“About Us” page copy for the Love of Breanna website:
The mission of The Breanna Foundation is to bring awareness to Rett Syndrome, a rare neurological developmental disorder, by increasing public awareness and understanding of Rett Syndrome and its devastating effects on the child and their family. The annual run is held in memory of Breanna Leatherwood and to raise funds to support The Breanna Foundation, provide support to families caring for those living with Rett Syndrome.
Breanna Leatherwood earned her heavenly angel wings on January 10, 2013, at the age of sixteen.
Rett Syndrome primarily affects girls. Rett Syndrome is a rare non-inherited genetic neurological disorder that affects 1 in 10,000 females (and even more rarely in males) and begins to display itself in missed milestones or regression at 6-18 months. Rett syndrome leads to severe impairments, affecting nearly every aspect of life: ability to speak, walk, eat and breathe easily. The hallmark of Rett syndrome is near constant repetitive hand movements while awake. Cognitive assessment in children with Rett syndrome is complicated, but we know that they understand far more than they can communicate to us, evidenced by their bright and attentive eyes, and their ability to express a wide spectrum of moods and emotions.
This is a rare disease. Currently there is ongoing research to cure Rett syndrome. Presently, there is no cure.
Breanna’s Legacy with Rett Syndrome
“She was such a wonderful girl, and she always had a smile on her face even though she was constantly going in and out of many hospitals,” said Georgia Leatherwood, Breanna’s grandmother and guardian.
After Breanna’s diagnosis, her mother Georgia Leatherwood reached out to the International Rett Syndrome Foundation, the primary organization that provided information, support and annual conferences for families to learn more about the syndrome. However, Georgia Leatherwood said she couldn’t afford the cost of the conferences, the travel and the lodging expenses.
The mother of one of Breanna’s nurses, Marilyn Archibald,saw the difficulty and challenges of caring for a child with severe developmental disabilities. Recognizing the need to connect and unite with other families caring for loved ones with Rett syndrome, Georgia and Marilyn sought to find a way to meet other Rett syndrome families within our area.
Georgia and Marilyn formed Southeastern Rett Syndrome Alliance,a community based organization providing educational opportunities, support and annual conferences for families caring for loved ones with Rett syndrome living within the southeastern region of the United States.
The creation of the Southeastern Rett Syndrome Alliance, which was formed in 2006, was
“the best thing in my life,” Georgia Leatherwood said. “The support and being able to connect with other families,… it was just a relief that you could meet other Rett ladies and girls across the Southeast who are going through what you are going through.”
The annual run is a way to give support to a cause that truly many do not even know Rett syndrome exist. Therefore, as a way to raise awareness and honor those living with Rett syndrome, “I would like to challenge all females to participate in this because Rett syndrome affects females … exclusively,” Georgia Leatherwood said. “Breanna was never able to walk or run, and I would like to challenge them to step out for the females.”
Board of Directors
Marilyn Archibald, President [email protected]
Georgia Leatherwood, Vice President [email protected]
Sherry Archibald Fitch, Founding Member [email protected]
Jeneé Schrule, Member [email protected]
Give today to the Love for Breanna effort
Money donated to the Breanna Foundation effort will:
- Bring awareness to this rare neurological development disorder
- Develop public understanding and awareness of Rett Syndrome
- Provide funds to the UAB Rett Syndrome Clinic
- Donate to families experiencing hardship based on availability of funds
Won’t you contribute today? ANY donation is greatly appreciated!!