About Us

 

 

The UGDH Foundation was founded in 2022 and is incorporated in West Virginia.
IRS Letter of Determination

Board of Directors

Ardee Coolidge

Ardee Coolidge is Director of Optimization for NextAfter and specializes in managing digital marketing and fundraising campaigns. He lives in West Virginia.

Alyssa Maule

Alyssa Maule is a NICU nurse at Capital Health Medical Center in the greater Philadelphia region. She is also Connor’s mom and champion. Connor was born June 14, 2020, and blessed the world until his flight to heaven on October 14, 2021. Alyssa continues to love him by serving The UGDH Foundation.

Brandon Hackett, treasurer

Brandon Hackett has worked in private, public, and non-profit organizations, amassing expertise in auditing, web design, and communications. Brandon lives in Maryland and is Internal Audit Manager for Edify.org.

Jake Hall, secretary

Jake Hall is Digital Marketing Specialist at Stories Marketing. He has fifteen years of experience in nonprofit and commercial project and marketing management. And, he’s dad to Thad, who is diagnosed with a UGDH-related disorder. 

Rebekah Hall, chair

Rebekah Hall has worked in administrative support for both commercial and nonprofit corporations. She’s also Thad’s mom and currently cares for him and his sister full-time in West Virginia.

Scientific Advisory Board

 

Dr. Saumya Jamuar

Dr. Jamuar is a Clinical Geneticist at KK Women’s and Children’s Hospital in Singapore. He also serves as the Lead PI of the Singapore Childhood Undiagnosed Disease Program and is the Clinical Director of the Institute of Precision Medicine, Singhealth Duke-NUS Medical School. His clinical work played an important role in the development of the groundbreaking study on UGDH-related disorders: “Loss-of-function mutations in UDP-Glucose 6-Dehydrogenase cause recessive developmental epileptic encephalopathy,” Nature Communications (January 2020).

Dr. Kristin Barañano

 

Dr. Kristin Barañano is a pediatric Neurology Specialist at Johns Hopkins Hospital in Baltimore, Maryland.

She graduated with honors from Johns Hopkins University School Of Medicine in 2004.  Her expertise is in the study of ataxia, neurogenetics, and neurology, and she has contributed to many studies on these topics. Dr. Barañano is actively conducting a study involving Jamuar Syndrome.

 

LAINA LUSK, mmsc, cgc

Laina Lusk, MMSc, CGC

Laina is a licensed certified genetic counselor at the Children’s Hospital of Philadelphia. Clinically, she sees patients with epilepsy, autism spectrum disorder, intellectual disability, and a range of other neurodevelopmental disorders in the Epilepsy NeuroGenetics Initiative (ENGIN) program. Her research interests include variant curation, gene curation, deep phenotyping, and using large datasets and bioinformatics to illuminate the genotypes and phenotypes of rare neurodevelopmental genes.

She saw her first patient with a UGDH-related disorder in 2020, and looks forward to seeing this community grow, and along with it, new research and treatment opportunities for those affected by this disorder.

 

The UGDH Foundation

P.O. Box 670
Shepherdstown, WV 25443

The UGDH Foundation is a public charity, exempt from federal income tax as an organization, described in Section 501(c)(3) of the Internal Revenue Code. All contributions to the organization are tax-deductible to the fullest extent of the law.

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