The Advisory Committee on Heritable Disorders in Newborns and Children Recommends Adrenoleukodystrophy (X-ALD) for RUSP The Adrenoleukodystrophy (ALD) patient and physician community has advocated for years to have ALD added to the Recommended Uniform Screening Panel (RUSP). RUSP is the list of diseases that the federal government through the Secretary of Health and Human Services recommends …
Legislation requiring the Illinois Department of Public Health to provide all newborns with screening tests for the presence of adrenoleukodystrophy (ALD) under a new law sponsored by Illinois State Senator Dale Righter (R-Mattoon) was signed August 19th by Governor Bruce Rauner. “Screening for ALD at such an early stage will help save lives,” Righter said. “All …
The United Leukodystrophy Foundation is soliciting grant applications to support research in the leukodystrophies. Applications involving any of the leukodystrophies with budgets up to $30,000 (plus up to 10% indirect costs) will be accepted through November 1. The Medical and Scientific Advisory Board will review applications for scientific merit, feasibility, and likelihood to advance the field. …
Congratulations to Dr. Reuben Matalon with the University of Texas Medical Branch for having been honored with the 2016 ULF Service Award, which was presented to him at the ULF Conference on July 28th. The inscription reads: “The United Leukodystrophy Foundation honors Dr. Reuben Matalon for more than 30 years of service to the ULF …
The UnitedHealthcare Children’s Foundation is seeking grant applications from families in need of financial assistance for their child’s health care treatments, services or equipment not covered, or not fully covered, by their commercial health insurance plan. Qualifying families can receive up to $5,000 per grant with a lifetime maximum of $10,000 per child. Children must …
Congratulations to Dr. Ian Duncan of the University of Wisconsin – Madison School of Veterinary Medicine. He is the ULF research grant award recipient of $35,000!
Augusto Odone, who was born March 6, 1933, passed away on October 25, 2013 at the age of 80. A funeral service was held in Acqui Terma, Italy near Genoa on Saturday, October 26. Augusto, an economist for the World Bank, was most known for his involvement with the creation of Lorenzo’s Oil, which was …
