A Gift of Gratitude
“I learned so much from the Marfan Foundation. What if it never existed?”
By the time Chris Ihde first contacted the Marfan Foundation by sending a letter in 1990, he had spent years searching for answers.
Today, writing that single letter remains one of the most important decisions of his life.
“When I was young there was no internet, no email,” Chris said. “Many local medical professionals hardly knew what was needed to diagnose and treat a Marfan patient.”
An aerospace engineer who spent his career working on Space Shuttle missions and military satellites, Chris approached challenges with careful analysis. But navigating a rare genetic condition without reliable information proved challenging.
Although some doctors suspected he had Marfan syndrome, finding specialists with real expertise was difficult. When Chris was 26, an internal medicine physician confirmed the diagnosis, but there was still little guidance about where to turn for specialized care.
A Connection That Changed Everything
Everything changed in 1990 after Chris read a magazine article that mentioned lens dislocation as a sign of Marfan syndrome. In a follow-up issue, a reader wrote in with a simple question: Why hadn’t the article mentioned the Marfan Foundation?
That brief response included the Foundation’s mailing address.
Chris wrote immediately.
Within a short time, the Foundation connected him with a list of ophthalmology specialists, and he became a regular patient of Dr. Irene Maumenee at Johns Hopkins. Eventually, he saw Dr. Hal Dietz for genetics care and later underwent aortic root replacement surgery performed by Dr. Duke Cameron.
Looking back, Chris believes those connections may have changed, and even saved, his life.
“All of this started by writing to the Marfan Foundation,” Chris recalled. “If I had sought out medical assistance locally, I likely would not have received care from medical professionals who were experienced in treating Marfan patients.”
Growing Alongside the Foundation
Over the next three decades, Chris remained an active supporter of the Foundation. He attended conferences, relied on educational resources, and watched the organization evolve.
“When I recall the early days of the Marfan Foundation and look now at the virtual and in-person conferences and educational and support resources, I am in awe of the progress I have seen in the last 35 years,” said Chris.
Giving Back to the Community
That growth and gratitude also shaped how Chris began thinking about his own legacy. He made the decision to add the Marfan Foundation as part of his estate planning. As Chris puts it, he became “compelled to ensure funding for patient education and scientific research continues to benefit future affected individuals.”
He also wants to help ensure everyone keeps receiving the same type of guidance that helped him.
“Some people donate to schools of higher education. For me, the Foundation helped guide me on getting the best information over many years, to make decisions for my medical care. The Marfan Foundation was an easy choice.”
“My hope is that my legacy gift will help continue patient education and fund Marfan related research for years to come.”
For Chris, planned giving is about far more than finances.
He hopes others view estate planning first as an act of responsibility to their loved ones, and then as an opportunity to support causes that have shaped their lives.
As he reflects on more than three decades with the Foundation, one thought continues to stay with him.
“I learned so much from the Marfan Foundation,” he said. “What if it never existed?”
It’s a question that reminds him how different his own story might have been. Instead, because someone was there to answer a letter in 1990, Chris found the experts, the care, and the community he needed.
Today, through his planned gift, he hopes someone else will have that same opportunity decades from now.
Learn about ways to leave a lasting legacy at Marfan.org/give. You can also use our trusted online tool to create a create a will online for free in about 20 minutes. Get started here.
This article appeared in the fall edition of the Marfan Foundation’s publication, Connective Issues. Click here to read the fall issue.
The Marfan Foundation drives research, education and support – and builds community – to improve outcomes, save lives and empower all people to thrive who are living with Marfan, Loeys-Dietz, Vascular Ehlers-Danlos syndromes, and related genetic aortic and vascular conditions.