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Grace, Flora and Ingrid:
Cure JM Jump 'n' Jive
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The volunteers assembled early, special t-shirts on, while musicians and organizers ran back and forth between the stage and foyer. It was a rainy, blustery Saturday, one more reason to come inside, dance, enjoy music and food for the first Jump & Jive 2 Cure JM benefit.
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| (From Left) Dr. Kristin Hayward, Suzanne Edison, Ingrid, Flora and Grace |
Jump and Jive to Cure JM came out of a desire to give back to the JM community, a way of thanking CureJM for the emotional support, crucial medical help and resources and ongoing commitment to find a cure for this rare disease that our children share. I started out with a vision of something fun and uplifting for kids and families that would raise awareness and financial support. I asked Jennie and Jeanette, other JM moms, to be part of this vision and they readily agreed.
Recess Monkey, www.recessmonkeytown.com, a popular, high energy kids band, known within the larger community, agreed to play the event for a reduced fee. The music was infectious, kids and grown-ups snaked through the room and onto the stage following a band member, at the performance’s end.
For door prizes, Walgreens and Sun Precautions both donated gift certificates, as did a local toy store, game designer and Nokia. The door prizes were a big hit. Kids insisted on staying until the end, crowding the stage in hopes their number would be called.
Ingrid’s mom Jennie, a photographer and videographer, put together a video of our kids. She also secured a D.J. for the older kids portion of the Jump & Jive event, and with a graphic designer friend, did all of the PR materials. All of these folks contributed their services for free. In most cases people offered their time and expertise because they knew Flora, Ingrid or Grace and our families and wanted to help. One friend, a former reporter at a local TV station organized our TV news report and helped expand our media coverage. Grace’s family agreed to be filmed.
http://www.king5.com/video/childrenshealthlink-index.html?nvid=287260&shu=l
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| Flora and friend with bracelets and necklaces |
Acknowledging the staff and doctors in the Rheumatology Department of Seattle Children’s Hospital where our kids are treated, and which serves a 5 state region, also seemed important, lending more gravity to the situation. The kids made an award and one of the doctors came to the event to accept it.
We planned for 100-150 people on the day of the event but ended up with over 200 people in the room and ran out pizza. Everyone danced, ate, watched the 5 minute video and listened to Dr. Hayward talk about the need for more doctors in this field.
From online donations, checks written the day of the event and from after event contributions, we have now raised over $15,000. ( Including the $10 Flora made selling her bead necklaces and bracelets. She even made special Help Cure JM beaded bracelets that went very fast! )
This event grew beyond my dreams, connecting several new JM families to CureJM. Many parents reported that their children learned a lot watching the video. We were all gratified by having others better understand what our kids are going through, by feeling supported by friends and family and by giving hope to our children. A cure for JM is our goal, but we need to celebrate and bring joy to our lives along the way.
-- Written by Suzanne (Flora’s mom)
