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Prosper Parents Help Launch Project Alive Campaign, Frisco Enterprise, 6/20/2015
Letter to the Editor: Learn About Hunter Syndrome, Miami Herald, 6/11/2015
Prosper parents help launch Project Alive campaign for children with rare disease, Celina Record, 6/10/2015
Boy’s Family Seeks Donations to Fight Rare Disease, Buffalo News, 6/10/2015
In the Media
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FOR IMMEDIATE RELEASE
Summary: Parents of children with the rare disease Hunter Syndrome are launching a compelling awareness and fundraising campaign this week that is expected to sweep through social media. The video at ProjectAlive.org will make parents think about the luxury of their children having dreams about what they want to be when they grow up.
NASHVILLE, TN – Every child dreams of what they want to be when they grow up. But imagine if your child’s greatest dream was not to be a doctor or lawyer, but instead, they just wanted to be alive when they grew up?
Local filmmaker David Kiern partnered with parents of children suffering from the rare disease Hunter Syndrome to create a powerful and tear-jerking campaign based on that concept that is expected to sweep through social media. It contrasts 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 campaign is so powerful that it has already garnered some celebrity support in the form of video clips about what prominent people, such as Pete Carroll, head coach of the Seattle Seahawks, wanted to be when they grew up. The campaign also features similar clips from top radio host Dave Ramsey, Emmy-winning former ESPN commentator Roy Firestone, Hollywood studio executive Jon Berg, and social media savvy pediatrician Wendy Sue Swanson (@SeattleMamaDoc).
These celebrities didn’t know about Hunter Syndrome until families reached out to them, because it’s so rare that it affects only 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 shortened life span of in the early teens.
So when local parent Melissa Hogan received a picture from her son’s kindergarten teacher that said he wanted to be a fireman when he grew up, she knew she had the makings of a powerful awareness and fundraising campaign. She notes, “When I first saw that picture, my throat caught, because all I could think about was him being alive, not being a fireman. That’s when I knew that it would resonate with people, because as parents, we all watch our children dream about all the things they want to be when they grow up.”
The video at ProjectAlive.org features four families affected by Hunter Syndrome, including the Hogan family from the Nashville area. It was filmed in Spring Hill, Tennessee, and outside Indianapolis, Indiana, bringing together four families that normally don’t cross paths in everyday life, because the disease is so rare. None of these families lives near one another, but they connect on social media almost daily.
The campaign asks the public 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 local nonprofit Saving Case & Friends that is currently trying to fund a clinical trial of gene therapy, the closest thing to a cure for the condition. The parent-led leadership team at the nonprofit have been working with researchers for the last three years to progress to this point, but now are facing a large financial hurdle to reach the next stage – human clinical trials.
To view the video or other parts of the campaign, including the celebrity videos, visit ProjectAlive.org or follow @ProjectAlive on Instagram.
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A quick walk through the history of Project Alive and its sponsor, Saving Case & Friends
Location: Thompson’s Station, TN and Virtual
Size: 9 current board members
Board Members: Melissa Hogan, J.D. (Thompson’s Station, TN), Jamie Fowler, Ed.S. (Mundelein, IL), Sarah Mitchell (Westfield, IN), David Adams (Nashville, TN), Jennifer Boyd (Franklin, TN), Jennifer Carter, M.D. (Stratham, NH), Gabe Colmenares (Bayside, NY), Mike & Angie Hoover (Smyrna, TN), Deb Purcell (North Vancouver, BC).
History of Project Alive: Project Alive originated from a photo sent home in 2o13 by Ms. Kimberly Moore, a kindergarten teacher at Spring Hill Elementary School, Spring Hill, TN with Case Hogan, one of her students who lives with Hunter Syndrome. The photo inspired Case’s mom, Melissa Hogan, President of Saving Case & Friends, who was so moved by the idea, to design an awareness and fundraising campaign around the dream of her son just being alive. For more information, including photos, see also The Story Behind Project Alive.
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Get the official screenshots and logos for press and promotional purposes
Media & Downloads
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