Our Story
The Flying Pigs Foundation is a 501(c)3 non-profit, established in August of 2018. We have been raising money to support individuals with muscle diseases since 2009. Our mission is to raise money in support of individuals and families who are diagnosed with muscle diseases in the Greater St. Louis area and promote awareness and education. The Flying Pigs Foundation also awards an annual scholarship and promotes awareness in the local community.
The Board of Directors for The Flying Pigs Foundation is made up of the Hawn and Holler / Bliss families. Our relationship began as neighbors in 2012, in Saint Charles County, Missouri. Shortly after we met, we discovered that our similarities were much different than most families - we both have children who have/had muscle diseases. We have since combined efforts through our Foundation to make a difference in our community.
The Flying Pigs Foundation has a long-standing relationship with the Muscular Dystrophy Association (MDA). The MDA St. Louis Chapter serves children and adults who are diagnosed with a muscle disease.
Hawn Family Story:
The Flying Pigs team was created in 2009, after Jennifer & Chris Hawn experienced the loss of their 6 month old son, Ryan Michael Hawn to Spinal Muscular Atrophy (SMA), Type 1. This debilitating muscle disease causes profound weakness of the core muscles of the body, and for infants like Ryan, primarily the muscles used for breathing. SMA is the number one genetic cause of death for infants, however, new drugs have been approved recently that are helping these infants improve in strength. There are other types of SMA that onset at later stages of life as well. Ryan passed on July 28, 2009, in the arms of his parents. Since Ryan’s death, the Hawn family with their two surviving children, Charlotte and Grant, have been raising money for the MDA St. Louis, and now through the Flying Pigs Foundation.
Holler Family Story:
Four out of the five members of the Holler family are affected by Muscular Dystrophy. Emily (mother), Olivia (daughter), Isabella (daughter), and Bode (son) have all displayed similar muscular weaknesses. Their story began when Olivia was diagnosed with Congenital Myopathy with restrictive lung disease just before her 13th birthday.
From a very young age, Olivia struggled with walking, crawling, and keeping up with her peers during everyday activities. In middle school, she underwent spinal fusion surgery to correct severe scoliosis. As her muscle disease progressed, she began using a wheelchair to help conserve energy and protect my respiratory function, although she is still ambulatory.
On her 13th birthday, she was diagnosed with Congenital Myopathy with restrictive lung disease.
Olivia graduated from the University of Missouri in 2023 with a bachelor's degree in Journalism. Today, she advocates for disability awareness and inclusion while running her own digital marketing business. She lives in Liberty, Missouri, with her fiancé, Jacob. They have been together for eight years, and he has been an incredible source of support and advocacy throughout her journey.
At age 13, Isabella was training 15 to 20 hours each week as a competitive acrobatic gymnast. Over time, she began struggling with skills that had once come naturally to her and was eventually diagnosed with a milder form of Congenital Myopathy with respiratory complications. Isabella graduated from Lindenwood University this past May with a bachelor’s degree in Psychology and will soon begin working at Compass Health while pursuing her master’s degree.
Bode was diagnosed with Congenital Myopathy in 2019 at the age of 9. He continues to participate in athletics, but he faces challenges with endurance and keeping up with his peers. He just finished his sophomore year of high school and celebrated his 16th birthday by getting his license in May.
While the Holler family knows they have a form of Muscular Dystrophy, they still do not know exactly which type.
About a year ago, Olivia was accepted into the Pediatric Undiagnosed Diseases Network, where researchers continue to study the Holler family’s condition in hopes of finding answers. This research may not only help their family, but also other individuals living with rare and undiagnosed neuromuscular diseases.
More recently, researchers with the Undiagnosed Diseases Network discovered that they may have an even rarer form of Muscular Dystrophy that is only beginning to be understood. While they still do not have all the answers, this discovery has given them renewed hope.
The research funded and supported by the Muscular Dystrophy Association is critical for families like the Hollers. It helps move them closer to a diagnosis, better treatments, and one day, a cure.