Grass-Roots Help

Every little bit counts, and little bits add up. Throughout the country last year, Packard Center supporters found creative ways to raise large sums for ALS research. Their grass-roots efforts yielded a total of $1,321,630. Here’s a sampling of those fund-raising feats and the people behind them.

HARVEY WERTLIEB AND FAMILY

Throughout an illustrious career in hospital administration, Harvey Wertlieb watched nursing home residents with ALS struggle as the disease overtook their muscles. So when Wertlieb himself was diagnosed with ALS at age 56, he knew just what to expect.

But he also grasped the importance of living life to the fullest. Early in his career, Wertlieb had advocated for better nursing home care. One of the nation’s first to graduate with an MBA in hospital administration, Wertlieb was also one of the first to tie the term “quality of life” to the care of nursing home residents.

And even though his own life was cut short—Wertlieb died in 2002 at age 63—he practiced what he preached. “There was never anything Harvey didn’t have time for,” recalls his wife, Linda, an interior designer in Potomac, Md., and mother to their three daughters. Linda helped carry out her husband’s mission by redesigning nursing homes with more homelike touches.

After he was diagnosed at Johns Hopkins, Wertlieb—and his family—began helping others with ALS who couldn’t afford assistive equipment. The Wertliebs also donated inspirational books to the clinic there. But their most extraordinary contribution to ALS research at Hopkins was in the form of Harvey’s brain and spinal cord tissue, in hopes that studying it might solve some mysteries of the disease.

Last year, Linda, with the support of her family and friends, organized a celebrity golf tournament in Harvey’s memory at an exclusive golf course in Rockville, Md. Hosted by Tom Watson, whose caddy, Bruce Edwards, died of ALS, the event drew nearly 300 people and raised $400,000. Proceeds were divided between the Center and Project ALS. Daughter Robin Wertlieb chaired this fall’s tourney to benefit ALS research. And even though it’s too late for her father, Robin says, “We have a chance to make a difference for others.”

If you have questions about tissue donations for ALS research, contact Lora Clawson at 410-955-8511.

MICKEY AND KEN KONIG

On Sept. 5, 1995, Ken Konig watched TV from his hospital bed in Baltimore— his wife at his side—as Cal Ripken Jr. broke Lou Gehrig’s most consecutive games streak. Ken, then 34, would have cheered, but he was too sick with ALS. He died 10 days later, leaving behind his wife, Mickey, and two children, ages 3 and 4.

Chris, now 13, and his sister, Allison, 14, remember little about their father, a 6-foot-4 truck driver who enjoyed full-tackle football, softball and golf.

Mickey Konig wants to make sure her children know what a fighter their father was. “He wouldn’t accept his fate until the day he died,” she says, “so he could live to see his children’s milestones.”

During those final days of Ken’s life, Baltimore was euphoric over Ripken’s triumph. At the time, a kind nurse—determined to evoke a smile from 3-year-old Chris Konig—gave him a Ripken poster autographed by Ripken: “To Chris: Here’s to a special night in memory of your father.”

Tapping into that spirit, the family directed donations in Ken’s memory to the Cal Ripken/Lou Gehrig Fund, which ultimately became seed money for the Packard Center. Since then, the family has sponsored annual bull roasts to raise money for the Center. Net proceeds from the past nine years topped $90,000.

Recently, at a celebration marking the 10th anniversary of Ripken’s 2,131st consecutive game, thousands of Ripken fans applauded, many sporting orange silicone “Iron Spirit” wristbands imprinted with “Cure 4 ALS.” For the Konig family—marking a sadder anniversary—Cal’s support for ALS research seems especially fitting.

JIM AND VICKI WATKINS

In 1998, after completing part one of a clinical trial at Johns Hopkins, Jim Watkins decided to take a year’s leave from his job as corporate director of the FDIC. He and his wife, Vicki, closed up their suburban Maryland home, moved aboard their 42-foot sailboat and headed south. They spent the next year cruising the Florida Keys and Bahamas, finishing in Miami. Watkins completed the Hopkins trial, commuting from wherever his boat happened to be anchored.

To Watkins, now 57, sailing has always offered a great escape from everyday pressures. So, after the initial shock of learning he has ALS, he set sail. But he refused to despair: “I realized some dreams had to be achieved, just on a tighter schedule.”

In 1999, the couple and their two adult children moved to Venice, Fla. Jim no longer sails, but he and his wife try to take a cruise every year. Soon after relocating, they became active in the Lou Gehrig Disease Association of Southwest Florida (LGDA) and have been board members for the past five years.

LGDA hosts two annual golf tournaments, among other events. Well aware of the social isolation many ALS patients and their caregivers feel, Watkins and his wife hope these events—and the LGDA patient and caregiver support group Jim established—provide a boost. They’ve made fund raising for Packard Center research a priority. For the fifth consecutive year, LGDA has donated proceeds of its events to the Center, bringing the total amount awarded to nearly $100,000.

Just as Watkins, the sailor, relished overcoming the challenges of nature, he admires the Center’s determination to find a cure for ALS. “They always provide patients with solid information and reasons to be optimistic,” he says, “without transparent unrealistic promises.”