PROJECT
SITES

There are currently a limited number of clinical sites with expertise in the diagnosis and management of patients with leukodystrophies. The Global Leukodystrophy Initiative (GLIA) works with many of those sites, and we have invited those with the highest density of patient visits matched with excellent clinical research resources to participate in the initial funding period of this program. Our goal is to add additional sites - domestic and international - as funding becomes available by way of future award cycles or through investments by the GLIA Corporate Collaborative.

Stanford Children’s Health

725 Welch Road
Palo Alto, CA 94304
(650) 497-8000

"Opened in 1991, the Lucile Packard Children's Hospital is the heart and soul of Stanford Children’s Health. Nationally ranked and internationally recognized, our 311-bed hospital is devoted entirely to pediatrics and obstetrics. Its ix centers of excellence provide comprehensive services and deep expertise in key obstetric and pediatric areas: brain & behavior, cancer, heart, pregnancy & newborn, pulmonary and transplant. These teams also provide an additional, wide range of services for babies, kids and pregnant moms.

Stanford Children’s Health provides extraordinary care today. Their new hospital expansion adds an additional 521,000 square feet to Lucile Packard Children’s Hospital, allowing their teams to treat even more patients and make advances in preeminent care.

Patients of all ages who receive care at Lucile Packard Children’s Hospital Stanford or Stanford Hospital & Clinics benefit greatly from the close proximity to Stanford University which fosters multidisciplinary research, family-centered-care and groundbreaking innovation."

For more information, click here.

Children's National Health System

111 Michigan Avenue NW
Washington, D.C. 20010
(202) 476-5000

"Children’s National Health System, based in Washington, DC, has been serving the nation’s children since 1870. Children’s National is Magnet® designated, and was ranked among the top 10 pediatric hospitals by U.S. News & World Report 2015-16. Home to the Children’s Research Institute and the Sheikh Zayed Institute for Pediatric Surgical Innovation, Children’s National is one of the nation’s top NIH-funded pediatric institutions. With a community-based pediatric network, seven regional outpatient centers, an ambulatory surgery center, two emergency rooms, an acute care hospital, and collaborations throughout the region, Children’s National is recognized for its expertise and innovation in pediatric care and as an advocate for all children.

As the only health system designed for kids in the Washington, DC, metropolitan area, we believe every child should be cared for by professionals who have devoted their career to children’s medicine. At Children’s National Health System, we are dedicated to providing the best pediatric care for our patients, families, and community. We are the premier provider of pediatric care in the region and the only freestanding children’s hospital between Philadelphia and Atlanta.

Serving the nation’s children for more than 140 years, we are a proven leader in the development and application of innovative new treatments for childhood illness and injury. Our internationally recognized team of pediatric healthcare professionals treats more than 300,000 patients each year who come from throughout the region, nation and world."

For more information, click here.

Emory University & Children's Healthcare of Atlanta

975 Johnson Ferry Road
Atlanta, GA
(404) 785-5437

"Children’s Healthcare of Atlanta has been 100 percent dedicated to kids for more than 100 years. A not-for-profit organization, Children’s is dedicated to making kids better today and healthier tomorrow. Our specialized care helps children get better faster and live healthier lives. Managing more than a million patient visits annually at three hospitals, Marcus Autism Center, and 27 neighborhood locations, Children’s is the largest healthcare provider for children in Georgia and one of the largest pediatric clinical care providers in the country. Children’s offers access to more than 60 pediatric specialties and programs and is ranked among the top children’s hospitals in the country by U.S. News & World Report. With generous philanthropic and volunteer support since 1915, Children’s has impacted the lives of children in Georgia, the United States and throughout the world.

In the Department of Neurology, we treat disorders of the nervous system including conditions of the brain, spinal cord, nerves and muscles. We have more than twenty pediatric neurologists who work alongside other specialists to create treatment plans for your child. We rank among the top pediatric hospitals in the country for neurology.

Neurologists are actively involved in multispecialty programs and clinics at Children’s. This approach enables us to provide a broad continuum of care to our patients. Our multidisciplinary team can treat patients with a variety of congenital and acquired neurological conditions. Our team works with other specialists so that we can provide complete, effective care for your child. Treatment will be tailored for your child’s needs, and we’ll work with you at every stage so you will know what to expect.

We also work closely with private practice neurologists, who are part of our Neurosciences Program and are active members of our medical staff, to deliver care to neurology patients."

For more information, please visit the website here.

Massachusetts General Hospital

55 Fruit Street
Boston, MA 02114
(617) 726-2000

"Since 1811, Massachusetts General Hospital has been committed to delivering standard-setting medical care. Throughout the decades, the hospital has had a consistent commitment to advancing that care through pioneering research and educating future health care professionals.

The third oldest general hospital in the United States and the oldest and largest hospital in New England, Mass General continues its tradition of excellence today. Mass General has consistently placed among the top hospitals on the U.S. News & World Report Best Hospitals Honor Roll since the survey began in 1990. In 2015, Mass General was named #1 in the nation based on our quality of care, patient safety and reputation in 16 clinical specialties.

With more than 300 physicians, 50 medical specialties, 15 surgical services, and compassionate preventive and primary care, we are an invaluable resource for the healthcare needs of infants, children and adolescents. At MassGeneral Hospital for Children (MGHfC) we have the expertise and experience — as well as the state-of-the-art facilities and technologies — to provide exceptional care for our patients.

Our patients have complete access to the resources of the world-renowned Massachusetts General Hospital, including innovative research and treatments. As our patients grow, they also benefit from the smooth transition of care between pediatric and adult services at Mass General."

For more information, click here.

Kennedy Krieger Institute

707 North Broadway
Baltimore, MD 21205
(443) 923-9200

"Kennedy Krieger Institute is an internationally recognized institution dedicated to helping children and young adults with disorders of the brain, spinal cord, and musculoskeletal system to achieve their potential. Caring for more than 20,000 children and young adults annually, we strive to help those with developmental disabilities to thrive at home, in school, and throughout their communities through a wide range of patient care, special education, research, and community programs.

Our scientists dedicate their careers to improving patient care through research, professional training, and education. As leaders in preventing and treating disorders of the brain, spinal cord, and musculoskeletal system, they share their knowledge with the entire community of educators, researchers, therapists, physicians, and other professionals committed to patients with developmental disabilities both at Kennedy Krieger and beyond.

A nationally recognized “Blue Ribbon School of Excellence”, Kennedy Krieger School is a leader in innovative education for children, adolescents and young adults with a wide range of learning, emotional, physical, neurological, and developmental disabilities. We offer a number of school- based, hospital-based, and recreational programs designed to unlock the potential inside each and every student.

The Maryland Center for Developmental Disabilities at Kennedy Krieger Institute is committed to increasing awareness and breaking down barriers in society, allowing all individuals with developmental disabilities to achieve their potential in work, school, and community life. This is accomplished through a wide range of community-oriented programs, projects, and services."

For more information, click here.

Children's Hospital of Philadelphia

3401 Civic Center Boulevard
Philadelphia, PA 19104
(215) 590-1000

"The Children's Hospital of Philadelphia (CHOP) is the nation's first hospital devoted exclusively to the care of children. Since our start in 1855, CHOP has been the birthplace for many dramatic firsts in pediatric medicine. The Hospital has fostered medical discoveries and innovations that have improved pediatric healthcare and saved countless children’s lives. Today, families facing complex conditions come to CHOP from all over the world, and our care and innovation has repeatedly earned us a spot on the U.S. News & World Report's Honor Roll of the nation's best children's hospitals.

As a charitable, nonprofit hospital, CHOP depends on philanthropy to advance its mission. Throughout the Hospital’s history, generous families, individuals, companies and foundations have made significant contributions to The Children's Hospital of Philadelphia Foundation.

In its first year, Children's Hospital collected just over $4,000 in donations. When the Hospital moved to its Bainbridge Street location in Center City Philadelphia in 1916, and funding was urgently needed, the community contributed $500,000 in 10 days! Such vivid illustrations of generosity carry on to this day: Last year, the Hospital raised more than $100 million in gifts and pledges.

This support has helped make Children's Hospital a beacon of hope — where research leads to cures and families find the best care for their children."

For more information, click here.

Baylor College of Medicine & Texas Children’s Hospital

6621 Fannin Street
Houston, TX 77030
(832) 824-1000

"Texas Children's Hospital, located in Houston, Texas, is a not-for-profit organization whose mission is to create a healthier future for children and women throughout the global community by leading in patient care, education and research. It is consistently ranked among the top children’s hospitals in the nation. With more than six decades of experience caring for some of the rarest and most complex cases, their providers offer expertise for families and strive for the best possible outcomes for every child.

Texas Children's Hospital and its integrated teams of specialists extend care to more than 2 million patient visits annually. Last year, over 500 of those visits were for patients with a known leukodystrophy. This number is expected to grow with the addition of X-ALD to the Texa sNewborn Screening Program in 2019/2020. The Texas Children’s Leukodystrophy Clinic incorporates a multidisciplinary team approach for the diagnosis and management of patients with genetically inherited white matter disorders.

Research at Texas Children’s Hospital, spans more than 800 active clinical trials, over 800,000 square feet of laboratory space, and one of the largest and most diverse pediatric patient populations in the country. With funding of more than $115 million annually, over 120 Texas Children's and Baylor College of Medicine principal investigators are conducting over 1,000 clinical, basic science, and translational research projects at any given moment.”

For more information, click here.

University of Utah Health & Primary Children’s Hospital

100 North Mario Capecchi Drive
Salt Lake City, UT 84113
(801) 662-1000

"Primary Children's Hospital is one of the best children's hospital in the western United States. Our 289-bed hospital is equipped and staffed to care for children with complex illness and injury.

Our hospital motto, The Child First and Always® gives us a visible, concise statement of our philosophy. It informs and reassures those who seek our services, and serves as a daily reminder to employees of our commitment to children. This phrase originated from the Hospital for Sick Children in London, England, where it has been used as a motto since the hospital’s beginning in 1852.  

The University of Utah Leukodystrophy Clinic accepts referrals for evaluation, diagnosis, and treatment of inherited leukodystrophies. If families are interested, they can enroll in the Western Leukodystrophy Project, one of the largest longitudinal studies of children with leukodystrophies. Requests for referrals should be initiated by contacting Dr. Bonkowsky directly by email.

Thousands of individual children receive extraordinary care each year at Primary Children’s, provided in an atmosphere of love and concern.

For more information about Primary Children's Hospital, click here."