots of new and exciting opportunities.