When I started my journey with The Marfan Foundation 19 years ago, we were up against so much. Far too many families were in the dark about Marfan and related disorders. And if they did get properly diagnosed, the frustrating message from doctors was that the tissues are weak and there’s nothing you can do about it.
Back then, my vision of victory was simply strengthening this community and starting the fight for more research.
I never could have imagined that 19 short years later, our new research expansion plan would aim for nothing less than the elimination of life-threatening aspects of Marfan syndrome and related disorders. And more, that we’d be funding new research into quality of life issues like pain management, pregnancy health, and glaucoma treatments.
Because of you, these victories are coming into sharper focus than ever before.
…I see it in the stack of research proposals on my colleague Josephine’s desk—higher than ever this year!
…I see it in a conversation with a mom at our annual conference—her young daughter’s feet are warm for the first time ever after surgery strengthened her heart.
…I see it in the laugh lines on an older supporter’s face—just years ago, too many were not living past forty, and this friend is still going strong at 55.
Research that the Foundation has supported has helped make each of these victories possible. And with record-breaking numbers of research proposals in the pipeline, we’re poised to take our work to a whole new level.
Over the next few weeks, we’ll be launching a very special Research and Progress Appeal in order to seize this moment of opportunity. We’ll be reporting on progress and plans, and asking you to help us make those plans a reality.
Today, though, I want to kick off this campaign by simply saying thank you.
Every day you give me new visions of the victories we can achieve together. Please know how honored I am to be part of this fight with you.
If you can, I hope you’ll share the victories you’re fighting to achieve in the comments below.
Is it a pain-free walk on the beach? A birthday celebration? Seeing a loved one grow up strong? I’d love to hear them, and I know they’ll inspire your fellow supporters as well.
Happy holidays to you and yours. And thank you for being part of this moment with us.
Carolyn Levering, President and Chief Executive Officer, joined The Marfan Foundation in 1994. Under her leadership, the Foundation has transformed from a small grass roots support organization to a sizable nonprofit volunteer health organization.