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.
President
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 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.
Vice President, Treasurer
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 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.
Director of Research
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 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.
Secretary
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 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.
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.
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