The Founding of the Loeys-Dietz Syndrome Foundation
As a previous Neonatal Intensive Care Nurse when Mo was born in 1995, I longed for a place to connect with others as well as find the most up-to-date information in the care of my daughter. At the time, nothing existed, including the name “Loeys Dietz Syndrome”. I knew the benefit of connecting with others as I had helped past patient families find support with other families of a shared experience. In 1995 and the years that followed, I found no clear place for support or direction. My abilities as a nurse and as a mother were greatly challenged over the years, but also fueled the Mama Bear Complex. As Dr. Dietz wrote in the forward for my book Mo A Loeys Dietz Syndrome Memoir “…I have come to accept and rejoice with the knowledge that things will be okay for the child whenever I recognize this ‘mama bear with her cub’ ferocity. I can think of no better example than Kate Jurgens and her daughter Mo.”
When my daughter, Mo and I traveled to meet with Dr. Dietz in the summer of 2007 to further investigate a new set of aneurysm growth, Gretchen and I discussed the topic of networking. Loeys Dietz Syndrome had only been named two years earlier. Information and treatment protocols were in their infancy. Gretchen mentioned that there was a small group of women who had gathered on Standford University Campus the previous summer at the National Marfan Foundation Conference. Beth Utz, Raquel Gomes, and Sheila Waid had been brainstorming ways to connect more families impacted by this rare syndrome. They shared the same ferocity of a mother bear that I did. They had a great interest in being a connection point for families as well as health care providers to improve the knowledge base and support for those impacted by Loeys Dietz Syndrome. They wanted to craft a base where health care providers could further their research about Loeys Dietz Syndrome. Gretchen asked if I had an interest in joining their efforts. She didn’t have to ask twice. I had always wanted a go-to source for the most accurate information in care for my daughter, but I also yearned for a place that understood our family’s struggles and our family’s triumphs in a way that only another impacted family by the same rare syndrome would. I was honored that Gretchen asked me to help. By November of 2007, Gretchen and Beth had Co-Founded the Loeys Dietz Syndrome Foundation and we had our first board meeting.
I worked diligently as a founding board member until June of 2014. While I am retired from the Board, I continue to be involved with the mission of the LDSF. I create awareness through my book that is used with graduate nursing students with a focus on health care communication. I fundraise. I volunteer for the conferences by capturing images and documenting conference weekend.
Over the course of those seven years the foundation weathered the ups and downs that come with building something new, something needed, something cherished, something that has become a central point of connection for so many. Early on there was a basic web profile with a chat room connecting families in the United States and a few from other countries. The LDSF sponsored Q&A sessions with medical experts and hosted family gatherings. Now the Loeys Dietz Syndrome families and health care providers are a part of the world community thanks to social media connections. The LDSF sponsors life transforming conferences every other year that bring the best of medical knowledge and family connection and compassion together under one roof. It has helped guide family and health care provider alike. It has given scholarship to those dedicating themselves to medical research of Loeys Dietz Syndrome. It has sparked creativity and industriousness in families and friends to organize fundraising efforts both small and large. It has created THEplace to find the most accurate information about Loeys Dietz Syndrome -an aspiration and inspiration I have held from early on, even before that first conversation in a small examination room with Gretchen in 2007.
The LDSF, however, is more than a Board of Directors charged with fundraising and conference planning. The LDSF is family that cheers one another and consoles one another. The Foundation is key in connecting the moving parts of business, research, awareness and support. It is the larger whole – the families and their care providers who benefit from the LDSF efforts - that play just as important a role in helping to accomplish the LDSF mission. To continue to be a place of connection, it needs a communal effort. It’s welcoming the new and continuing the build connections with the familiar. It truly does take a village to embrace the mission and vision of the LDSF.
An old African Proverb could be the quintessential way of explaining how the LDSF came together, how it has muddled through and how it has begun to prosper in its efforts in educating health care providers and the general public, fostering research about the many implications about Loeys Dietz Syndrome and creating a far reaching network of support for individuals and their families and friends impacted by Loeys Dietz Syndrome.
“If your vision is for a year plant wheat, if you vision is for a decade plant trees, and if your vision is for a lifetime plant people.”
We need to continue to plant people.
Kate currently resides in Shorewood, WI with her husband, Brian. Kate has four children – Charlie, Mo, Tim and Brigid. Kate works as a Nurse Case Manager to high risk OB patients in city of Milwaukee at Ascension Columbia St. Mary’s Hospital and as well as being a photographer.