The Marfan Foundation

Have you gotten the perfect tee to celebrate Marfan Awareness Month?

Maya's love story has inspired all of us. Find out how it started... but most importantly, how it's going: https://blog.marfan.org/how-its-going

Want to help generate awareness about Marfan syndrome? Our new project is called the Proclamation Project. Our goal is to get every state to declare February as Marfan Awareness Month. It’s a big task but will be well worth it. Amy Kipnis, the volunteer leader of our Legislative Ambassadors Team, created this project and did all the background work to bring it to fruition. We are currently seeking more volunteers to get every state covered. Are you in? We are looking for one... person in each of the states listed below to submit the requested information to their governor’s office. If you would like to be one of them, please email Dominga Noe ([email protected]). Then we will provide you with the details for your state. We would like to get our state volunteers confirmed by December 16. Alaska Delaware DC Hawaii Idaho Iowa Louisiana Minnesota Montana Nebraska New Hampshire New Mexico Oklahoma Rhode Island South Dakota Tennessee Texas Washington Wisconsin Wyoming

Give your kid the gift of connection this holiday season with our virtual party for children with Marfan, Loeys-Dietz, VEDS and related conditions. Your kids will have a blast watching Mario the Maker Magician while they connect with other kids with a rare connective tissue condition. RSVP now:

Happy Hanukkah to all those celebrating!

We are thrilled to congratulate Dr. Marcella Nunez-Smith of Yale Medicine, one of our Marfan Moms, on being named COVID-19 Equity Task Force chair for the upcoming Biden administration. Dr. Nunez-Smith has a young daughter with Marfan; you may have heard her personal perspective during our International E3 Summit this summer. Dr. Nunez-Smith, an associate professor of internal medicine, public health, and management at Yale, is one of the nation’s foremost experts on disparities in healthcare access. She is also associate dean for health equity research, director of the Center for Community Engagement and Health Equity, and the founding director of the Equity Research and Innovation Center at the Yale School of Medicine. We are wishing Dr. Nunez-Smith well as she helps to lead our country through this pandemic.

Will you be at tonight's webinar? Get real life advice about what life is like after aortic surgery by registering now: https://www.tfaforms.com/4864038

Looking for a unique holiday gift? Surprise that special someone with a virtual wine tasting experience! The Wine Aficionado package includes two bottles of wine and an invitation to (Un)Corked, The Marfan Foundation’s virtual wine tasting event. Participants will enjoy a live event from the beautiful Chateau Montelena vineyard in the Napa Valley from the comfort and safety of their home on Thursday, January 21, 2021, 8 pm ET. A bottle of Chardonnay and a bottle of Cabernet i...s included, and shipped to the address you provide. And, best of all, proceeds from the event benefit The Marfan Foundation and its divisions. You can purchase your tickets here: www.marfan.org/uncorked