In Kern County, we became more aware of CJD in 2018, after Bakersfield's 25th Mayor and EMS pioneer, Harvey L. Hall, was diagnosed with the sporadic form of Creutzfeldt-Jakob Disease. Unimaginably, it was just two weeks and seven hours following diagnosis that Mayor Hall lost his battle with this horrible disease.
Creutzfeldt-Jakob Disease is caused by "prions," proteins that misfold in the brain, with devastating effects, including rapid mental and physical deterioration. Prion diseases are invariably fatal. This rare neurodegenerative disease currently has no treatment or cure.
Left lost and searching for answers to this rare disease, Mrs. Hall vowed to become a strong advocate dedicated to finding a cure and treatment for CJD. She has since established Strides for CJD – Bakersfield (one of 22 events held in cities across the United States), joined the board of the CJD Foundation, and created the Harvey L. Hall Memorial Grant supporting the work of medical researchers.
For the past six years, Team Big H in Memory of Harvey L. Hall has been the Top Strides for CJD Fundraising Team in the United States, with Strides for CJD - Bakersfield raising over $451,000.00! Please help us keep the momentum going as we raise funds for the CJD Foundation to provide family support, medical education, and funding for research programs related to CJD.
This includes:
Helpline and Support Groups: Helping families navigate their first days or weeks of diagnosis and caregiving.
Medical Education: Connecting with medical education departments of hospitals around the US to offer medical lectures from CJD experts about diagnosis, caregiving, and other vital information.
Advocacy: One of the best ways to help advance prion disease research is to ensure that legislators are educated about prion disease/CJD, its impact on patient families, and what's needed to study the disease and move towards a cure. The CJD Foundation has been working harder than ever to amplify the voices of patients and caregivers in Washington, DC, and to advocate for increased funding for CJD surveillance and research.
Research Grants: To date, the CJD Foundation has awarded 85 grants, totaling nearly $5 million, to help support scientists who study prion disease. The CJD Foundation has also awarded one-year fellowships to 3 early-career scientists. This is an important way to attract younger scientists to the prion disease field under the direction of CJD experts.
Scientific Conference: For the first time this year, the CJD Foundation will be hosting a conference for scientists focused on the synergies between Prion Diseases and Alzheimer’s/Alzheimer’s Related Dementias. Leading scientists in both fields and representatives from the NIH will speak about how to collaborate and move forward together, better-utilizing prion disease as a model for the broader field.
Amy Hall
