Скачать или смотреть The Blayke Gloeckner Endowment for Pediatric Epilepsy

Philanthropic Opportunity:
Blayke Gloeckner Fund Supporting Pediatric Epilepsy. To make a gift towards Blayke’s cause click here: bit.ly/donateforblayke

Receiving a Dravet diagnosis for your child can feel like venturing into uncharted territory.

Our beloved daughter, Blayke, is a vibrant and active child who loves swimming and riding her bike. Unfortunately, because of her epilepsy, her favorite activities are often limited. Blayke has Dravet syndrome, a complex form of genetic epilepsy that is difficult to treat and often causes prolonged seizures, impacting the daily lives of those diagnosed.

Blayke’s expert care is managed by the team of epileptologists and specialists at OHSU Doernbecher Children’s Hospital. Despite the robust pediatric epilepsy program, the department does not yet offer the specialized, advanced training only a Pediatric Epilepsy Fellowship can provide. We are on a mission to establish the first Pediatric Epilepsy Fellowship Program in Oregon. Having an established fellowship program at OHSU Doernbecher, means we will no longer have to turn away the brightest minds who seek to further their career with an epilepsy sub-specialty. It means
children like Blayke will have even more access to cutting-edge research, treatments and improved outcomes.

We are thrilled to share that our family has come together with a remarkable investment of $50,000 to launch the Blayke Gloeckner Endowed Fund for Pediatric Epilepsy. This fund represents a heartfelt commitment to transforming care and education within the epilepsy program. But we need your support to build on this inspiring start to bring a fully endowed fellowship program to Doernbecher. Join us by giving generously to help children like Blayke through the training of future epileptologist experts.

Rob & Kirsten Gloeckner

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What Is Dravet Syndrome?

Dravet (pronounced “drah-VAY”) syndrome is a rare, hard-to-treat form of epilepsy. It occurs in 1 in 15,700 births in the United States, and symptoms usually occur in the first year of a child’s life. Dravet syndrome is named after Dr. Charlotte Dravet, who in 1978 first described the condition as a syndrome. It was previously known as severe myoclonic epilepsy in infancy (SMEI).

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Pediatric Epilepsy Program At-A-Glance

OHSU Doernbecher Children’s Hospital includes a comprehensive pediatric epilepsy clinic and program, thanks in large part to its director, Colin Roberts, M.D., FAES, as well as the efforts of an entire team of specialists. Doernbecher’s program is the only pediatric epilepsy sub-specialty clinic in Oregon where children like Blayke, who have complex epilepsy cases, can get comprehensive, cutting-edge care that includes:

Outpatient electroencephalography
Dedicated clinics for diet therapies
Vagus nerve stimulation (VNS) therapy
Responsive neurostimulation (RNS) implants
Genetic testing for more refined treatment and diagnosis

Since 2015, our team has been engaged in several groundbreaking clinical trials, focusing on advancing treatments for pediatric epilepsy. Our research efforts have contributed significantly to the development of new innovative therapies. In August 2020, a patient at Doernbecher received the first dose of gene therapy ever given to a human with epilepsy
under a research protocol. We are closer than ever to finding therapies for those affected by genetic epileptic disorders like Dravet syndrome.

What does it mean to be Level 4?
Doernbecher is home to the only Level 4 center for pediatric epilepsy in the state of Oregon. Level 4 centers offer unique and specialized care for complex cases of pediatric epilepsy like Dravet. This includes intervention and evaluation options that are challenging and proven successful yet require certain levels of expertise and equipment.

Pediatric Epilepsy Fellowship

Losing some of our brightest minds to other facilities and programs specializing in pediatric epilepsy remains a looming risk. This past year, the Doernbecher team sent a resident interested in a sub-specialty in epilepsy to another academic medical hospital, knowing they may not be able to recruit them again in the future. Blayke’s specialist, Dr. Ittai Bushlin, left Doernbecher for a fellowship in epilepsy at another institution, but fortunately, he was successfully recruited back to OHSU.

However, to bring the first Pediatric Epilepsy Fellowship to Oregon and give hope to children like Blayke, we need the additional support of compassionate individuals like you. Establishing a pediatric epilepsy fellowship involves building critical infrastructure, including establishing the fellow’s salary and support systems to develop the program.

Contributions of all sizes ranging from $250 to $250,000 or more make an impact and brings us one step closer to transforming the future for children with epilepsy.

To make a gift towards Blayke’s cause click here: bit.ly/donateforblayke