ELEANOR GEHRIG WAS CHAMPION FOR MDA

Some 80 years ago, a muscular kid from a working class neighborhood in New York dove into the choppy waters of the Hudson River and swam all the way across to New Jersey. As a reward, the foolhardy youngster got his ears boxed by his father. The kid was Lou Gehrig.

Today, just a few streets away at Columbia Presbyterian Medical Center, Gehrig's name and that of his wife are enshrined at The Eleanor and Lou Gehrig MDA/ALS Center, one of 11 MDA centers dedicated to ALS research and care.

Everyone knows that Lou, the great "Iron Horse" of baseball, had ALS. But why was his wife's name placed in honor above his? The answer is part of MDA history.

After Gehrig learned he had ALS and retired from the New York Yankees in 1939, ending his record streak of 2,130 consecutive games played, Eleanor was his chauffeur, nurse, nutritionist and constant companion. She exercised with him, steadied his fingers when he signed his name, and helped him take his daily injections of vitamin E.

So high was the Gehrigs' faith in vitamin E that Eleanor used to prepare a special salad for Lou made with common garden grass that she cut from the park because she was told it was rich with the vitamin. Even with salad dressing, the concoction made Gehrig gag. It didn't stop the progression, and in 1941, Lou Gehrig lost his life to ALS.

"After what happened to Lou, I was heartsick and wanted somehow to strike back," Eleanor said years later. "I felt that Lou would have wanted me to help others. But I realized that medical science hadn't really made a start in studying disorders of the neuromuscular system. Medical men generally deemed such diseases incurable."

In 1950, Eleanor heard that a new organization called the Muscular Dystrophy Association was being formed to combat neuromuscular diseases. "I saw that here was the answer to my personal need -- people whose thirst for action was as deep as my own. I immediately offered my services."

With Eleanor's help, MDA was to become and remain the world's leading private research organization and service provider for those with ALS.

Eleanor served as MDA's national campaign chairman during crucial formative years in the 50s and 60s. Robert Ross, now MDA's senior vice president and executive director, accompanied her as she traveled the country giving speeches and interviews, and telling people like first lady Mamie Eisenhower about the agency's mission.

Eleanor assisted in chapter development, recruited volunteers including many celebrities, and persuaded radio and television program sponsors to give free publicity to MDA's annual fund-raising campaign. She was an MDA corporate member from 1955 through 1964.

In her later years, Eleanor had many friends, including the late wife of MDA Scientific Advisory Committee Chairman Dr. R. Rodney Howell, Sarah E. Howell. Sarah, a doctor herself, had an abiding connection to the Gehrigs. Her father, Dr. Caldwell Esselstyn, had been Lou's personal physician during his years fighting ALS.

Sarah, only weeks before her death in 1993, placed the inscription shown below in a copy she gave to MDA's Ross of a Lou Gehrig biography co-authored by Mrs. Gehrig. The insertion describes Sarah's vivid childhood memory of seeing the Iron Horse in the flesh:

[Ed. Note: Original was handwritten.]

From: Sarah Esselstyn Howell, M.D., Miami, Florida Date: October 29, 1993

To: Bob Ross

Since the Muscular Dystrophy Association is the leading sponsor of research and services in ALS, I wanted you to have this book about Lou Gehrig for your beautiful new library in Tucson. You will note that the book is dedicated to my father.

My dad was Lou Gehrig's personal physician from the time shortly after his diagnosis until his death. Dad, a New York surgeon, was an accomplished athlete and had been asked to care for Lou Gehrig because of this special bond.

Dad went to see Lou every day at his house which was close to ours in Riverdale. I remember vividly going with Dad one day on a house call when I was about eight and seeing Mr. Gehrig wave to me from his window as I waited in the car. Eleanor Gehrig, his widow, remained a close family friend and visitor to our farm in upstate New York until her death.

Eleanor corresponded with families that had lost loved ones to ALS. She often wore a gold bracelet her husband had made for her consisting of mementos from his career, including seven World Series rings.

Eleanor Gehrig died in 1984. But her name will be forever linked with MDA and the quest to defeat ALS.

Return to Top

ONLY SMALL NUMBERS TO GET MYOTROPHIN IN EARLY ACCESS

The pharmaceutical company Cephalon (West Chester, Pa.) says its experimental ALS drug Myotrophin is almost out of the pipeline, but only small numbers of patients will get it, at least at first.

"We're talking hundreds, not thousands," says Kori Beer, a spokeswoman for Cephalon, referring to the expanded access program approved in June by the Food and Drug Administration.

Myotrophin, a nerve growth factor that may help preserve motor neurons, is based on the natural substance IGF-1, or insulin-like growth factor 1. Like insulin, it must be injected.

Expanded access programs are sometimes allowed by the FDA when a drug doesn't meet the criteria for full approval but looks like it might be beneficial in a life-threatening disease and appears reasonably safe.

In June, when the FDA allowed Cephalon to proceed with the access program, some members of the agency's advisory panel questioned the data from at least one of the two Myotrophin clinical trials. (In the European trial, there were more deaths in the treated group than in the untreated one, but the numbers didn't reach statistical significance.)

Cephalon's partner in the Myotrophin venture, Chiron (Emeryville, Calif.), will manufacture the drug.

Officials with both companies say they're proceeding with their application to the FDA for full approval of Myotrophin, have no present plans to conduct another clinical trial, and are following FDA instructions. Beer says the company hasn't yet submitted its application but is working on it.

To register for the early access program to get Myotrophin, ask your doctor to call Cephalon at (800) 896-5855. Beer says about 860 physicians have expressed an interest in giving the drug to their ALS patients. These doctors will soon be receiving detailed information in the mail. The program is being administered by NORD, the National Organization for Rare Disorders. For general information about Myotrophin, Cephalon has another number: (800) 797-0705.

Return to Top

MDA ADDS THREE ALS CENTERS

MDA has opened three new MDA/ALS centers, in Connecticut, Missouri and North Carolina. Each will provide specialized services to people affected by ALS.

These new centers bring to 11 the number of MDA/ALS centers across the country dedicated to ALS research and medical care. Other centers are in Houston; New York; Boston; San Francisco; Chicago; Madison, Wisc.; and two in Los Angeles. The new centers may be reached at:

MDA/ALS Center at Yale University (203) 785-4867 Department of Neurology PO Box 208018 New Haven, CT 06520-8018 Director: Dr. Jonathan Goldstein

MDA/ALS Center at Washington University School of Medicine (314) 362-6981 660 S. Euclid, Box 8111 St. Louis, MO 63110 Director: Dr. Alan Pestronk

MDA/ALS Center at Duke University (919) 684-5422 Duke University Medical Center P.O. Box 3403 Durham, NC 27710 Director: Dr. Janice Massey

Return to Top

TELETHON THROWS SPOTLIGHT ON PEOPLE WITH ALS

Individuals with ALS were well-represented on the Jerry Lewis MDA Labor Day Telethon, broadcast live from Hollywood Sept. 1-2, 1996.

Janis Dorfman, a teacher from Long Island, N.Y., appeared in a special videotaped profile and live for an interview with Telethon Co-Host Mariette Hartley. Dorfman was joined by her husband, son and daughter.

Dorfman, who uses a wheelchair and whose speech is noticeably slowed by ALS, said that help from family and friends has enabled her to "live with ALS, rather than suffer from it." But, she said, more help is needed, and she called upon the Telethon audience to help defeat the disease. "I want to be able to hug again," she said. "I want to be able to teach again."

Texan Barry Goldberg has made numerous appearances on the Telethon since receiving his diagnosis of ALS in 1990. Although the disease has taken Goldberg's ability to walk and now affects his breathing and speech, he maintains a positive, never-give-up attitude. "I keep going, and going, and going," he joked on the 1994 broadcast, likening himself to the Energizer Bunny.

This year, Goldberg was too ill to join his friend Jerry Lewis for the Labor Day show. Instead, he recorded a videotaped message for the program, saying: "MDA has given me, both literally and figuratively, the breath of life."

Another Texas resident who has been a Telethon favorite is college baseball coach James Keller. Keller received his diagnosis of ALS in 1992. Since then, he has often spoken of the hope that MDA-funded research has brought to him, his wife and their two young sons.

The Telethon raised $49,146,555 to support MDA research and services to help people with ALS and other neuromuscular diseases.

Return to Top

ALS SUPPORT GROUPS

MDA support groups provide valuable emotional support as well as practical information to individuals and families dealing with neuromuscular diseases. There are some 200 MDA-sponsored support groups nationwide, with about 50 devoted exclusively to people with ALS, their caregivers and families. Another 50 or so general support groups cover a variety of diseases, and many of the topics they deal with would interest someone affected by ALS.

The number of people served by MDA in an area and their interests determine how many and what types of support groups are established. Some support groups may suspend or reduce meetings during the summer because of vacation schedules.

Below is a current list of MDA's ALS and general support groups across the country. If you're interested in joining an existing group or in starting a group in your city, contact your local MDA office at the number listed.

MDA SUPPORT GROUPS, FALL 1996

State
Location & Phone No.
Type of Support Group

Arizona
Phoenix (602-496-4530)
ALS

Tucson (520-795-3434)
ALS

California
Bakersfield (805-396-9151)
General

Los Angeles (213-387-2860)
2 ALS

Orange (714-550-0161)
General

Sacramento (916-921-9518)
General

San Diego (619-492-9792)
ALS

Colorado
Denver (303-691-3331)
ALS

Connecticut
Glastonbury (860-633-4466)
ALS

Florida
Ft. Myers (813-275-7272)
General

Hollywood (305-624-3714)
General

Sarasota (813-951-7890)
General

St. Petersburg (813-576-5202)
2 General

Tallahassee (904-681-6330)
General

Winter Park (407-677-6665)
3 General

Georgia
Savannah (803-556-3654)
General

Tucker (770-621-0355)
General

Illinois
Rockford (815-964-9120)
ALS

Indiana
Fort Wayne (219-486-6698)
ALS

Indianapolis (317-571-2399)
ALS

Mishawaka (219-259-9912)
ALS

Iowa
Cedar Rapids (319-393-8905)
ALS

Des Moines (515-278-8448)
ALS

Kansas
Wichita (316-838-8700)
General

Kentucky
Louisville (502-585-4924)
General

Louisiana
Lafayette (318-234-0088)
General

Metairie (504-455-4264)
General

Monroe (318-388-3252)
General

Shreveport (318-868-8882)
General

Maine
Portland (207-878-3789)
2 General

Maryland
Towson (410-494-7106)
ALS

Massachussetts
Canton (617-575-1887)
ALS

Michigan
Grand Rapids (616-459-4331)
Caregivers (general)

Southfield (810-354-0950)
ALS

Missouri
Springfield (417-866-5117)
ALS St. Louis (314-962-0023)
ALS

Nebraska
Omaha (402-572-3160)
ALS

Nevada
Las Vegas (702-739-7833) General

New Hampshire
Bedford (603-471-2722) ALS

New Jersey
W. Long Branch (908-229-1161)
ALS Caregivers

New York
Albany (518-489-5495)
General

Buffalo (716-626-0035)
ALS

Hauppauge (516-265-9333)
3 ALS

Lake Success (516-358-1012)
2 ALS

New York (212-689-9040)
2 Caregivers (general)
ALS

Rochester (716-424-6556)
ALS

Syracuse (315-451-8269)
Caregivers (general)

North Carolina
Greensboro (910-272-0173)
General

Raleigh (919-783-0222)
2 General

North Dakota
Fargo (701-235-1988)
ALS

Ohio
Cincinnati (513-791-3333)
ALS

Columbus (614-841-1014)
General

Dayton (513-296-1160)
General

Toledo (419-866-9289)
General

Oklahoma
Oklahoma City (405-722-8001)
ALS

Oregon
Portland (503-223-3177)
ALS

Pennsylvania
Philadelphia (215-322-8115)
General

State College (717-540-4619)
General

South Dakota
Sioux Falls (605-339-2728)
ALS

Tennessee
Chattanooga (615-688-6880)
General

Knoxville (615-688-6880)
2 General

Memphis (901-367-0902)
ALS

Texas
Amarillo (806-793-5632)
General

Austin (512-345-3800)
Caregivers (general)

Corpus Christi (210-650-3181)
General

Dallas (214-480-0011)
ALS

Lubbock (806-793-5632)
2 General

Wichita Falls (817-696-5581)
ALS

Utah
Salt Lake City (801-278-6200)
ALS

Virginia
Norfolk (804-461-0177)
General

Springfield (703-922-2880)
General

Washington
Seattle (206-283-2106)
5 ALS

Wisconsin
Madison (608-222-3269)
ALS

Return to Top

THE ALS NEWSLETTER
Muscular Dystrophy Association
National Headquarters
3300 East Sunrise Drive
Tucson, Arizona 85718-3208

Return to Issues Index