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Melissa Hogan
Melissa Hogan
RDR Contributor
Melissa Hogan is a lawyer, author, and speaker on behalf of rare disease families. She is the Founder and President of Saving Case & Friends, a Hunter Syndrome research & advocacy foundation, and writes and speaks on rare disease topics, including the SavingCase.com blog that is read in over 100 countries. She also speaks about the role of social media in rare disease, serves on the external advisory board for the Mayo Clinic Center for Social Media, and coordinates the Hunter Syndrome Research Coalition. She recently produced and released a powerful social media-based awareness and fundraising campaign at ProjectAlive.org.

#WhenIGrowUp - with Jared Leto

Friday, July 10, 2015
Answering the question ‘What do you want to be when you grow up?” can lead to some funny and cute moments when you ask a child that. But if you ask a child with Hunter syndrome that same question, the answer may surprise you—they just want to be alive when they grow up.



That plea has garnered the attention of many celebrities in support of a crowdfunding campaign - ‘Project Alive’ - that is raising funds for research to cure the rare disease Hunter Syndrome.

The most recent celebrity is academy award winner Jared Leto who provided a nice introduction to the Project Alive video. Jared joins Pete Carroll, head coach of the Seattle Seahawks, top radio host Dave Ramsey, Papi Le Batard from ESPN’s “Highly Questionable,” Emmy-winning former ESPN commentator Roy Firestone, Hollywood studio executive Jon Berg, and social media savvy pediatrician Wendy Sue Swanson (@SeattleMamaDoc) in support of Project Alive.

Nashville filmmaker David Kiern partnered with parents of children suffering from Hunter Syndrome to create a powerful and tear-jerking video contrasting children dressed up as doctors, singers, basketball players, and police officers, adorably expressing their dreams, with boys who slowly lose the ability to walk and talk with a life span in the teens.

The celebrity supporters didn’t know about Hunter Syndrome until families reached out to them, because it’s so rare that it only affects approximately 2,000 patients worldwide. Hunter Syndrome, also known as Mucopolysaccharidosis II, causes progressive physical damage to the heart, bones, joints, airway, and nervous system. In most cases, it also causes progressive mental decline and challenging behaviors, with a life span in the early teens.

The campaign asks viewers to give $1 for every healthy child in their life and to share the video and dreams of what they and their children want to be with the hashtag #WhenIGrowUp. It is sponsored by Hunter Syndrome nonprofit Saving Case & Friends and is using the funds to support research using gene therapy, the closest thing to a cure for the condition. The parent-led leadership team has been working with researchers for the last three years to fund the research and progress to this point, but now are facing a large financial hurdle to reach the next stage – human clinical trials. They are looking to raise $5 million to fund the clinical trial.

To view the video or other parts of the campaign, including the celebrity videos, or donate to support their efforts, visit ProjectAlive.org. Also, follow @ProjectAlive on Instagram and @SavingCase on Twitter for updates.

Media Contact
Melissa Hogan
press@projectalive.org


 

More from Melissa Hogan
Courage is a word you hear frequently in the world of rare diseases. Courageous kids battling a horrible conditions. Courageous parents fighting for treatments and, in some cases like John Crowley, Karen Aiach and others, starting their own biotechnology companies to develop treatments for their kids. But with those exceptions, you don't often hear courage associated with the pharmaceutical companies who serve rare disease patients, or the FDA who approves rare disease drugs.
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When a loved one is diagnosed with a rare and terminal disease, some of us write. We write both to help others and to help ourselves. And sometimes, the writing is quite personal.
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It's funny how when you're very focused and steeped in a perspective, you think that everyone around you shares it. That's kind of how I am about social media. I have multiple accounts on Facebook, Twitter, Instagram, and YouTube, adding to that Pinterest, Vine, Google+, and the new and ever-so-cool Periscope.
2 years ago
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It's time for conferences, especially those in rare disease, to step into the 21st century with the rest of us. What I'm talking about is social media, and its integration into the fabric of conferences.
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