Marfan Foundation's Global Virtual Conference
- Mark your calendars for Marfan's Yearly Conference which will be held virtually this year. They will explore the power of connection, mental health challenges, the latest research, and much more through a series of engaging webinars and meetings. There's no cost for attendees, but you must register! Click the link below to register.
2024 NYC Walk for Victory
Saturday, June 1, 2024 11 am-2 p.m.
Hudson River Park- Clinton Cove
(Hudson River Greenway, New York, NY 10019
west side highway btwn 55th and 56th Streets)
Hosted by The Marfan Foundation, the Walk for Victory is a global walk program that brings the Marfan, Loeys-Dietz (LDS), Vascular Ehlers Danlos Syndrome (VEDS), and related conditions communities together. .
REDS4VEDS Day
Friday, May 17, 2024
REDS4VEDS Day is a global campaign that takes place on the third Friday of May each year to help raise awareness of vascular Ehlers-Danlos Syndrome (vascular EDS).
3rd Annual vEDS Comedy Fundraiser in Memory of Angelo Nania Jr.
Please Note: as of April 8th 2024, Our event is officially sold out!!! Incredible!!! We have the best supporters! While we cannot accommodate more seats, we would love for you to be able to still support our event or our scholarship fund. Please consider making a donation in lieu of missing our event this year. As always, Thank you!
Date: April 27, 2024
Time: 7 to 11 pm
Location: Archbishop John Hughes Council 481
1305 86th Street
Brooklyn, NY 11228
Downstairs room
Comedy Fundraiser Sponsorship Opportunity Available
Rare Disease Day
Thursday, February 29, 2024
Rare Disease Day is a day to raise awareness of the over 7,000 rare diseases that impact over 300 million people globally! vEDS is a rare disease!
October 14, 2023
First Annual vEDS Scholarship Fundraiser
All proceeds from this event will go toward a Scholarship Fund for young adults whose parents or legal guardian have a confirmed diagnosis of vascular Elhers-Danlos Syndrome (vEDS)
(See our vEDS Scholarship Page for more information)
Aortic Dissection Awareness Day--September 19, 2023
- Aortic Dissection Awareness Day is observed annually on September 19. It was created to raise awareness of a relatively rare condition that is difficult to diagnose and can be fatal when diagnosed too late in an emergency situation.
- Aortic dissection is a condition where the innermost layer of the aorta (the main and largest artery in the body) gets injured, which results in blood flowing between the layers of the aortic wall, forcing them apart. If not treated immediately, aortic dissection can quickly lead to death from aortic rupture or myocardial ischemia (insufficient blood flow to the heart muscle).
REDS4VEDS Day
Friday, May 19, 2023
REDS4VEDS Day is a global campaign that takes place on the third Friday of May each year to help raise awareness of vascular Ehlers-Danlos Syndrome (vascular EDS).
2nd Annual Night of Comedy in Memory of Angelo Nania Jr.
- Date: Saturday, April 29, 2023
- Time: 7 pm to 11 pm
- Where: St. Mary's/Maris Stella Knights of Columbus Council
- 75 Hempstead Avenue, Lynbrook NY 11563
- Cost: $75/person includes Hot Food Buffet, Premium Open Bar and A Comedy Show.
***(𝗟ᴀ𝘀ᴛ ᴅᴀʏ ᴛᴏ 𝘀ᴇᴄᴜʀᴇ ᴀ 𝘀ᴇᴀᴛ ɪ𝘀 𝗪ᴇᴅɴᴇ𝘀ᴅᴀʏ, 𝗔ᴘʀɪʟ 𝟭𝟵ᴛʜ!!)***
𝗡𝗼 𝗪𝗮𝗹𝗸 𝗜𝗻'𝘀 ---𝗮𝘀 𝘄𝗲 𝗻𝗲𝗲𝗱 𝗮 𝗵𝗲𝗮𝗱𝗰𝗼𝘂𝗻𝘁 𝗳𝗼𝗿 𝘁𝗵𝗲 𝘃𝗲𝗻𝘂𝗲
2022 VEDS Movement’s Birthday Bash Celebration
On October 6, 2022 we celebrated the 3rd birthday of The VEDS Movement and the power of our community! Watch the replay here.
Roe Nania served as Chair of the 2022 Event
