Follow on Google News
News By Tag
News By Place
Follow on Google News
INAD Warriors Inc., Raises $70,000 at Blue Tie Gala To Support INAD Research
The event kicked off the recently formed nonprofit's schedule for an annual Gala and other grassroots fundraising events this year and ongoing.
The live and silent auction items included a five night stay on the beautiful island of St. Kitts, a weeklong vacation at Harbourside, Indian Rocks Beach, FL, a one night stay Polar Express Package in St. Louis, MO, various dining, spa and entertainment packages among various other products and services donated by local businesses.
Guest speakers included Dr. Erin Conboy of IUSM who shared information on the diagnostic journey of rare pediatric diseases, Heather Prentice President of INAD Warriors gave updates on the current research landscape, Carolyn Banik of NBIA Disorders Association provided the point of view of a parent of a child with a rare life shortening genetic disorder. And Paige Kays, Warner Kays' mother, shared the moving story of her son and family's courageous journey with INAD.
Proceeds from this event are being combined with an additional $30,000 raised by families through NBIA Disorders Association and will be used to issue a $100,000 grant toward future research in INAD.
"We were overwhelmed by the outpouring of support from our community and local businesses. We will use the momentum to help us accomplish our goal of raising at least $100,000 annually to reach our goals of raising awareness of this terrible rare disease, help families burdened by it, and help researchers one day find a treatment or cure." said Heather Prentice, President.
"We extend our heartfelt gratitude to INAD Warriors, Inc. for orchestrating the remarkable Blue Ties and Diamonds Gala. This partnership holds great promise, and we're committed to working hand in hand in the years to come, as we collectively strive to bring us closer to our mission of treating and ultimately finding a cure for NBIA disorders. We are equally thankful to the Gala attendees for their remarkable support. Your generosity inspires us, reinforcing our belief that together, we can make a significant difference in the lives of those affected by NBIA disorders. Thank you for standing with us on this important journey." - Amber Denton, President of NBIA Disorders Association
ABOUT INAD WARRIORS, INC.
INAD Warriors, Inc. is a nonprofit inspired by Warner Kays' courageous journey. The INAD Warriors, Inc. mission is to raise awareness in the global community about infantile neuroaxonal dystrophy (INAD) and the related PLA2G6 gene disorders. Through grassroots fundraising we are empowering the research community to find the first approved treatments to slow progression and potentially one day cure this ultra rare disease.
Infantile Neuroaxonal Dystrophy (INAD) is an ultra-rare (<200 worldwide) inherited neurodegenerative disorder. It destroys axons, the part of the neuron (nerve cell) that carries messages from the brain to other parts of the body through build up of fatty substances (lipids) on the nerves. In the beginning a child with INAD will appear to be developing normally. But around the ages of 6 months to 3 years developmental milestones will begin to slow down and regress. Some of the first signs and symptoms may be changes in a child's vision, loss of motor skills, and developmental regression..
ABOUT NBIA DISORDERS ASSOCIATION
Established in 1996, the NBIA Disorders Association provides vital support to NBIA families, educates the public, and collaborates with researchers worldwide. As leaders in family support, they maintain an informative website and host biennial International Family Conferences, fostering connections and promoting knowledge-sharing within the community. To date, NBIA Disorders Association has contributed nearly $3 million in research grants worldwide, dedicated to finding treatments and cures for all NBIA disorders.
Secretary, INAD Warriors, Inc.