Ragbrai 2018 & helping fund a cure

It’s that time of the year again- Ragbrai 2018!  And Team Jack is geared up for another ride across Iowa.  We have grown again, 14 riders this year!  And the route has many familiar stops.  In fact this year it ends in Jamie’s hometown area, the Quad Cities.   

ragbria map

This years Ragbrai 2018 fundraising efforts will be going towards supporting the Fowlers dear friend Joey Howell who directed and produced a 6 year span documentary about living with rare disease.  The film features the Fowler family, the Purcell family from Vancouver and others living with Hunter Syndrome.  This incredible story documents the journey that so many other people live clueless too.  This film is beautifully done and spotlights the truths of rare disease.  It’s an incredible way to raise awareness and enlighten those around rare disease.  The film is due to be released August 9th in Denver, Colorado at the Mayan Theatre. Later it will be released in Chicago and Vancouver and Toronto.  It also is being submitted to various film festivals.  then other cities 

For Joey Howell, telling these stories about Hunter Syndrome is a deeply personal mission. Two members of his family, Tyson Cowan and Jordan Barthel, have been diagnosed with MPS II: Tyson died in 2007 at the age of 21, and Jordan, 33, lives in Arizona with his mom and stepdad. The film began in the fall of 2011 when Joey traveled to Vancouver, BC to film a fundraising gala to benefit Hunter Syndrome research that Deb Purcell was hosting. He continued to follow the Purcell family for the next 6 years. Deb introduced Joey to Jamie in 2012 and the Fowlers agreed to let him to follow their story starting in the summer of that year.   

To spread awareness about rare disease, and to help find a cure please consider a donation to launch the documentary. All donations will go towards the launch party – Mayan Theatre expense, advertisement and staff fees.  The rest of the donations will go towards Project Alive – Project Alive This is Jack!.  After 5 years of fundraising this is our final push for a human trial for gene therapy, which we believe is a cure for Hunter Syndrome. If you can, be a part of the cure!  

Much love,

The Hunter Syndrome Community & Team Jack Ragbrai 2018

Donate Here

 

Joey with his cousins.                                       Joey and wife Shonna.

 

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