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Pepsi Refresh Project; Cure JM in 4th Place!

Pepsi Refresh Project; Cure JM in 4th Place!

Introducing the Pepsi Refresh Project. Pepsi i...
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I posted earlier about Cure JM having a chance at a $250,000 grant from Pepsi and we still do! Voting is open until the end of August. In July we were in 12th place and as of today we are in 4th. Woot Woot!!  The top two will each receive the grants.  This is so amazing, it is truly within our grasp if we all vote and pass along to our friends to vote too.  Will you please take a moment and text to vote, stop in at Facebook and vote and please ask your fb friends to do the same.  It is such a worthwhile cause, I know firsthand the pain and crippling effects this disease has and I can’t even imagine a child having to go through any of it.

To find out more about Juvenile Myositis and the organization Cure JM, check out the video and follow the links below to vote. Pepsi is giving us an amazing opportunity to help our kids with JM and we are so close! Thank you to all of you who are following this and voting. God Bless!

A message from the facebook group:

Thanks for making a difference by helping Cure JM move into 4TH PLACE in the Pepsi Refresh contest, where we are competing with over 400 organizations for a $250,000 grant.

We need to be in the TOP TWO at the end of August to win this grant. Every penny of this grant will go towards research, including an important JM genome study and a cardiovascular risk study in patients with JM. The remaining funds will go towards the Cure JM Program of Excellence research center in Chicago.

We would like to share a recent Facebook post from a JM family, who has played an integral role in the Cure JM Foundation:

“Know how I remember to vote everyday???….Inserting Mason’s feeding tube, giving the IV meds he needs this morning to keep him alive, plus the other meds used to strengthen his depleted bones, and the meds to lower his blood pressure so his enlarged, calcinotic heart will hopefully get better; replacing the pain patch…”

Please vote so that Mason and all of the children with JM can have hope for a better future. Vote THREE times each day, everyday to help Cure JM:

– Text Vote to Pepsi (73774) Type: 100850 to vote *(Stnd txt msg rts apply)
– Vote via FB app: http://www.facebook.com/l/0a580WbtmPvlJZ9FqZauzEfO3eg;bit.ly/CureJMonFB
– Vote for our entire “Kids to Win” team at: http://www.facebook.com/l/0a5806ZfUlE2jdhvEYHUpKnXhvA;pep.si/CureJMKidstoWin4

Sign up for Daily Voting Reminders (and be entered into a contest to win a FREE iPad if Cure JM wins!), please register here: http://www.facebook.com/l/0a580eNdDWUEzr_ZtywByGjqW2w;www.curejm.org (Note: Names and emails will NOT be shared with anyone and are only used for daily voting reminders).

Cure JM Partners in Pepsi Gulf Projects
These groups in the Gulf Projects category are heavily supporting Cure JM. Thank them by using your additional votes in the Gulf categories, which are completely separate from the “regular” Pepsi Refresh voting. Voting links for the three groups we have aligned with are as follows:
http://www.facebook.com/l/0a580NC02G4Vkimv5W1P6uJBcgA;gulf.refresheverything.com/plci
http://www.facebook.com/l/0a580iI6HECgEjWhCqQJHh4J3Kw;gulf.refresheverything.com/mhc
http://www.facebook.com/l/0a580W_EmhYhDIGCaajmFqVCDLw;gulf.refresheverything.com/homesofhope2

Thank You Rob Thomas for giving us Her Diamonds!!

Thank You Rob Thomas for giving us Her Diamonds!!

I am so glad I saw something about this on Facebook.  Here is an excerpt from the bio on Rob Thomas’ website:

The album’s first single, the kaleidoscopic “Her Diamonds,” is the most personal song Thomas has yet committed to disc. Rob’s wife Marisol is courageously battling an autoimmune disease, and “Her Diamonds” was written “about a couple dealing with that on a day-to-day basis,” explains Thomas. “There’s an incredible amount of sadness that comes with something like that. There are moments where I think I flirted with a thinner personal line than I’ve ever done before, but, really, I’m writing a song about how people deal with hard times, and that hard time is universal, that hard time can be anything.”

That gift of turning the personal into the universal has long been a hallmark of Rob’s work. “If I can take a specific moment in my life and write about how that moment makes me feel – not about the moment, but the way the moment makes me feel, all of a sudden I’m in a territory where a lot of people can understand that. A lot of people understand that feeling; they have other things in their life that make them feel that way. If I write ‘3am’ about my mother dealing with cancer, that’s a very specific moment, but if I write about how that made me feel, then it opens up and it becomes a universal moment.”

I went to the site and watched the video “Her Diamonds“.  Wow.  Writing a song about his wife’s illness and how it feels is really intimate and I’m so glad he did it.  It opens up conversation about autoimmune disease to his fans.  What is it?  Which one does she have? etc.  It must have been hard to open up their personal life and talk about his wife’s battle with autoimmune disease and how it affects both of them.  I wonder if she wanted him to, to help the cause.  I wish I could say thank you to him personally, I can’t so I will just say it here.  Thank you, from the bottom of my heart-thank you.  My husband and I watched your video and were both so touched.  You nailed it right on the head.

I’ve always said if more famous people would speak about autoimmune disease, the population would be soon asking questions about autoimmunity.  We really need more press and exposure.  A lot of you know that there have been no new meds for lupus in 50 years.  That’s just inexcusable.  That’s just one example of how autoimmune diseases are at the bottom of the barrel when it comes to exposure, research dollars, and just plain understanding.  How many people live with the pain and fear of their body’s attack on their body.  Even that sentence doesn’t seem to make sense.  None of it does.  It’s so random.

Done, off my soapbox now.  This is a video of Rob Thomas performing this song Her Diamonds live on the Ellen Show.  To see the video of the song, you can go to his website at www.robthomasmusic.com and click on the videos tab, or just click here.  🙂


 

 

*******UPDATE*******I added his video, Her Diamonds to my vodpod on the left side of the blog.  It is the first video in the lupus vids.  Have fun!!  Even though I want everyone to hear this song and talk about it, the song kicks ass. It doesn’t need a small town blogger trying to sell it.  Enjoy!

 

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