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HOPE for Harvey
Home
Harvey's Story
Leadership
Donate Today!
Treatment
Events/Blog
More
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  • Donate Today!
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Board of Directors

We are a group of like-minded parents, professionals, and advocates focused on furthering research, translational medicine, treatment options, and early detection for DLG4 and all rare genetic disorders.

Jackie Skinner-Foster, SSP

Jackie Skinner-Foster, SSP

Jackie Skinner-Foster, SSP

President

jackie@hopeforharvey.com


Jackie received her Specialist in School Psychologist graduate degree in 2012, and has been working with individuals with disabilities since 2004 through various capacities, including home and community-based settings, residential placements, and in the public school setting. Jackie never knew that her kno

President

jackie@hopeforharvey.com


Jackie received her Specialist in School Psychologist graduate degree in 2012, and has been working with individuals with disabilities since 2004 through various capacities, including home and community-based settings, residential placements, and in the public school setting. Jackie never knew that her knowledge and background in psychological assessment and wide range of experiences with individuals with disabilities would become imperative when she became Harvey's mom.  Harvey was born with an ultra-rare genetic disorder, DLG4-related Synaptopathy. Jackie’s passion for improving the quality of life for individuals with disabilities is paramount in her effectiveness as President of the HOPE for Harvey Foundation. 

Brenda Foster

Jackie Skinner-Foster, SSP

Jackie Skinner-Foster, SSP

Vice President, Treasurer

brenda@hopeforharvey.com


Brenda is the controller and office manager of a commercial floor covering company in Kansas City. Brenda has been personally impacted by genetic mutations in two ways. Not only is she Harvey’s grandmother, her father was diagnosed with familial ALS in 2016; passing in 2018.  Brenda believe

Vice President, Treasurer

brenda@hopeforharvey.com


Brenda is the controller and office manager of a commercial floor covering company in Kansas City. Brenda has been personally impacted by genetic mutations in two ways. Not only is she Harvey’s grandmother, her father was diagnosed with familial ALS in 2016; passing in 2018.  Brenda believes that the science is here to find cures for rare genetic mutations, including DLG4, that will help improve the quality of life for all who are affected. Brenda currently resides in Stilwell, KS. 

Desiree Yang, Ph. D.

Jackie Skinner-Foster, SSP

Desiree Yang, Ph. D.

Director of Research

desiree@hopeforharvey.com


Desiree received her Ph.D. from the Department of Microbiology and Immunology at Harvard Medical School, where she studied the regulation of enzymes critical for the process of cell division in Escherichia coli. Following her Ph.D. work, she conducted post-doctoral research at the Fred Hutchins

Director of Research

desiree@hopeforharvey.com


Desiree received her Ph.D. from the Department of Microbiology and Immunology at Harvard Medical School, where she studied the regulation of enzymes critical for the process of cell division in Escherichia coli. Following her Ph.D. work, she conducted post-doctoral research at the Fred Hutchinson Cancer Research Center looking for genetic determinants of cell shape in the human pathogen Helicobacter pylori. Currently, Desiree resides in Seattle, WA with her family.

Amanda Kelly, SSP

Secretary

amanda@hopeforharvey.com


Amanda received her Bachelor’s degree in Psychology and Specialist degree in School Psychology. She has a background in psychological assessment. Amanda has worked with children in various capacities over the year and is currently a School Psychologist in the public school system. She has dedicated her lif

Secretary

amanda@hopeforharvey.com


Amanda received her Bachelor’s degree in Psychology and Specialist degree in School Psychology. She has a background in psychological assessment. Amanda has worked with children in various capacities over the year and is currently a School Psychologist in the public school system. She has dedicated her life to advocating for children with disabilities and assuring they receive appropriate services within the school setting. Amanda has close ties to Harvey as she went to graduate school with his mom! As Secretary, she hopes to further the understanding of rare genetic disorders like Harvey’s and discover possible treatments to better his life among countless others. 

About the foundation

We received our 501c3 determination letter from the IRS on 5/23/2022 as a non-profit. Our FEIN is 88-2652347, and our DLN is 26053560002992. See below for additional documentation.

Important Documents

501c3 Determination Letter (pdf)Download
DBA Certificate-HOPE for DLG4 (pdf)Download
HOPE for Harvey Foundation Inc. Certificate of Amendment (pdf)Download

Copyright © 2025 HOPE for Harvey Foundation - All Rights Reserved.

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