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Archive for the ‘Hope Rising’ Category

Today is Purple Day. And what is that, you may ask? Purple day is in support of Epilepsy Awareness.

Wear Purple for Epilepsy Awareness!

And in honor of this day, I have a special treat.

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Even though mito sucks, I have seen enormous strength in people who refuse to give up, people who follow their dreams despite – even in spite – of mito.

Just over two weeks ago saw the album release of my dear friend Stefani. The culmination of five years of her hard work and four months of my own. It was a huge success. We sold around 100 CDs and raised over $200 for UMDF and IDF through donations alone (she also donates a portion of each CD sold to the aforementioned charitable foundations).

The day after, we heard from a mutual friend. Her 10-year-old daughter Emma also has mito. While listening to the album, Emma found out that Stefani had mito, too. Her response? “Oh wow, now that means that I can follow my dreams too.”

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The last 3 months I’ve been busy. Really busy. I’ve logged over 200 hours expanding my knowledge of Photoshop (something with which I had virtually no experience prior to last May), relearning html/css/java, and taking in whatever I could about music and distribution to help my dear friend Stefani get her message heard. Because she’s amazing. Her music is inspiring. And I think everyone else should be given the chance to connect with her music as I have.

It may not be your “cup of tea,” so to speak, but you can’t deny what an amazing journey she’s led. Like me, she has mitochondrial disease. She not only deals with her own disease with dignity, but she also cares for her two young children who have their fair share of medical difficulties. And yet despite this, she reaches out to others in need, whether through her positions with IDF and UMDF or by sharing her lunch to the homeless man on the pike off-ramp. Now, she’s sharing her hope through this CD which speaks of her 5-year journey. I feel honored to call her “family.”

Her debut CD, Hope Rising: The Journey, is now available for pre-order through her website and will be delivered sometime after her release date of November 19th. While you’re there, you can take a gander at some of the help I’ve been lucky to share (the CD cover and insert, her Release Party announcement, and the website itself). And if you encounter any issues with the site, please let me know. It’s still a learning experience and I love getting feedback!

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Last weekend, I helped put on a patient education meeting for the mito community. The meeting was incredibly productive and I am so incredibly grateful and blessed to have had some amazing friends to help us put it together. In preparation for the meeting, I put together a montage video with a song on my good friend Stefani Bush’s upcoming album, Hope Rising. Hope Rising will be released in November. If you’d like to order a copy, let me know!

The majority of the pictures were given to me over a the last few months to support the efforts of UMDF; others were taken at UMDF-sponsored events. I’m very grateful to all of those who shared with us. We hope the video inspires people to not live only to become victims of the disease. Rather, we hope you’ll join us in our efforts and on our journey. Because you, too, can be part of the cure. For more, please visit umdf.org.

PS I forgot to add one of my pictures on my last blog. Take a look!

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