Every August, Make-A-Will Month serves as an important reminder that creating an estate plan isn’t just about preparing legal documents; it’s about protecting the future for the people and causes that matter most.
For longtime Foundation supporter Chris Ihde, including the Marfan Foundation in his estate plans, was one of the easiest decisions he has ever made.
Chris, a retired Aerospace engineer, was diagnosed with Marfan syndrome at a time when information was difficult to find, and experienced specialists were even harder to locate. Growing up before the internet, he recalls that many healthcare providers knew very little about the condition. Although doctors suspected Marfan syndrome, no one connected him with the specialized care he would eventually need.
Everything changed in 1990.
After reading a magazine article that mentioned the Marfan Foundation, Chris reached out for help. The Foundation quickly connected him with specialists at Johns Hopkins, where he became a patient of renowned ophthalmologist Dr. Irene Maumenee. Later, he saw geneticist Dr. Hal Dietz and ultimately underwent aortic surgery with Dr. Duke Cameron.
Looking back, Chris believes that his single decision to contact the Marfan Foundation changed the trajectory of his life.
“If I had sought medical assistance locally, I likely would not have received care from medical professionals who were experienced in treating Marfan patients.”
For more than 35 years, Chris has remained connected to the Foundation as a donor and conference attendee. He has watched the organization grow from printed newsletters arriving in the mail to today’s education programs and conferences, digital offerings, patient resources, and research initiatives.
When it came time to update his estate plans, giving back simply felt right.
“As a regular donor to the Marfan Foundation, adding them to my estate was an easy choice,” he says. “The Marfan Foundation helped guide me on getting the best information over many years to make decisions for my medical care.”
Chris hopes his legacy gift will help ensure future generations continue to have access to expert education, specialized care, and groundbreaking research.
“My hope is that my legacy gift will help continue patient education and fund Marfan-related research for years to come.”
He also encourages others not to delay creating an estate plan.
“Estate planning is a duty to your family,” Chris says. “Before you pass, you should make the estate transition as easy as possible for those you leave behind. Your legacy intentions are simply one part of that plan.”
Whether a legacy gift is large or small, Chris believes every gift is a meaningful way to express gratitude.
“The size of the gift is a nice thing, but showing appreciation, no matter how big or small, to the organization that helped medically guide you means a lot.”
For Chris, his planned gift is ultimately about saying thank you.
“The people with Marfan syndrome—they are my community. This is how I am able to say, ‘Thank you for everything you have done through the years.'”
Interested in learning more about creating your legacy?
Including the Marfan Foundation in your estate plans is one of the simplest ways to ensure future generations continue to benefit from education, support, advocacy, and research. During Make-A-Will Month, we invite you to explore how a planned gift can help create a healthier future for our community.
Create Your Will for Free
Through our partnership with FreeWill, you can create a legally valid will or trust online at no cost. The process is easy to use, typically takes about 20 minutes, and can be completed on its own or before meeting with an attorney. Get started on your free will here.
Other Ways to Leave Your Legacy
You can also support the Marfan Foundation by:
- Including a gift in your will or living trust
- Naming the Marfan Foundation as a beneficiary of your retirement account (IRA, 401(k), 403(b), pension), life insurance policy, or other eligible assets
- Completing a Gift Intent Form if you’ve already included the Marfan Foundation in your plans, allowing us to thank you and recognize your generosity (if you choose)
Every Legacy Matters
A legacy gift isn’t about the size of the contribution; it’s about ensuring that the resources, expert care, and hope that have changed lives today will continue for generations to come.
Learn more about planned giving or begin your free will today by clicking here.
Susan Benvenuti is the VP, Integrated Marketing & Communications for The Marfan Foundation. She enjoys getting to know community members and sharing their unique stories. If you would like to share yours, we’d love to hear from you - get started by emailing sbenvenuti@marfan.org.