Over the past three years, The Herald Group has partnered with A Cure For Ellie, a non-profit organization dedicated to finding a cure and creating awareness for LBSL.
The organization draws its name from Ellie McGinn, a young girl from Virginia, who was diagnosed with this rare disease, Leukoencephalopathy with Brain Stem and Spinal Cord Involvement and Lactate Elevation (LBSL), in September of 2011.
Ellie’s parents, Beth and Mike, have dedicated their time and resources to figure out ways to raise awareness for LBSL, including lobbying Congress in an effort to educate them on their daughter’s rare disease. THG realized that they could offer their PR experience, resources, and connections to their family and provide the professional support necessary to take the organization’s cause to the next level.
THG has spearheaded multiple initiatives for the non-profit including:
In a world that is being constantly bombarded with media, it has been a challenge to share the non-profit’s mission and secure the attention of both policymakers and donors. The tried and true methods of garnering media interest and spreading awareness have played a part in our strategy, but we felt that Ellie’s extraordinary strength and bravery was deserving of an equally extraordinary campaign.
The most successful of these strategies was the “The Ellie Challenge”. The social media challenge invited family and friends to attempt to correctly state the name of her disease for a chance to rename it with something easier to pronounce.
The campaign exceeded all expectations as the large number of participants in the challenge included those affected by LBSL, families from all over the globe, and three U.S. Senators. This campaign helped the McGinn family raise $25,000 directly funding research for a cure for LBSL. These funds all directly go to finding a cure, supporting critical research at the Kennedy Krieger Institute in Baltimore. Ellie also successfully renamed her disease, LBSL, to the “Awesome Disease” chosen by third-grader and classmate Lucas.
In addition to these extraordinary funds raised, the challenge increased awareness of this rare disease by drawing vital media attention from The Hill, Roll Call, ABC News National, a podcast with over 25,000 downloads per month, and D.C. lawmakers alike. In addition, Ellie was recently chosen as an honoree for the NORD Awards in Washington, D.C., which will draw additional national attention to both LBSL and the search for a cure.
Ellie’s family has witnessed firsthand the positive impact a well-crafted PR and communications strategy can have on an organization, and even more importantly the positive impact at a personal level. By sharing her story and being an advocate for those who share her disease, Ellie has directly helped at least five other families who are affected by LBSL. These families are experiencing positive results from a “medical cocktail” that Ellie herself has benefitted from.
Though we typically work with organizations and companies in highly regulated industries, leveraging our skills and knowledge for A Cure For Ellie has been rewarding beyond measure. Whether you’re a trade association or a small non-profit, clearly communicating your narratives in a concise and effective manner is critical to achieving your mission.