Rep. Miller Backs House Resolution to Increase Public Awareness of Rare Diseases

Thank you U.S. Representative Candice Miller for your support in cosponsoring a House resolution designating February 28th as National Rare Disease Day!! "Through initiatives like the WAGR Warrior Foundation, these advocated are helping to increase the level of public awareness needed to improve diagnoses and treatments." ... "Increasing public awareness of rare diseases and advocating for those who cannot advocate for themselves will help us improve treatments and the support networks that families coping with rare diseases rely on every day." Beautifully said, Ms. Miller.  Thank you...

What is WAGR Syndrome?

WAGR syndrome is an extremely rare genetic condition that can affect both boys and girls.  It is the direct result of (typically) non-inherited deletions of genetic material around chromosome 11p13.  There are less than a few hundred cases of WAGR syndrome reported in worldwide medical literature. Babies born with WAGR syndrome often have eye problems, are at high risk for developing certain types of cancer, and are at a high risk for various developmental delays. The term "WAGR" stands for the first letters of the most common features associated with the condition: (W)ilms' Tumor: the ...

Emma’s Story (a mother’s perspective)

Emma was born in March of 2013 and we had a very happy month adjusting to life with our new baby (aside from the sleepless nights, diaper rash and a pretty bad case of colic…) In April of 2013, we took her in for her 1 month well child appointment and experienced an unexpected shift in how we had pictured our family’s future. It began with our pediatrician suggesting we pop in to the ophthalmologist’s office later that day because “Emma’s pupils were not reacting to light as she would have expected. It’s probably nothing, but better safe than sorry.” Which now brings us to the beginning of ...