ALD Connect Launches Breakthrough Research Fund to Accelerate Scientific Discovery
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The establishment of the Breakthrough Research Fund marks a defining moment for ALD Connect and the community we serve. It also represents a first for the organization: a public call for philanthropic support to fund research in ALD. ALD Connect invites individuals, families, foundations, and industry partners to invest in the future of ALD science. The goal of this initiative is to raise $5 million to accelerate discovery and drive meaningful progress in ALD research and clinical care.
The launch of this fund is being catalyzed by two families whose generosity reflects the deep dedication of those impacted by ALD:
• We are excited to announce a $1 million pledge from Stuart Smith. This commitment honors his father, who was affected by adrenomyeloneuropathy (AMN), as well as his sister, Julia Gould, and nephew, Rob Thompson. Julia and her husband, Porter, attended the 2024 ALD Connect Annual Meeting and Patient Learning Academy, where they witnessed the resilience and strength of the ALD community. That experience, along with their family's journey, inspired this extraordinary support.
• In addition, we are thrilled to share that the Hall family’s foundation, Will to Cure ALD, will match the first $100,000 in donations to the Breakthrough Research Fund. The Hall family was moved to take action after William was diagnosed with ALD through newborn screening. Joey Hall, William’s grandfather, and Tyler Hall, William’s father, attended the ALD Connect Collaborative Research Network meeting and saw firsthand the power of collaboration in driving research forward.
The Breakthrough Research Fund builds on recent momentum for ALD Connect, including a prestigious grant from the Chan Zuckerberg Initiative’s Rare As One Project. This support has strengthened collaborative infrastructure and expanded capacity to accelerate discovery. Together with new philanthropic commitments, it positions ALD Connect to drive bold, high-impact science that will shape the future of ALD research.
Kelly Miettunen, Executive Director of ALD Connect, said, “We are profoundly grateful to these families for their visionary generosity. Their leadership will fast-track promising science with the potential to transform the trajectory of this disease. Every gift moves us closer to answers, better treatments, and brighter futures for families affected by ALD.”
ALD is a rare genetic disorder that causes progressive damage to the brain, spinal cord, and adrenal glands. Boys and men with ALD are at risk for developing cerebral disease that can result in severe disability or death. In adulthood, both men and women often experience serious spinal cord disease that affects mobility, function, and quality of life. While newborn screening has enabled earlier diagnosis, treatment options remain limited. As public research funding faces ongoing uncertainty, private philanthropy is playing a critical role in advancing care and discovery.
“We are pioneering a new path forward toward scientific advances that will change lives,” said Timothy Maguire, ALD Connect Board Member. “We are proud to launch the Breakthrough Research Fund and look forward to partnering with additional stakeholders on these meaningful efforts. Please help us make a difference!”
The ALD Connect Breakthrough Research Fund will support innovative, high-impact research projects in priority areas such as biomarker discovery, gene therapy, and novel treatment strategies. With a mission to fast-track bold science, the fund will serve as a powerful engine for progress in the ALD field.
To donate, visit: www.aldconnect.org/donate
Learn more: https://aldconnect.org/clinical-trials-and-research/breakthrough-research-fund/
Kelly Miettunen
ALD Connect
kelly.miettunen@aldconnect.org
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