what is acta2 alliance?
What is ACTA2 Alliance?
ACTA2 Alliance is a foundation for Aortic and Multi-systemic Health.
Our mission is to advocate for patients and families living with ACTA2 and MSMDS uniting physicians, researcher, and families by furthering the knowledge and strengthening the pathway toward living a better life.
Do you remember when you first received the diagnosis? Whether this be for yourself or for your child? At first, you may have been relieved to finally have an answer, but then you realized the rarity and gravity of the syndrome. Perhaps you scoured the internet, as many others have, looking for a resource or website, only to find research articles that were difficult to understand with your notepad in hand, writing down all the medical jargon and performing countless hours of research...going to a physician in hopes of answers, only to be told that we need to be working together as a team because the syndrome is new and not well understood.
For those reasons and many more, was formed: to have the latest information in one place that is easy to understand, along with the latest recommendations for monitoring and follow-up care. As the foundation grows, we will be listing physicians that are currently working with and accepting new patients, as well as researchers interested in finding a cure. We will be a resource for those newly diagnosed and those who already have a diagnosis.
As parents of those affected, we have the most to lose. We are the STAKEHOLDERS! We have a vested interest in a cure. Not by the timeline of scientists, but NOW. This is a call to action. This is a progressive condition, with very scary terms such as stroke, heart failure and respiratory failure. If we work together as a community, we can defy the odds and bring change now. We are not going to wait 15 to 20 years for a cure. We are the STAKEHOLDERS and are one with the COMMUNITY!
The blog is for special interests, such as fundraisers and events, but more specifically it is for your stories. You are the community.
If you have a blog piece you would like to share or if you would like to help in any way, please reach out to us at .
We would love to hear from you.
Foundation for Multisystemic Smooth Muscle Disease
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