Performing for a cause is different than the average concert; there’s a certain appeal philanthropy brings to a musical experience. Musicians can’t be stereotyped as self-promotional or egoistical; instead, they’re lending their voices as a catalyst for change, creating new pools of potential fans and interested attendees. The LEAP Sessions event this Wednesday, Feb. 29th, presented in partnership with Listen Local First (LLF), sheds light on the relationship between philanthropy and music. No, it doesn’t have the publicity of Bono and the ONE Campaign, but it’s a microcosm for the power of 21st century art and advocacy.
Howard Liebers, founder of MarbleRoad, followed the typical path of many DC transplants: college, then an entry level position at a non-profit, and ultimately a director level position working in health policy with the DC Primary Care Association. As a young professional in DC, Howard was a driven 9-5er, using his free time to map his love for indie pop culture around the city. But, unlike most DC dwellers in their early 20’s, who are slowly making their way out of the Adam’s Morgan bar crawl, Howard was unexpectedly faced with the death of one of his closest friends, Craig Nolan. Prior to Craig’s death, Howard didn’t know anything about “rare diseases”, but after Craig’s tragic experience with a rare cancer, a type of non-Hodgkin’s Lymphoma, Howard became passionate about learning more about this issue – what qualified, who’s affected, and how society addresses these health issues. What he discovered was extremely disheartening.
Firstly, it’s difficult to be diagnosed correctly if you have a rare disease because of the disconnect between primary healthcare physicians and rare disease specialists. Rare disease researchers are often siloed within their own specialties with limited patient interaction. The general knowledge base of primary care physicians often cause rare diseases to go undiagnosed and subsequently untreated. Additionally, since rare diseases in the US are defined as diseases affecting less than 200,000 people, there is little financial incentive for pharmaceutical companies to invest in research. Treatments are often extremely expensive and unaffordable.
In 2010, Howard Liebers incorporated the organization MarbleRoad here in DC, and saw an opportunity to integrate his love for indie culture with his newfound passion for rare diseases. MarbleRoad utilizes a campaign called IndieMatch to raise funds to support its mission. The IndieMatch strategy seeks to develop strategic partnerships between independent artists and musicians to support philanthropic opportunities. Using this model, MarbleRoad launched a kickoff event on Make a Difference Day in 2010, held in Alexandria, VA, featuring donated artwork by David Foox, Meredith Towsand, Elizabeth Jameson, Regina Hooliday, and Vesna Jovanoic, and Julie Gideon-Smith. In 2011, MarbleRoad hosted the Flammable Heart Exhibition during National Health Center Week, displaying collections of artwork at the Lyons Wier Gallery in New York City, in partnership with Lutheran Family Health Centers, a Federally Qualified Health Center in Brooklyn. Money raised for the organization goes towards subsidizing rare disease treatments and bridging the communication gap between rare disease specialists and primary care physicians.
Fast forward to 2012 – MarbleRoad’s third event, but the first ever “LEAP Session”. By now, it’s not difficult to see why MarbleRoad and Listen Local First have partnered for this debut. In contrast with previous MarbleRoad events, LEAP Sessions brings together indie musicians (not artists). Yet, the IndieMatch concept still holds strong. As an advocate of the local music scene, LLF is bringing together some of DC’s best artists and bands, and introducing some new acts to the excitement of the DC music marketplace: Nelly Kate (Richmond), Linsay Deming (DC), SoftSpot (Brooklyn), Caged Animals (Brooklyn), Benny (DC), and Jonny Grave & The Tombstones (DC). Together, IndieMatch and Listen Local First will be able to connect individuals through music and philanthropy by showcasing local talent and raising awareness for rare diseases.
The first of many to come, these LEAP sessions will be held annually on the last day of February. (Rare Disease Day is always held on the last day of February – the fact that Feb. 29th only happens once every four years reflects the low incidence rate of rare diseases, hence the name – LEAP Sessions: a rare day for rare disease.) Deidree Bennett, Managing Director at the Dunes, shares her excitment:
“As managing director of the Dunes, and I’m looking forward to the LEAPSESSIONS event on a very personal level; I suffer from a rare
hereditary form of Primary Lymphedema. Therefore it is my pleasure to
welcome MarbleRoad to help spread awareness about the more that 6,000 rare diseases in the U.S., and the people with them who need your
support. Here is my story.I look forward to hearing your stories, and rocking out to Benny, Jonny Grave, and everyone else Wednesday night from 7:30 – 11:30 PM at The Dunes. Be a Rockstar!” http://leapsessions.eventbrite.com/