What are some current Fundraisers and Awareness campaigns?
For Marfan's, there has been a large amount of work on improving the quality of life of those with the condition. There have been many successful studies resulting in improved treatment and diagnosis for those with the condition. In addition, there have been many more diseases identified that are related to Marfan's resulting in much more precise diognosis.
Recently there have been many types of fundraisers and awareness campaigns such as
- Raising $1.2 Million at Heartworks Gala to Support Life-Saving Programs and Services (April 15, 2016)
- RENT cast members from the past 20 years performed at new York City Heartworks to honor Johnathan Larson (March 29, 2016)
- Congressional Reprisentatives taking steps towads more advanced athletic screenings (March 3, 2016)
Marfan.org's research efforts
On their website, Marfans.org has their current 5 year plan starting in 2016.
- Allows the Foundation to help offset cuts in government research funding by supporting seven new grants for a total of $725,000.
- Allows cultivation of a pipeline of committed Marfan and related disorders researchers, which includes fellows, early investigators and faculty investigators.
- Funds more research that can improve quality of life. In addition to heart-related studies, we are expanding research into quality of life issues, such as pain management, pregnancy, and glaucoma. This year, we are funding a proposal that will identify fibrillin-1 (FBN-1) and fibrillin-2 (FBN-2) rare genetic variants that play an important role in severe isolated scoliosis and whether or not the transforming growth factor-b pathway is involved in scoliosis development.
- Explores the durability of aortic valve-sparing surgery. After providing more than $1.1 million to a critically important study on the short-term durability of aortic valve-sparing surgery, we are now also exploring the long-term durability of this valve-sparing procedure by providing funding for an additional 10-year period.
- Maintains vital support and education efforts. To make sure research advances reach our community as quickly and effectively as possible, we must maintain and strengthen efforts such as our help center, translation services, community events and outreach, and social media efforts.