Connective Issues Winter 2024

FOUNDATION IMPACT: A Year in Review THE POWER OF OUR COMMUNITY Research and Education programs fuel connections globally.

Programs & Events

2022-2023

2023 Marfan Foundation 39 th Conference – Chicago, IL

Marfan Awareness Month Loeys-Dietz Awareness Month VEDS Action Month Aortic Disease Awareness Week International Research Symposium International Patient Meeting

Total Attendees

628

WALKFOR VICTORY

Countries Represented

12

61

78

Children

Teens

Educational Webinars Virtual Support Groups Regional Symposiums

Attendee Condition Connections 260 Marfan 96 VEDS 118 LDS 27 Other

22 Walks for Victory including 1 Global Walk

Walk for Victory in 22 Cities Virtual Global Walk for Victory Evening with Heart in Scottsdale, AZ and Raleigh, NC Heartworks in St. Louis, Houston, NYC, Chicago UnCorked Wine Event Camps in California and Georgia VEDS Community gathering in Houston LDS Community gathering in Chicago

Over 30 medical workshops on Saturday and 30 mental health workshops on Sunday.

98% of participants

Over 5,000 people

Health Fair at Conference

ratedvery positive to extremely positive

Physicians and Healthcare Professionals

55

Health Fair Participants

68

In 2023-2024 we are planning 23 Walk for Victory events around the world reaching over 5,500 people. Last year we had community chairs from the Marfan, VEDS, and LDS communities.

Multidisciplinary Health Fair Appointments

331

Spanish Language Summit New Mental Health Resources

42 YEARS

We reach more than 5,000 people around the world via emails and one on-one phone calls with our nurse or social workers through our dedicated

Help and Resource Center. Our nurse and social workers help connect our community with the necessary resources

5 , 0 0 0

Research& Progress Serving individuals and families as well as doctors, researchers, genetic counselors, nurses, social workers, and many other healthcare professionals from around the world who treat and care for our community.

including our institutional directory, mental health resources, support groups, educational materials, and so much more. l h l h

We connect thousands of individuals and families to the 70 institutions around the country that offer experience and expertise in Marfan, LDS, VEDS, and other genetic aortic and vascular conditions.

7 0

We continue to reach over a million people each year with educational resources.

1 M I

L L I O N

Since 1986

1

1

WHERE DOES THE MONEY GO?

FUNDED GRANTS CURRENTLY FUNDING 22GRANTS IN THE AMOUNT OF $2.3M 170

1

1

35% 28%

18%

81¢ OFEVERY $1RAISED GOES TO OUR MISSION

RESEARCH

PATIENT SERVICES

EDUCATION & PUBLIC INFORMATION

To download our 2023 Infographic, scan the QR code.

6

Marfan.org