As we welcome the New Year, we are very excited to share that DEFY will be beginning a new chapter in 2024 as:
DEFY Foundation, Powered by The Marfan Foundation!
We’re excited to continue our DEFY mission with added support through partnership with the Foundation, a leading international organization focused on improving the lives of patients and families impacted by VEDS, as well as other connective tissue conditions.
When we started DEFY back in 2014, it was a simple GoFundMe page with a $5,000 fundraising goal. Very quickly, you blew us away with your support and gave us the courage to set a much larger goal in helping to address the gaps and limitations that we saw in research and awareness focused on Vascular Ehlers Danlos Syndrome. Fast forward almost a decade, and after 5K walks, golf outings, Red Pants Days, four international scientific meetings, and countless reminders of your generosity and support, we are in awe of just how far the VEDS community has come. We have had the opportunity to meet so many incredible researchers, clinicians, leaders, nonprofit groups, and VEDS families along the way, and with our united goal and support from The Marfan Foundation and its division – The VEDS Movement – we firmly believe we are closer than ever to a treatment and a cure.
With this in mind, we look forward to taking this next step as an organization to formally join The Marfan Foundation. While this will mean that DEFY will no longer operate as a standalone 501(c)(3) organization, our vision of finding a cure and defying VEDS remains unchanged, and we are confident that this is the right time and the right partner to continue this fight. We are wholeheartedly committed to championing medical research, facilitating connections with community and business leaders, and living fearlessly, and believe we will be able to do so more impactfully as part of the fabric of a larger organization.
"As the Director of The VEDS Movement and a longtime friend of the Yasick family, I'm thrilled about our collaboration with DEFY. This partnership unites our commitment, passion, and resources towards a pivotal goal: creating a better future for those living with VEDS."
Ryan Rodarmer, MS
Director, The VEDS Movement
As part of this transition, we are introducing a new donation website, which can be found here, as well as on the Donate page. All funds raised through DEFY will continue to be designated specifically for VEDS initiatives, including the scientific meetings that we have supported over the last several years.
From all of us here at DEFY, please know how grateful we are to you for helping us get to where we are today – a place where this type of partnership is possible! We look forward to staying in touch from our new home at The Marfan Foundation throughout 2024!
DEFY Foundation, Powered by The Marfan Foundation!
We’re excited to continue our DEFY mission with added support through partnership with the Foundation, a leading international organization focused on improving the lives of patients and families impacted by VEDS, as well as other connective tissue conditions.
When we started DEFY back in 2014, it was a simple GoFundMe page with a $5,000 fundraising goal. Very quickly, you blew us away with your support and gave us the courage to set a much larger goal in helping to address the gaps and limitations that we saw in research and awareness focused on Vascular Ehlers Danlos Syndrome. Fast forward almost a decade, and after 5K walks, golf outings, Red Pants Days, four international scientific meetings, and countless reminders of your generosity and support, we are in awe of just how far the VEDS community has come. We have had the opportunity to meet so many incredible researchers, clinicians, leaders, nonprofit groups, and VEDS families along the way, and with our united goal and support from The Marfan Foundation and its division – The VEDS Movement – we firmly believe we are closer than ever to a treatment and a cure.
With this in mind, we look forward to taking this next step as an organization to formally join The Marfan Foundation. While this will mean that DEFY will no longer operate as a standalone 501(c)(3) organization, our vision of finding a cure and defying VEDS remains unchanged, and we are confident that this is the right time and the right partner to continue this fight. We are wholeheartedly committed to championing medical research, facilitating connections with community and business leaders, and living fearlessly, and believe we will be able to do so more impactfully as part of the fabric of a larger organization.
"As the Director of The VEDS Movement and a longtime friend of the Yasick family, I'm thrilled about our collaboration with DEFY. This partnership unites our commitment, passion, and resources towards a pivotal goal: creating a better future for those living with VEDS."
Ryan Rodarmer, MS
Director, The VEDS Movement
As part of this transition, we are introducing a new donation website, which can be found here, as well as on the Donate page. All funds raised through DEFY will continue to be designated specifically for VEDS initiatives, including the scientific meetings that we have supported over the last several years.
From all of us here at DEFY, please know how grateful we are to you for helping us get to where we are today – a place where this type of partnership is possible! We look forward to staying in touch from our new home at The Marfan Foundation throughout 2024!