Having a rare disease makes us different. Making an impact in the minds of children by helping them understand what it means to be different through charitable acts is inspiring.   When we are also able to influence our children about the importance of what it means to have a rare disease and come together as a community as part of the process – we are truly helping each other.  When we come together for RARE, we can make all the difference in the world for those struggling with rare disease.

Emma Foster – Rett Syndrome

In Lake Zurich, Illinois – they are truly making a difference.   Two Hearts Rock, a local nonprofit who specializes in music events benefiting RARE Disease, and the school student council of Spencer Loomis Elementary School are encouraging  their students to make an impact on rare disease.  Through collaboration with the school and a parent, former teacher of Spencer Elementary, students are participating by purchasing and making denim ribbons in support of RARE Disease Day.

Mrs. Colleen Foster, a parent and former teacher of Spencer Loomis became acquainted with rare disease when she learned her 3-year-old child, Emma was diagnosed with Rett Syndrome in 2011.  On February 29, Dollar Denim Days will take place in an effort to raise funds for research and awareness of Rett Syndrome, a rare disorder of the nervous system.  Students are also being encouraged to wear their jeans in support of the Global Genes Project.

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