Exciting times for Spinal Muscular Atrophy

The start of this year has been nothing short of remarkable for all of us in the SMA community. 2011 has brought so much hope from basic research to awareness. Today we as a community are standing on the doorsteps of what could be a defining moment for SMA. Many of us have believed that if we could find a celebrity to support our disease we could finally establish Spinal Muscular Atrophy amongst the general population. We are hopeful that now is that time……

During ┬áthe Presidential election of 2008 President Obama won his bid for candidacy with a new record in the ┬ápopular vote of 65.1 million votes. In season 8 of American Idol the vote count was 100 million votes on the final night alone. In 2008 American Idol’s charitable campaign…….Idol Gives Back ……raised 64 million dollars for charity.

Robbie Rosen has an attachment to our cause. Inspired by Sophia Robbie wrote the song “Make It Through” for the SMA community and recently made time during his busy schedule to make sure he had a chance to visit Sophia for her second birthday. When we were newly diagnosed and Robbie first heard about Sophia he was very moved. The entire Rosen family has become so close to ours. Matt Rosen (Robbie’s dad) and I speak quite frequently. During one of our conversations Matt had told me getting to know Sophia’s soul…….not just the story of this little girl, has left an impression on his life. Robbie thinks of Sophia as a little sister. This is his cause!

Recently KJOY radio did a piece on Robbie and discussed his connection with Sophia. It is amazing how it is already raising so much awareness about our disease. Regardless of what organization in the SMA community everyone will see a benefit from the awareness this could bring to our disease. Imagine at fundraisers throughout the country not having to explain what SMA is……..but having people donate because they have already heard about the disease. We ALL benefit…..the entire community.

Tonight is an important night the power shifts out of the judges hands and into the control of the viewing audience. If Robbie makes the final cut we must start to raise awareness immediately amongst our friends, families and local communities. We must start to rally the troops……something we have shown the ability to do. As I watch tonight on the edge of my seat with fingers crossed………………………………..I can’t help but to imagine what tomorrow may bring.

Comments

  1. Christine Hicks says:

    This is just absolutely amazing. What an exciting time for Robbie and all of us. God bless
    Sophia, Robbie, and all SMA sufferers. GO ROBBIE!!!!!

    • Elva I. Soto says:

      My one year old grandson has just been diagnosed with MSA. There are so many doctor appointments and so much to learn and to do for him.
      I had never heard of MSA until Matthew was diagnosed.
      Thank You Robbie!!!!

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