Nephrotic Syndrome Awareness Day in New York State April 2, 2018 by Lauren Eva 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. (L-R) Jackie Botta, Francesca Botta, and Aidan Mascarelli 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. (L-R) Francesca Botta, Anthony Botta, Mausam Mascarelli, Jackie Botta, Marley Botta, Aidan Mascarelli, Senator John Brooks (D-8th Senate District), and Assemblyman Edward P. Ra
Anivette Morejon says February 17, 2019 at 8:41 am Thank you for raising awareness on such an important disease. My little year old daughter, Laylani, was diagnosed a year and a half ago. Since then, she has relapsed twice. We are currently in miami childrens hospital due to complications. She is missing her sisters, school, friends, family and your normal day to day routine tremendously. This diseases is not so common and its remarkable that the general population is becoming aware of it. This way, children affected have more resources and so do their family members that feel so helpless. Florida needs to also start campaigning for awareness and I will do my best to get others aware and moving for nephrotic syndrome and cures.