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  • hopeforheather

    I'm glad to have this post. I'm not sure if this is your blog or just a guest post. I am new to advocacy, fundraising, giving back, raising awareness, NOT feeling isolated, etc. etc. AND new to this blog. :) All the best to your son.

  • Katie Surfleet

    I pray for your family and Eldon's health on a daily basis, Shannon! You are forever in my thoughts and heart! We love you guys! We hope one day a cure will be found for all those suffering from this disease!

  • marathonmom

    Shannon, we are so fortunate to have you as a part of Cure JM Foundation, working tirelessly to win this CrowdRise $100,000 Holiday contest. And, just as important, throughout this contest, we have all become closer as a Cure JM family as we connect more frequently and bond together to raise the critical funding for research.
    We are more determined than ever to find a cure for our kids!

  • Christina Monrad Norris

    This is so wonderful that you turned your sons curiosity of the disease and had him helping to support finding a cure for his disease. My daughter just turned 5 and she was diagnosed with Juvenile Polymyositis at 3 years old. I have found no one that has this disease this young of an age. I only find adults or older kids with JPM. I can only find kids with Juvenile Dermatomyositis thats my daughters age. Thank you for posting this.

    • marathonmom

      Hi Christina, Please check out the Cure JM Foundation that Shannon mentions in her blog.
      We have been working tirelessly to find a cure for ten years now, and to provide support for families like yours who are battling this disease. Please register in our patient registry and you will be connected to a Family Support Network Rep who will send a packet of Cure JM materials to you, including awareness bands to help you raise awareness.

  • Annie_M8

    An excellent article on how isolating for patients rare diseases can be and how underfunded in research rare diseases are. It also emphasizes how important mutual support from the Juvenile Myositis community is! We are truly so much stronger together!

  • Susan Merrin

    This is a great article and really gets to the point of why we need to raise awareness and funds for research. Little boys like this should be out playing not sitting selling hot chocolate to raise money so they might one day have a cure for their disease.