OUR CAUSES
About Dravet Syndrome
Dravet syndrome, also known as Severe Myoclonic Epilepsy of Infancy (SMEI), is a rare and severe form of epilepsy that begins in infancy. It is characterized by prolonged seizures and a range of other health issues that significantly impact individuals throughout their lifetime. With an estimated incidence rate of 1 in 15,700, Dravet syndrome presents a challenging journey for those affected. The mission of the Dravet Syndrome Foundation (DSF) is dedicated to raising funds for Dravet syndrome and related epilepsies. They focus on supporting and funding crucial research, increasing awareness, and providing comprehensive support to affected individuals and their families. Their goal is to improve the quality of life for those living with Dravet syndrome and ultimately find a cure.
Meet Anna Grace OdLaug
Anna Grace was born in September 2017 and diagnosed with Dravet Syndrome in May 2018 after experiencing prolonged seizures. Despite being only six years old, Anna has faced immense challenges, enduring over 1,200 seizures and numerous hospital visits. Like many children with DS, Anna deals with developmental delays, sleep disturbances, physical limitations, behavioral challenges, sensitivity to illness, and traits associated with autism.
Despite these hardships, Anna's strength and resilience shine through. She recently completed Kindergarten and is excited to start First Grade in the Fall. Known for her affectionate nature and bright smile, Anna continues to inspire those around her.
Unfortunately, Dravet Syndrome is notoriously treatment-resistant. Despite taking multiple medications, Anna still experiences frequent seizures. Her family believes that a disease-modifying treatment, such as gene therapy, is essential for Anna's future independence. With promising treatments in late-stage development, they are hopeful that Anna will soon have access to these life-changing therapies, thanks to the advancements supported by the Dravet Syndrome Foundation.
Support Our Cause
You can make a difference by purchasing a Dravet Foundation Custom Tie Dye creation (the pattern pictured to the left) in any size or style. A portion of the proceeds will benefit the Dravet Syndrome Foundation, aiding in the fight against this challenging condition and supporting families like Anna's. Help the Dravet Foundation improve the lives of those affected by Dravet syndrome. Your support brings hope and a brighter future. ** Please note that this custom apparel is handmade with love and prints may very slightly from order to order.
About Take Part Foundation The Take Part Foundation is a 501(c)(3) that allows anyone to “take part” in fighting for possible. They identify existing medical research for rare pediatric conditions that likely will not be able to find funding elsewhere, and fund it until it reaches the point where the research team can apply for funding from larger organizations and foundations. Take Part also provides funding for families who get denied access to genetic testing by their insurance but need the test to help diagnose their child in order to get coverage for their needs. They help rare disease kids thrive through research and resources.
Meet the Founders
Matt and Maria Granados are the parents of 6-year-old Natalie, who suffers from a genetic disorder called PYROXD-1. They are a family of faith—and a family of action. They’re tired of waiting for answers that likely will not come in time to save their daughter. They’ve been called to create the Take Part Foundation to fund research that can help find answers for Natalie and others like her.
Support Our Cause
You can make a difference by purchasing a Take Part Foundation Custom Tie Dye creation (the pattern pictured to the right) in any size or style. A portion of the proceeds will benefit the Take Part Foundation. ** Please note that this custom apparel is handmade with love and prints may very slightly from order to order.
