Governor Cuomo Proclaims March 27th, 2018 as Nephrotic Syndrome Awareness Day in New York State
Governor Andrew M. Cuomo has proclaimed March 27, 2018 as Nephrotic Syndrome Awareness Day in New York State. NephCure is excited to partner with Assemblyman Edward P. Ra of the 19th district for this momentous occasion. Read the full resolution here.
NephCure volunteer Marlene Botta met Assemblyman Ra at the 2017 Long Island, New York NephCure Walk. Together, they formed a plan for New York to recognize the seriousness of Nephrotic Syndrome and the progress that NephCure Kidney International has made towards finding better treatments and a cure for this chronic kidney disease.
Marlene, mom to Jackie, 16, says, “The most exciting thing about going to Albany is the awareness. My main goal is to be able to say ‘Nephrotic Syndrome’ and have someone know it, like they know other diseases. They may not know it as intimately as we do, but they don’t have to say, ‘Nephrotic what?’
Marlene adds, “NephCure has been a Godsend! It has given Jackie a sense of not being alone in this, but with a network of other families that we can garner advice and support from. Jackie has been active with girls her age she met through NephCure on social media. They raise awareness and tell their stories. Jackie gave me the reason to fight the illness and NephCure gave me the platform. Helping NephCure raise awareness makes me feel less helpless.”
NephCure is thrilled to share this opportunity and what it means for families living with the effects of Nephrotic Syndrome. A heartfelt thank you to our volunteers in New York who made this day possible.