What is the Addy Grace Foundation?
We are here to help until THE cure is found!
The Addy Grace Foundation (AGF) is a 501c3 nonprofit organization focused on raising awareness of Spinal Muscular Atrophy (SMA). Our mission is to help build relationships and be a source of encouragement to families affected by SMA.
The AGF grew out of our struggle to come to grips dealing with a child diagnosed with SMA. Early in her life Addy Grace did not meet the milestones that mark normal child development. Several doctors and tests later we had a diagnosis. SMA type 1, also called Werdnig-Hoffmann Disease. The diagnosis of this disease is almost always made before 6 months of age.
Addy exhibited all of the textbook characteristics of SMA. Children with type are never able to lift their head or accomplish the normal motor skills expected early on in infancy. They generally have poor head control, and may not kick their legs as vigorously as they should, or bear weight on their legs. They do not achieve the ability to sit up unsupported. Swallowing and feeding may be difficult and are usually affected at some point, and the child may show some difficulties managing their own secretions.
Nothing can ever prepare you for receiving a SMA diagnosis. It was the the darkest, scariest time in our lives and each day continues to be a struggle, but we have come to cherish the special blessing of each new day with our daughter.
We began the Addy Grace Foundation to give support to families receiving this diagnosis in their children and living life one day at a time.
The AGF provides knowledge and emotional support in learning to care for a child with SMA.
The AGF provides funds directly to families struggling with the disease. We have provided for the purchase of breathing machines, specialized strollers, therapy equipment, hospital bills, etc.
The Garner Family
The Garner family was shocked at the news after the diagnosis of SMA in their first child, Addy Grace. Suddenly their world was forever changed as they came to grips with this all to common rare disease. They started the Addy Grace Foundation to offer help emotional and financial help to other families after receiving a SMA diagnosis in their child.
The Addy Grade Foundation Board
President: James Garner
Vice President: Josh Harvey
Co Vice President: Brad Farrar
Treasurer: Todd Creasy
Secretary: Krista Peery
Fundraising: Adriane Fritz Terry
Marketing: Celia Jones
Website: Josh Wilson
Engineering: Landscape Structures