Expand VCU's multidisciplinary ALS clinic.
Approxiamtely 800 Virginias have ALS, and nearly three-quarters of them are located within a two-hour drive of Richmond. With expanded resources, the clinic could more than triple the number of patients it treats and provide opportunities for enrolling locally in clinical trials. The ALS Clinic has moved to Reynolds Crossing to share space with the Parkinson's and Movement Disorders Center, a significant improvement over its previous clinic location. The fund will enable the clinic to grow into the new space and hire clinical specialists to provide care specific to the needs of ALS patients in Central Virginia and beyond. Harper's Hope also seeks to create an endowed professorship that will sustain the leadership for the program and support the clinical research arm of practice.
Create an assistance program to support patients and their families.
Many patients with ALS struggle with the financial burdens and complex care that come with an ALS diagnosis. To better provide for patients facing these issues, Harper's Hope aims to provide funds for a patient advocate who will help patients and their care givers access essential resources like loaner equipment programs and navigate government agencies' process for getting disability assistance. In addition, a fund will be available as a safety net resource to help patients with limited financial means afford treatment, equipment and home-care assistance.
Establish a translational research program targeting ALS.
The cure for ALS is not going to be a single drug or a simple pill - no one solution will aid all patients. Instead, VCU researchers believe the cure will be found in therapies that target specific molecular abnormalities in patients. That means defining the molecular subtypes of ALS and then, through clinical trials and research, developing specific therapies to target that subtype based on its molecular signature. The research team is optimistic about the ALS therapies currently under development. Gifts to Harper's Hope will support translational research for ALS and other neurodegenerative diseases by investing in needed facilities, staff, equipment and lab materials.
Create and education and outreach program.
Communication and outreach are criticial to the success of the ALS program and its patients. Education activities supported by Harper's Hope will provide informational materials for patients, caregivers and family members who are eager to seek better treatment for ALS. Outreach includes work with neurologists, patients, caregivers and family members in Central Virginia and beyond.