EDITOR’S NOTE: Shortly after publication of the spring issue of the Chronicle of Giving, the foundation was deeply saddened to hear that Jerry Creehan lost his battle with ALS on May 3. A VCU Health patient, Jerry was an extraordinary advocate for families and patients living with ALS and helped make the Sedona Taphouse fundraiser possible. We share sincerest condolences to the Creehan family.
Amyotrophic lateral sclerosis is one of health care’s most heartbreaking challenges for the patients and families affected. The progressive neurodegenerative disease, commonly known as ALS or Lou Gehrig’s disease, is unsparing as it affects motor nerve cells in the brain and spinal cord, ultimately leading to death. The average life expectancy for ALS patients is only two to five years.
While there is no cure for the disease, one Central Virginia effort continues to bring hope to patients with ALS and their loved ones and has inspired several community organizations. Harper’s Hope Fund for ALS was founded in 2014 by Vic Harper and his family to raise support for ALS research and patient care programs at VCU Health. The fund enhances ALS clinical programs, helps educate the public about the disease and supports innovative research.
The impact of ALS has resonated with several Richmond-area organizations and businesses, including Main Street Homes, Meadowbrook Country Club, the Quinn Group and Sedona Taphouse, all of which have organized fundraising events to support the Harper’s Hope Fund in recent years. Overall, these community-led efforts raised over $50,000 for Harper’s Hope in 2021. These efforts helped honor the legacies of beloved colleagues and friends and increased the total raised since 2014 for the Harper's Hope Fund to nearly $900,000.
“This support has allowed us to expand our offerings to patients,” said Kelly Gwathmey, M.D., who began leading the VCU Health ALS clinic in 2019. “The clinic initiated three large-scale drug studies, including one that was activated in August, and has seen one of the highest enrollment numbers in the country.”
Another project that benefited from the fund’s support involves a clinical assessment of the geographic distribution of ALS in Virginia, which improved community outreach and education about the disease.
A second dedicated ALS research coordinator was hired from proceeds of the fund, positively impacting patient access to research opportunities like clinical trials.
"My entire team and our patients have benefited greatly, thanks to the all the good work Harper's Hope has done to raise funds and increase overall awareness for ALS in the community,” Dr. Gwathmey said. "We remain grateful to Anne Harper and her family for their continued passion and commitment to improving the lives of ALS patients at VCU Health."
If you would like to support Harper’s Hope Fund for ALS, please contact Bernadette O’Shea, senior director of development for neurosciences at VCU Health, at email@example.com or 773-718-5668.