Tuesday, May 30, 2017
My name is Elizabeth SantaCruz. If you aren't aware, Lupus is an autoimmune chronic illness that can affect any part of the body including skin, joints, and internal organs. In February 2016, my 9-year-old daughter, Miah, was diagnosed with Lupus after two years of visiting several doctors who were unable to determine what was wrong.
Elizabeth and her daughter with Mayor Alberto Santos of Kearny, NJ.
Currently, there is no known cure for Lupus, however that hasn’t stopped my family and me from always seeking more information regarding this illness. As a mother, I began working with the Multi-Cultural Outreach Task Force shortly after my daughter’s diagnosis. The program was created by the Lupus Research Alliance to help raise awareness among multi-cultural groups. In October 2016, I also became the co-host of #LupusChat, an online discussion series that take places on Twitter and aims to connect those living with Lupus to educational resources. On March 2017, I was invited by The Lupus Research Alliance to participate as a Lupus Advocate at the Annual Advocacy Meeting and Hill Day in Washington DC. Lupus Advocates met with Members of Congress and their staff. We shared our personal stories about Lupus and discussed support for Lupus Research.
During the current school year, I have organized two Lupus Awareness Assemblies in Franklin School. On the first Assembly, a popular and energetic band named Wyland participated. The students enjoyed a mini-concert by this band. For the second Assembly, the Red Bulls Street Team combined street style with the gracefulness of soccer. It is important for me that the students learn about Lupus at an early age in a fun and friendly way.
My request for Cut and Tie a Ribbon to Spread Lupus Awareness was approved by Mayor Alberto Santos of Kearny, NJ and the council. This event took place at the Kearny Town-Hall on May 6th at 9:00 am. This was a very special event because it marked the commencement of Lupus Awareness month.
Brenda Blackmon is a multi-Emmy award winning reporter who, in 2008, created "The Kelly Fund for Lupus, Inc.” after her daughter Kelly was diagnosed with Lupus. She is the author of "Another Mom's Story" which will be available in May this year. My daughter, Miah’s, story will be part of this book. She has been working very close with Franklin School and other entities, to create a bilingual Lupus Awareness Book “Awareness - Conciencia”
I hope one day there will be a cure for Lupus, but for now my duty is to spread Lupus awareness. I have met with several Lupus advocates, and their stories are inspiring. It gives me hope for my daughter, and made me realize that I could make a difference. You can read more about Elizabeth and Miah here.