Supports the advancement of preclinical studies and gene therapy program development
Nov. 29, 2022
Milwaukee, WI: The Bridger & Essex Grebe Fund today announced a two hundred thousand dollar grant to the INADcure Foundation to support their efforts in further developing the INADcure INAD/PLAN gene therapy program and paving a path forward to take it from preclinical studies to a future clinical trial.
Bridger Stowe & Essex Hart Grebe were each born with INAD, a progressive genetic disorder that mainly affects the nervous system and muscles, worsening over time. Children who suffer from INAD are healthy at birth but begin developing symptoms of the condition by age two. They will exhibit developmental delays and eventually lose skills they previously had, including most voluntary movement and vision. INAD is challenging to diagnose, and there is currently no treatment or cure—only therapies to improve the child’s quality of life.
Despite their condition, Bridger and Essex inspired their family, friends, and others with their courage and resiliency. They loved those around them, and their smiles provided genuine warmth. It took seven years before Bridger had a diagnosis for his symptoms. He passed away from complications related to INAD in 2010, and Essex passed away five years later. The annual Bridger & Essex Grebe Softball Challenge, which raises funds for the Bridger & Essex Grebe Fund, was developed and inspired by family friends as a way to help other families while remembering Bridger and Essex and celebrating their lives.
“We are very grateful for the generosity of family, friends, colleagues, and even people we have never met for enabling us to make our most significant contribution to INADcure to date to help advance their gene therapy initiative toward clinical trials,” says Kelly Grebe. “Anything that we can do to find a cure, to prevent families from having to do this, or help families that are going through it – that’s our goal.”
The INADcure Foundation was formed in 2017 to support the development of treatments for INAD and other forms of PLA2G6-related neurodegeneration (PLAN). Gene therapy has been identified as a promising treatment option for INAD/PLAN. As such, the Foundation is progressing through preclinical studies, which will determine if the treatment can be tried safely in humans and will lay the groundwork for a clinical trial. This milestone is a significant move for INADcure on its mission to support the development of treatments, including a cure, for INAD and other forms of PLAN.
“This grant is an incredible testament to the very crucial work the foundation is conducting as we aggressively work towards finding safe and effective treatments for this devastating condition. We will be eternally grateful for the support of Kelly & Michael Grebe, their family, and their community,” says Leena Panwala, Founder & Executive Director at INADcure. “This past summer, our team of experts provided us with a 24-month plan to transition our INAD/PLAN gene therapy initiative from preclinical studies to a clinical trial. The harsh reality, however, is that, as with most rare diseases, funding research to find a cure falls to families. Wealthy donors usually focus their funding on broad issues, and pharmaceutical and biotech companies don’t see a money-making opportunity. This is a costly endeavor, and we’re working to raise $7 million to fund the remaining preclinical studies and the trial itself. The first two million is needed by March – so the need for funding is truly urgent!”
To learn more about the INADcure Foundation’s gene therapy initiative and how you can provide support, visit http://onegeneonedream.org/.
About the Bridger and Essex Grebe Fund
The Bridger & Essex Grebe Fund was established to honor the lives of Bridger Stowe & Essex Hart Grebe by providing support, both to families with children who have complicated medical needs, but who do not have the good fortune to be able to afford life-changing therapy, assistance, and special equipment, as well as to support research directed at finding a cure for Infantile Neuroaxonal Dystrophy (INAD). The fund is supported through the Greater Milwaukee Foundation. Since its inception twelve years ago, the Fund has raised over $600,000.
For more information, please visit https://bridgerandessexgrebefund.com
About the INADcure Foundation
The INADcure Foundation is a 501(c)(3) nonprofit charity whose mission is to support the development of treatments, including a cure, for Infantile Neuroaxonal Dystrophy (INAD) and other forms of PLA2G6-related neurodegeneration (PLAN). Its work includes advancing our understanding of this devastating disease, educating the public about INAD and other forms of PLA2G6-related neurodegeneration, advocating for better access to treatment, and supporting the families and caregivers of children diagnosed with INAD worldwide.
For more information, please visit www.INADcure.org.