Press Release // LEAP Sessions on Rare Disease Day

Washington, DC – Rare Disease Day was established in Europe in 2008 by EURORDIS, and is now celebrated around the world on the last day of February each year. The purpose is to raise awareness of rare diseases as a public health issue.

Some 5,000 to 7,000 rare diseases, including rare cancers and genetic disorders, affect nearly 30 million people across the United States – and as many as 350 million people worldwide.

On Rare Disease Day US 2012, Wednesday, February 29, MarbleRoad will be holding a benefit concert, LEAP Sessions, to raise funds to support its mission: connect people who have complex illnesses with the resources they need to help them improve their lives. MarbleRoad has been working with the campaign IndieMatch, a group which engages independent artists and musicians in philanthropic opportunities. Grab your tickets now! Visit leapsessions.eventbrite.com.

Joseph LaMountain, a member of the MarbleRoad Board of Directors, President of SparkLight Communications, and adjunct professor at Georgetown University said “Individual rare diseases may not be common, but together they comprise a large number of diseases that affect a significant size of the population – 1 in 10 Americans is affected by some type of a rare disease. Families affected by most rare diseases face similar challenges: getting a diagnosis, access to treatment and so on. That is why coming together on Rare Disease Day to raise awareness is so incredibly important.”

DC local blues sensation Jonny Grave and the Tombstones will be headlining LEAP Sessions, along with other local performers Benny, and Linsay Deming (of SweetBread Jim’s). Also performing will be Nelly Kate, from Richmond, VA, who recently held a successful KickStarter campaign to release her album “Ish Ish”; an album which commemorates the memory of people who have suffered and struggled in genocides around the world. Two Brooklyn-based bands, SoftSpot and Caged Animals, will also be performing at LEAP Sessions, as they work their way down towards SXSW, the annual music, film, and interactive conference and festival held each year in Austin, TX. Caged Animals has recently been featured as “New Band of the Day” on The Guardian and with a Stereogum Premiere.

Check out more videos from LEAP Sessions performers recorded 2/18/12.

Brandon Wetherbee, the producer and host of the talk show You, Me, Them, Everybody will host the event at The Dunes, a mixed media venue located in the center of Columbia Heights. The Dunes is operated by The Dunes Fund LLC, a DC-based creative marketing collective. The Dunes Fund LLC reinvigorates the brands of for-profit and non-profit organizations in collaboration with creative talent from all media.

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MarbleRoad is a non-profit, 501(c)(3) public charity incorporated in Washington, DC to support families affected by complex illness. A complex illness can be persistent and substantially disabling or life threatening, and requires treatments and services across a variety of domains of care to ensure the best possible outcomes for each unique patient. MarbleRoad focuses on rare or undiagnosed diseases and the needs of community health center patients who seek specialty care services not offered by their primary care providers. www.marbleroad.org

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~ by marbleroad on February 22, 2012.

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