2020 Judi Masters award goes to Ed Kammerer
On January 28th 2020, RMRA held its Annual Judi Masters Award Recognition Event at Old Major in Denver. RMRA board members, R4R committee members, donors, friends, family, as well as journalists like Corey Rose from 9News were in attendance to honor Ed Kammerer, a CDKL5 dad, for his time and dedication to Risers 4 Rett for nine years.
Ed, a dedicated fly-fisherman, lives in the Denver metro area with his wife, Yvette, and their twin daughters Barrett and Brennan. In 2008, their lives changed forever. After three years of unanswered questions and countless tests, his daughter Barrett was diagnosed with a very rare atypical form of Rett Syndrome called CDKL5 with intractable epilepsy.
Since the summer of 2009, Ed has been heavily involved with Casting 4 A Cure, another fundraising effort for Rett research and support. This event allowed Ed to do something he loves, while helping his daughter and other girls like her by raising money for Rett Syndrome Research.
In 2011, Children’s Hospital Colorado had opened their first Rett Clinic, which his Barrett daughter was able to be a part of. Ed was anxious to become a part of Risers4Rett (R4R) to help fund the Rett Clinic and help support all the Rett families in the Rocky Mountain region and has been a driving force on the R4R committee since then.
At the event, Dr. Tim Benke, Clinic Director at the Rett Clinic at Children’s Hospital Colorado gave an overview of the current state of trials for Rett Syndrome and emphasized the importance of supporting the Rett Clinic, which is funded by RMRA.
“We are hopeful that in the next year or so there might be trials that are gene therapy trials with the potential to be disease removing, modifying or even reversing. We couldn’t do this without a Rett Clinic, we couldn’t do this without your support.”
Four years ago, RMRA established the Judi Masters Award to honor people that are dedicated to promoting awareness of Rett Syndrome. The namesake, Judi Masters, was the grandmother of a Colorado Rett girl, which worked tirelessly to spread awareness about this rare disease. Like most of us, she had little idea about Rett Syndrome until her granddaughter, Caitlyn Masters, received her diagnoses. Judi Masters unfortunately passed away in 2013, but we can say for sure that RMRA would not be what it is today without her efforts.
Thank you Ed for all those countless hours you dedicated to Risers4Rett and RMRA. A thank you goes to Justin Bronson, owner of Old Major for donating the space for our special gathering.
