The Children's Fund for Glycogen Storage Disease (GSD) Research

The Nonprofit Organization

The Children's Fund for Glycogen Storage Disease Research is a public, not-for-profit 501(c)(3) foundation that aims to make a difference in the lives of children and their families affected by Glycogen Storage Disease Type 1 (GSD1). The foundation is run by parents, families, and friends.

Glycogen Storage Disease Type 1 is a rare genetic metabolic disorder that occurs when a specific enzyme is either missing or not working properly. This enzyme is responsible for breaking glycogen down into glucose for the body to use as energy. Glucose fuels every cell in our body, including brain activity. Without the ability to access this stored energy, the body's blood glucose levels will drop dangerously low, resulting in severe hypoglycemia, seizures, coma, and potentially death. By awarding grants to the most promising GSD research, The Children’s Fund for GSD Research supports medical advances so that children born with GSD1 will benefit from early detection, treatment, and an eventual cure.

The Challenge

The Children’s Fund for Glycogen Storage Disease Research was established in 2002. At that time, there was little research being done on GSD. Due to lack of education, misdiagnosis, mistreatment, or no treatment at all, children born with GSD1 had little chance of survival. Very few babies born with GSD1 lived more than a few months. The name of the foundation, as well as the look and feel of the website, www.curegsd.org, was created to target families with young children. The goal of the organization was to raise money for research that would enable these children to grow and thrive. Over time, significant funds were raised, education and research increased, and children who were accurately diagnosed were now surviving to adulthood. The organization realized that their audience had changed. No longer just parents of children born with GSD, now they were delivering information to adults living with GSD1 as well as physicians, scientists, and pharmaceutical companies. Updating their approach and information to better match these needs was their first challenge.

“In 2019, we began exploring how to improve our website. We wanted to update our look and feel, make it more user-friendly, and streamline our database. We took our time with the project to make sure the site delivered what we needed, while maintaining the integrity of our data,” said Lisa Hodes, Vice President and Fundraising Chair.

The Children’s Fund for Glycogen Storage Research is the only public charity raising money for research to find a cure for GSD1. Therefore, it is imperative that their website have a wide reach. Their major objectives of a new site included building greater awareness of GSD1, providing accurate and timely information for families of children born with GSD1, as well as for adults living with GSD1, and most importantly, driving donations. This required a complete redesign.

While working through this process, the organization faced an additional challenge. The organization relies heavily on their annual gala in South Florida to spread awareness and raise funds. They have held this event for the last 12 years, with “The White Party”, “Rock the Night,” and “A Night at the Derby”, being some of their most recent themes. Supporters in the Cure GSD community look forward to the event and enjoy coming together to help raise money for this amazing cause. Over the years the gala has generated enough buzz and attention to raise significant funds, typically drawing a crowd of four hundred and raising approximately $300,000 annually for the charity.

Due to COVID-19, the foundation was unable to host their gala in 2020 but missing out on that opportunity to raise funds was not an option. They needed to pivot and find a way to continue their mission. Lisa Hodes explains, “Technology is moving so fast right now. This is the first time we have had scientists knocking on our door to tell us about their novel research, which is very exciting. However, because we are the only foundation raising money to support this work, and our reach is so limited due to the size of our population, we struggle to support their studies. The money simply is not coming from anyone else, so if we cannot support it, the research will not continue. It is essential for us to engage with our supporters, and acquire new donors, so we can take advantage of the opportunities that arise, which we hope will improve the lives of people with GSD1 and eventually, lead to a cure.” Given the challenges everyone was facing at the time, it was difficult to ask their constituents for support, but it was also vitally important to keep the promising research moving forward.

“We were really pleased with the results,” said Lisa, “I set the bar high at wanting to achieve $150,000, but with everything going on in the world, we would have been appreciative of $50,000. To raise $250,000 was extraordinary for us.”

Lisa Hodes, Vice President and Fundraising Chair at The Children’s Fund for Glycogen Storage Disease Research

The Solution

As a longtime Arreva client, The Children’s Fund for Glycogen Storage Disease Research knew that they could reach out to Arreva to help them redesign their website to match a fresh look and feel catered towards individuals living with or recently diagnosed with GSD.

"The thorough website redesign process was extremely valuable to us. We know how important our website is as a key tool for our outreach. It helps us to create awareness for our cause and drive donations to support the research,” said Lisa Hodes, “…We took our time to develop the right vision. Everyone I worked with on the Arreva team played an essential role to delivering a terrific site. They gave suggestions, they listened, and they created and recreated, until it ended up perfect. I couldn’t ask for a better team to support our organization.”

With a brand-new website, but no opportunity to host their annual gala, The Children’s Fund for Glycogen Storage Disease Research again reached out to Arreva for help in setting up a campaign in ExceedFurther®, Arreva’s All-in-One, Digital Fundraising, Donor Relationship Management, and Auction Software solution. The organization strategized with Arreva’s team of fundraising experts to create a “Gift from the Heart Campaign,” which encouraged their supporters to donate whatever they could, even during the Pandemic, so that the important research could continue. This campaign was an email and mail outreach, which was set up within their donor relationship management database in ExceedFurther and sent out at the end of the year in 2020. The organization also added a campaign button to their new website to encourage their visitors/supporters to donate through ExceedFurther. This enabled them to send out automatic thank-you notes to their supporters, streamlining their follow up process and showing their donors that their gift was extremely appreciated and valued.

The Outcome

The Children’s Fund for Glycogen Storage Disease Research “Gift from the Heart” Campaign exceeded their fundraising goals by 66% and raised approximately $250,000 for their research fund. “We were extremely pleased with the results,” said Hodes, “I set the bar high at wanting to achieve $150,000, but with everything going on in the world, we would have been appreciative of $50,000. To raise $250,000 was extraordinary for us.”

The Children’s Fund for Glycogen Storage Disease Research was able to elevate their digital fundraising and donor relationship management through an all-in-one solution with a single, unified database providing them with a 360°view of their donor base, providing them with powerful data, and insights going forward, as well as a new and significantly improved professionally designed website to create even greater awareness and to tell their story with impact to drive fundraising and support.