Testimony of Billy Tauzin I A Tribute to Dr. Merv Trail I Leadership and Membership I Coup de Main

Testimony of Congressman Tauzin
House Appropriations Subcommittee on Labor, Health and Human Services
March 27, 2001

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Congressman Billy Tauzin (R-Thibodaux) testifies in Washington, DC before the House Appropriations Subcommittee on Labor, Health and Human Services, Education and Related Agencies regarding the importance of continued federal funding for the Center for Acadian Genetics and Hereditary Health Care. On the left is Keith Andrus who is afflicted with Friedreich's ataxia, one of the genetic disorders that occurs at a disproportionately higher frequency in the south Louisiana Acadian community.

Congressman Ralph Regula is the Chairman of the House Appropriations Subcommittee on Labor, Health and Human Services, Education and Related Agencies. He and subcommittee staff assistant, Ms. Francine Salvador, are pictured while receiving the testimony of Congressman Tauzin.

Congressman Tauzin is shown with Ron Bartek, stepfather of Keith Andrus and President of the Friedreich's Ataxia Research Alliance, Keith Andrus, and Raychel Bartek, mother of Keith Andrus and long-time aide to Congressman Tauzin.

Dr. Merv Trail (third from left) at the "Genetics of the Acadian People" symposium at McNeese State University in August, 1999. He is pictured with Dr. Charles Scriver, keynote speaker; Dr. Bronya Keats, director of the Center for Acadiana Genetics and Hereditary Health Care, and Dr. Robert Hebert, president of McNeese State University.

It Takes a Leader: A Tribute to Dr. Merv Trail

By Judy LaBorde

It is no small task to keep the many pieces of the LSU Health Sciences Center running smoothly while at the same time articulating a vision of medicine for the future. Nobody did it better than Dr. Merv Trail, Chancellor from 1994 until his death on January 3, 2001.

From the moment he was contacted by Congressman Billy Tauzin in 1998 about addressing the unmet genetic health needs of the people of Acadiana, Dr. Trail dedicated his boundless energy to that goal. His commitment never wavered. If anything, his enthusiasm grew. He cultivated the support of Governor Mike Foster. He flew to Washington and met with Tauzin. He made the calls. He took the time. He did whatever it took to get the Center for Acadiana Genetics off the ground. He knew that the mission of the new Center was a perfect expression of the mission of LSU Health Sciences Center.

And, when the Center sponsored its first major project, a public symposium entitled “Genetics of the Acadian People” at McNeese State University in Lake Charles in 1999, Dr. Trail was there. He was there at the reception for the presenters and community leaders, shaking hands, explaining why the work of the center is so important. He was there at the lectern the next day welcoming the audience of 600 and telling the story. His presence meant so much. Throughout the year and as the years went by, Dr. Trail never tired of telling the story and expressing his enthusiasm. As a result, the Center has been awarded federal funding every year since 1999. Leadership was the key.

Nobody did it better than Dr. Merv Trail.

Leadership & Membership

Back row, L to R: Jess Toene, MD, John Doucet, PhD, Charles Meyer, MSW, Brian Jakes and Alan Robson, MD

Front row, L to R: Judy LaBorde, Bronya Keats, PhD

Coup de Main

Coup de Main Means Lending A Hand in Acadiana

by Judy LaBorde

To most Americans, the words "coup de main" look foreign and indeed they are. The term is French and means "helping hand." It is used to describe a cherished tradition in French communities, especially in rural areas. When a family needed help because of illness or other reasons, families in the community would gather and help their neighbors in need. This coming together to help the family is the inspiration for the Center for Acadiana Genetics and Hereditary Health Care at LSU Health Sciences Center. The Center has been in existence since 1999 because of major funding from the Congress. The Louisiana Congressional delegation has unanimously supported the work of the Center to reach the medically under served populations of Louisiana.

"Welcome to Marksville," situated in the center of the State of Louisiana, along the northern boundary of official Acadiana. The town is known for its cochon de lait (homegrown pigs cooked over open pits in a spread eagle fashion), bourre (card game played on front porches up and down the bayou), and coup de main, the time-honored tradition in French communities in which neighbors comes together to help a family in need.

It is in this spirit of “neighbors helping neighbors” that the Center for Acadiana Genetics at LSU Health Sciences Center joined forces with the National Ataxia Foundation/Louisiana Chapter and the Avoyelles Hospital to do an all-day screening for ataxia.

The mission of the Center is to implement and expand clinical and educational services in genetics throughout Acadiana. In fulfillment of that mission, the Center co-sponsored an all-day screening for ataxia in the town of Marksville, Louisiana, on June 23, 2001. The two other sponsors were the National Ataxia Foundation/Louisiana Chapter and Avoyelles Hospital which is located in Marksville, the parish seat of Avoyelles.

Our host, Avoyelles Hospital, made available the complete facilities of their medical office building.

Forty-three people and their families came to the day-long event held at the Avoyelles Hospital Medical Building. Each person was given the chance to see the nine-member medical team consisting of neurologists, geneticists, physical therapists, an occupational therapist, a speech therapist, social workers, a wheelchair specialist, and a representative from Families Helping Families, a parent advocacy group. To assure that patients remain on site, a light lunch and beverages were provided.

Manning the front desk was a busy, all day job for (from left) Roxanne Foto, clinic coordinator, Mata Drake, April Winn and Dot Charlet. About 43 patients had the opportunity for multiple appointments with the nine-member medical team.

In addition to the office and rehab facilities, the hospital provided staff services to coordinate and publicize the event, along with a rehab team.

"We've done these community clinics for 16 years," said Denise Drake, president of the National Ataxia Foundation/Louisiana Chapter, "and this was our most successful effort. The setting was excellent, thanks to the folks at Avoyelles Hospital. We had tremendous community support which helped us get the word out and that resulted in a good turnout. Along with the 24 dedicated volunteers we brought in, it was teamwork at its best."

Sherrie Snow, marketing coordinator with Avoyelles Hospital, was a big help in making things go smoothly; Denise Drake, president of the National Ataxia Foundation/Louisiana Chapter, is an old pro at these kinds of events, while Regan Challinor, genetic counselor with Woman’s Hospital in Baton Rouge, was a first-timer.

The medical director for the clinic was Dr. Michael Wilensky, a private practice neurologist in suburban New Orleans. He has served as medical director since the first on-the-road clinic in 1985. "I feel the clinical neurological exam is of the utmost importance to individuals in sorting out these numerous hereditary diseases. We try to coordinate the clinical exam with the geneticists' work and create a relaxed atmosphere conducive to pointing families in the right medical direction, discussing family histories, current health problems, and available services," he said.

Ataxia refers to a family of diseases that causes lack of coordination and balance, speech difficulties and muscle deterioration. It affects about 150,000 Americans and some forms are inherited. The most common inherited form is Friedreich ataxia which has a frequency among Acadian descendants that is 250% higher than the general American population. A child born with Friedreich ataxia is often considered clumsy during childhood; coordination continues to worsen through the years and often the young person has to use a wheelchair by young adulthood. At present there is no cure for Friedreich ataxia but there is a lot of promising research in the field of genetics.

Dr. Bronya Keats, Director of the Center for Acadiana Genetics and Hereditary Health Care at LSU Health Sciences Center, counsels the Kenney/Dugan family of Jena, Louisiana, about the hereditary ataxias. From left are Dr. Keats, Mrs. C.D, Kenney, Dena Dugan, C.D. Kenney (Dena’s father) and Johnny Dugan (Dena’s son).

In Louisiana, this research is led by Dr. Bronya J.B. Keats, director of the Center for Acadiana Genetics at LSU Health Sciences Center in New Orleans. "Just in the last five years, our knowledge of ataxia has increased dramatically," she said. "There is great hope for the future but of course we also must take care of the present, doing whatever we can to help families who have the disease. That's why these weekend community clinics are so good."

Dr. John Doucet gave a talk in the afternoon explaining the migration of the Acadian French from France to Canada and Louisiana. “The people are so appreciative,” John said, “which is why I enjoy doing this work.”

One aspect of the clinic that was particularly well received was a talk by Dr. John Doucet of Nicholls State University in Thibodaux who is also part of the Center for Acadiana Genetics. He gave an overview of genetics and of the genes that cause different forms of ataxia. He explained how genes are passed from one generation to the next and how certain populations come to have more of a certain disease than another. "There is a real need for genetics education in Acadiana and it's very gratifying to fill that need," said Dr. Doucet. "The people are so appreciative."

Volunteer physical therapist Jean Dutro spent much of the day on her knees helping out children and their parents.

Dr. F.P. Bordelon (retired) of Marksville gave us positive feedback on the coup de main. He is pictured with Denise Drake as activity was winding down.