President of Lupus Foundation of Mid and Northern New York, Inc., LRI Patient Coalition Advocate
In May of 2001 I had just struggled through a two-year major exacerbation of my lupus when the inaugural issue of The Lupus Research Institute's newsletter arrived in my mailbox.
I was quite moved by the passion and commitment its pages conveyed especially in reading of the board chairs and their daughters' battles with lupus. It brought to mind my parents and their constant dedication and support, as well as the tears they have shed for me during my lupus journey. I thought of the numerous times treatments had failed me over the years and how my physicians and I were forced to take a step backwards and think outside of the box to treat my complicated medical picture. The LRI's novel research concept made sense to me and I felt compelled to reach out and share my heartfelt gratitude as a patient to them for giving us hope for brighter days and the promise of a better tomorrow.
I am proud to say that The Institute welcomed me and my lupus family with open arms and we became part of this winning team, connected by the lupus cause. The LRI is a collaboration of lupus patients, their families, physicians, researchers, academia, and patient advocacy organizations. I am President of the Lupus Foundation of Mid and Northern New York, Inc., an active member of the LRI's Patient Coalition of advocacy groups around the country.
The LRI has made tremendous strides in the lupus research community with many of their initial grants receiving NIH funding, and we are extremely proud of our collaboration with the LRI, it has become our beacon of hope, brightly shining in the stormy seas of lupus. It is fueled by the passion of its supporters; especially patients and their loved ones.
As a patient I want to extend my gratitude to all of the advocates lending their passionate voices to our lupus chorus echoing loudly on Capitol Hill each year. It is not easy to travel here and bear your soul to strangers. Being an advocate can fill a void left by disease; for me it has brought my life full circle, repeatedly bringing me back inside the beltway to influence public policy in an attempt to make a positive difference in the lives of others.
Most of us living with lupus cling to the belief that there will be a cure during our lifetime. Until researchers can understand lupus and identify the cause this cannot happen. I passionately implore you to increase all lupus research funding from bench to bedside and translational research that will enable scientists to find the cause, develop biomarkers and clinical trial methodologies that will lead to precise diagnostic measures and the discovery of safer, more effective treatments, and ultimately eradicate this predator.
Turn your emotion into motion by using the automatic tool here on the LRI website to contact your legislators and urge them to support the three key issues listed below. Please make your voices' heard and join our wonderful group of lupus warriors!
Improve Lupus Diagnosis - Educate Healthcare Professionals
Join the Congressional Lupus Caucus
Lupus ends with Us.