Jump to one of these sections on this page:
› Congress Doubled the NIH Budget
› Center for Acadiana Genetics Established
› FARA Testimony Before US Congress
› Human Genome Project
› Other Resources

Congress Doubled the NIH Budget
In a landmark congressional initiative, the U.S. Congress, over the five-year period from 1998 to 2003, doubled funding for medical research through the National Institutes of Health (NIH). During that period, appropriations for NIH rose about 15% each year, resulting in a FY 2003 NIH budget of about $27 billion. Since that time, annual increases have been much smaller and the FY 2005 budget was about $28 billion.

jump to top

Center for Acadiana Genetics Established

"This is a unique opportunity to study the French Acadian (Cajun) population where Friedreich's ataxia occurs at a rate 2.5 times higher than the national average."
— Dr. Bronya Keats, Center Director

Spearheaded by then US Congressman Billy Tauzin (R- LA) and the Louisiana State University Health Sciences Center, the Center for Acadiana Genetics and Hereditary Health Care was established in New Orleans. The US Congress has appropriated about $4 million for the Center, which links a school of medicine, a biomedical research center, hospitals, rural clinics, and a strong telecommunications network to provide urgently needed health services and education regarding genetic diseases. It also conducts vital research into hereditary neurodegenerative disorders like Friedreich's Ataxia.

jump to top

FARA Testimony Before US Congress
FARA President Ronald J. Bartek testified before the US House Appropriations Subcommittee on Labor, Health and Human Services, Education and Related Agencies regarding Fiscal Year 2001 funding for the National Institutes of Health.

Representing FRDA patients, their families, and the scientific community, Mr. Bartek stated that FARA supports Congressional efforts to double the NIH budget. Additionally, he said FARA opposes congressional earmarking of medical research funds for particular diseases. Scientific judgments ought to be left to researchers who are qualified to identify areas of potential opportunity and discovery. Mr. Bartek stated "None of us should want to pit one disease against another, this week's 'disease of the week' against next week's. None of us should seek a system in which our nation's precious medical research resources are decided on the basis of squeaky-wheel, loudest-shout political pressure." FARA subscribes to the old mariners' adage, "A rising tide lifts all ships."

› Read His Testimony
› Scroll down for related information in the Other Resources section.

jump to top

Human Genome Project
The international Human Genome Project and Celera Genomics Corp. together completed an initial sequencing of the human genome — the genetic blueprint for human beings.

The sequencing promises to lead to a new era of molecular medicine that will bring new ways to prevent, diagnose, treat, and cure disease. Alterations in our genes are responsible for an estimated 5,000 clearly hereditary diseases, including FRDA.

The full decoding of the genome will help scientists decipher and understand the specific function of the genes. Scientists will be able to use the working draft of the human genome to develop treatments for FRDA at the molecular level.

New avenues of hope are emerging. Drug design guided by an understanding of how genes work and knowledge of exactly what happens at the molecular level to cause disease, will lead to more effective therapies. Rather than trying to replace a gene, it may be more effective and simpler to replace a defective gene's protein product or cause the gene to produce more protein. The initial sequencing represents the starting point for a new era of genetic medicine.

jump to top

Other Resources
Congressional Testimony of Former NIH Director, Dr. Harold Varmus

Windows on Washington (www.ataxia.org) — A useful resource provided by the National Ataxia Foundation.