Rare Disease Report

#WhenIGrowUp - with Jared Leto

JULY 10, 2015
Melissa Hogan
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


Stay informed on the latest rare disease news and developments by signing up for our newsletter.
Copyright © RareDR 2013-2018 Rare Disease Communications. All Rights Reserved.