The Children's Fund for Glycogen Storage Disease (GSD) Research
The Nonprofit Organization
The Children's Fund for Glycogen Storage Disease (GSD) 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 GSD1. The foundation is run by parents, families and friends.
Glycogen Storage Disease (GSD) is a group of rare genetic disorders caused by enzyme deficiencies. These enzymes are responsible for storing or breaking down glycogen into glucose for the body to use as energy. 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 GSD will benefit from early detection, treatment, and an eventual cure.
When The Children’s Fund for Glycogen Storage Disease Research was founded in 2002 there was virtually no research happening and a lot of the children with GSD passed away due to this disease for a number of reasons, including misdiagnosis, and lack of educational resources and dietary research. The organization launched their initial website at www.curegsd.org, as a very child-friendly site, gearing the information towards a younger audience. However, over time, as significant funds we’re being raised, children that had access to the research and proper diagnoses were now living with GSD and getting older. The organization realized they needed to update their approach and information to better match their audience needs.
“In 2019, we began exploring how to change our whole website, but were admittedly really taking our time with the project because we had 17 years of data to transfer over and wanted to make sure we could do so in a way that not only maintained the accuracy of our data, but also simultaneously cleaned up our data, “said Lisa Hodes, Vice President and Fundraising Chair.
Since The Children’s Fund for Glycogen Storage Research is the only public charity raising money for research to find a cure, major objectives of their website include building even greater awareness of GSD, providing accurate and timely information for families with children or adults with GSD, and driving donations. To do so, completely updating their website was their first challenge. An additional challenge the organization faced at the time, was related to fundraising. The organization relies heavily on their annual gala to fundraise for the research. Up until 2020, they had held an annual themed dinner/gala event for the past twelve years, with Hard Rock “Rock the Night,” Derby, and Speakeasy being some of their most recent themes.
Over the years this event has generated enough buzz and attention to raise significant funds for the research, and typically drew a crowd of 400 and raised around $300,000 for the charity. Supporters in the Cure GSD community look forward to the event and enjoy coming together to help raise money for an amazing cause. Due to COVID-19, the foundation couldn’t host their gala and they needed to pivot and find a way to continue to raise the funds to fulfill their mission. Lisa Hodes explains, “Technology is moving so fast right now. This is the first time we’ve had pharmaceutical reps knocking at our door to learn more about the research we’re funding, and we haven’t had that before so it’s super exciting. However, at the same time, we must have the funds to help support continued research. If we don’t, it is simply not coming from anyone else, so the research will not happen. It is absolutely essential for us to engage with our supporters, and acquire new donors, so we can take advantage of the opportunities that arise for more research, which can hopefully lead to a cure.” While it wasn’t easy to ask for donations from their supporters, given the challenging time everyone was facing at the time, they knew how essential it was to do so, because without the funds raised from the foundation, it would become increasingly hard to continue the research.
“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 at the time we would’ve been appreciative of even $50,000 so to raise $250,000 was a huge win for us.”
Lisa Hodes, Vice President and Fundraising Chair at The Children’s Fund for Glycogen Storage Disease Research
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 new 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 and for helping us to create the awareness for our cause that can be supported with the funds to support the research,” said Lisa Hodes, “…and even though I elongated the process through extensive research on other children’s charities so we could find the right look and feel for our vision, everyone I worked with on the Arreva team was amazing in getting it done and delivering a terrific site. They gave suggestions, they listened to me, and they created and recreated what I wanted multiple times, 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 “Give from the Heart Campaign,” which encouraged their supporters to still 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, which enabled them to send out automatic thank-yous to their supporters, streamlining their follow up process and showing their donors that their gift was extremely appreciated and valued.
The Children’s Fund for Glycogen Storage Disease Research “Give 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 at the time we would’ve been appreciative of even $50,000, so to raise $250,000 was an extraordinary, huge win for us.”
The Children’s Fund for Glycogen Storage Disease Research Fund 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.