One of my passions has always been to help our community here at Rebalance, whether it is to raise awareness on various musculoskeletal dysfunctions or other important conditions. One of Rebalance’s very own members and her daughter are pioneering the battle against Cystic Fibrosis and would like to share all their incredible work they have been doing. If you have family or friends with this condition then I encourage you to visit and read more.
Emily’s Entourage
The mission of Emily’s Entourage is to Accelerate CF research to save lives through the power of community. Emily’s Entourage is a 501(c)(3) that has raised nearly a million dollars to help cure Cystic Fibrosis. Recent breakthroughs are changing the face of CF, but unfortunately they do not benefit many of the rare (nonsense) CF mutations, including Emily’s. We’re mobilizing friends, families and communities to join Emily’s Entourage on our quest to accelerate research for new treatments and a cure for CF.
On January 21, Emily’s Entourage is partnering with University of Pennsylvania’s Orphan Disease Center to host an international symposium— bringing together researchers, clinicians and biotech/pharma focusing on rare CF mutations. We have glimmers of hope of truly making a difference for the rare CF mutations.
Below are a few links that you might be interested in seeing.
A TED X talk by my kids on social media, youth activism and Emily’s Entourage
Campaign Video:
Journal of General Internal Medicine on EE and participatory research
