ex-Of Mice & Men vocalist Austin Carlile readying new music
This year's Marfan Annual Family Conference was a great success! Living with Marfan Syndrome has changed my life more than I ever could have imagined. I love being a part of a community of others than actually understand what it is like living daily with a chronic disease and overcoming constant chronic pain. Such a strong group of teens, young adults, parents, and even staff that all have become family to me over my years of working with the foundation. I found out I had Marfan when my mother suddenly passed from an aortic dissection when I was 17... she was only 38... Marfan Syndrome is a very rare and daunting genetic disorder that medical professionals have yet to find a cure for, but knowing there are others battling the same thing brings so much hope and inspiration. The Marfan community are some of the strongest people I know and with the biggest hearts (some literally.) It was a blessing to spend the weekend with our community and meeting new friends as well. Massive gratitude to @themarfanfoundation for allowing me to speak and participate alongside so many wonderful individuals. With a condition that makes you feel very much alone, it's hard to feel that way after leaving our annual conference and forming life long lasting relationships. Everyone has different struggles and battles in life, but those with Marfan Syndrome or related disorders deal with a different type of chronic pain, being lethargic, and a surplus of hip, rib, lung, heart, feet, spine, eye, head and leg issues day in and day out... Warriors. I'm thankful to be a part of such a caring, strong, and persevering community. Victory together. More info on our condition and how you can help us find a cure in the link in my bio: Marfan.org ???????