Pavlo and Children - Batten's Disease

Batten Disease 
 
Since being named the official North American spokesperson for Batten Disease, Pavlo has invited affected children and their families to enjoy an evening of Mediterranean music if they find a concert listing conveniently near their home.

Batten Disease (Neuronal Ceroid Lipofuscinosis or NCL) is a very rare degenerative brain disease that affects children.  There are 3 major forms of the disease:  Infantile; Late Infantile and Juvenile. Batten Disease is always fatal.  For more information, or to make a donation, please visit their website: http://www.bdsra.org  

Pavlo's work as a spokesperson is to bring awareness about Batten Disease to people who may not otherwise have heard of it.  This awareness could lead to donations, which funds more research that will hopefully lead to a cure.
"I like to think of my concerts as mini-Mediterranean vacations, so it's important to me that my audience is there to enjoy the evening without being brought down.  Usually, I do mention that I am proud to be the official
spokesperson, but I let the audience go to the website for more information if they choose to."

Pavlo was first introduced to Batten Disease through the loss of his niece, Brittany Mastronardi.  Her memory inspired him to write the song, BriAnje.  Click here for more.

"I found it remarkable that although this disease attacks the brain, these children never lose their sense of hearing, and commonly, they are all very passionate about music.  Every time I meet an affected child, I am inspired by their enthusiasm.  I am honored to be a part of a mini-getaway and making a small memory that these children and their families get to keep forever."

To view pictures of Batten Children enjoying a Pavlo concert, click here.
 
The song, BriAnje, is available for a free download here.

Affected Families are invited to contact Amy Kirk - BDSRA Coordinator of Family Services, for concert tickets at:
1-888-379-2546
740-927-7683
kirka@bdsra.org