At a time when technology infuses our lives in almost every way, it is hard to imagine that the personal computer was invented only 35 years ago. Around that same time, a group of concerned moms and physicians were rallying around a rare condition called Marfan syndrome. Their goal was learning as much as they could to spread awareness. After forming a nonprofit, known today as The Marfan Foundation, they started bringing people together for an annual conference. The first Marfan Annual Conference was held 35 years ago this year.
Dr. Suess said, “Sometimes you will never know the value of a moment until it becomes a memory.” These magical moments help shape us and introduce us to people and things that would have never entered into our lives if it were not for that single moment. Big moments might seem to hold more value, but it is often the small moments that change everything.
I’ve had many magical moments. One of them was after I entered a few keywords into a search engine.
This was before Google. It was after our son and two of our daughters had hernia repair surgery on the same day at Cincinnati Children’s. It was after both daughters had complete recoveries, and our son’s repair failed and was terribly infected.
I typed in “hernia repair failed in children.” The search generated many results, but at the top of the list were three very important words. The top result would lead us to further discovery and into the lives of people we would have never connected with otherwise.
The three words at the top of the search results? Connective. Tissue. Disorders.
Suddenly, all of those single fleeting moments of speech therapy, physical therapy, retrognathia, micrognathia, wide spaced eyes, flat feet…question after question as to why our son was experiencing “this ”…
These three words combusted into over twenty thousand connective tissue disorders that could potentially answer the ‘whys.’ It was during this search that I found The Marfan Foundation.
Moments in Community
My first Marfan Annual Conference was the first time I met other moms who had been on a similar journey. They shared moments reminiscent of my own, of trying to reach a diagnosis for our children.
It was the first time I had not only seen other children and adults with Marfan and related conditions, but physicians that genuinely cared about finding ways to help the patients they treated.
I saw caring board members and session leaders who were focused on patient care throughout the jam-packed weekend. Many individuals were seen for the first time by top professionals in the field, perhaps even getting a new diagnosis they didn’t know they had.
Teens had the opportunity to ask doctors real questions in a setting that was comfortable and relatable.
Programming was designed to allow moms and dads to form a bond with other parents; significant others of those affected found a place; and children finally felt connected to other kids facing the same medical situation.
Isn’t it ironic that connective tissue disorders inherently connect us in unimaginable ways?
I am so very thankful for everything the Foundation does and continues to do to help the Marfan and related conditions community collaborate, connect, and continue to push forward with important patient-centered initiatives.
In every chance to connect, learn, or collaborate, there is opportunity for a moment that may seem insignificant at the time…but could lead to a memory that is everlasting. That’s what has made 35 years of Annual Conferences momentous and invaluable!
The 2019 Marfan Annual Conference will be held in Houston, Texas, July 11-14. Registration and additional information can be found at marfan.org/conference19.
Beth Utz is a member of The Marfan Foundation board of directors and lives in rural Ohio with her husband and six children.