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No throwing in towel

Kim Julian, widow of Jeff, still swinging against ALS

CAMBRIDGE -- When the long and painful ordeal was over and her husband had been rewarded with eternal peace, Kim Julian was living in her Missouri house that no longer was her home. Invitations piled up and she was free to embrace bitterness, entitled to self-pity, tempted to wash away all the memories of an insidious disease that had taken away her beloved Jeff.

She rejected them all.

Most passionately, Kim Julian refused to ignore amyotrophic lateral sclerosis, even though the progressive neurodegenerative illness had so unmercifully destroyed her world. Jeff Julian, then her husband of eight months, was diagnosed with the disease in the fall of 2001 after the couple had traveled throughout the country that PGA Tour season -- he a 40-year-old longtime resident of Vermont and journeyman golfer trying so hard to make it at the highest level, she a 31-year-old novice to the game who preferred books to birdies, both of them head over heels in love. ALS, more commonly known as Lou Gehrig's disease, changed all that -- except for the part about love. It never once put a dent in that.

''I know that I'll never be loved the way Jeff loved me," said Kim Julian, choosing her words carefully, pronouncing them slowly and with conviction.

That is why, in the months following Jeff Julian's death last July, Kim dismissed suggestions from friends and family that it wasn't a good idea for her to remain close to the medical fight against ALS. Well-meaning people who cared about her thought Kim would be better off in real estate and far away from the tragic stories of this killer disease.

She knew otherwise. She sold her house in her hometown of Branson, Mo., and moved to New England with her 13-year-old son, Tyler. Kim Julian wanted to be involved in the medical battle against the disease that killed Jeff, so she accepted a position at the ALS Therapy Development Foundation, an organization she and Jeff had grown close to in the 45 months he battled the disease. Before Jeff died at the age of 42, he and Bruce Edwards, Tom Watson's longtime caddie who was also afflicted with ALS, became the faces and stories behind Driving 4 Life, a national fund-raising campaign that funnels its proceeds to ALSTDF.

Edwards died in April 2004, Julian three months later, but Driving 4 Life has moved forward under the direction of Kim Julian. For more than three years, Kim had seen the insufferable damage that ALS causes, as right before her eyes, her husband went from a vibrant, full-of-life, fun-loving guy to a man unable to control his muscles, ravaged by the fast-moving disease that has no cure. Friends and family wondered why she was going back into that world.

Kim Julian smiled, then recalled a visit she made last fall to her friends at ALSTDF at a time when she was contemplating a move East. She worried about the adjustment Tyler would have to make, but she was sure it was what was right for her.

''I took a walk when I came here and I had an overwhelming feeling that I wanted to be here. I feel close to Jeff here," said Kim Julian, who has settled in Newton. ''When he and I visited [ALSTDF], we fell in love with it right away. ALS hasn't just taken from me, it's given to me. It gave to Jeff and I in ways you can't measure."

Search for a cure
The ALSTDF office is on First Street, not far from the Museum of Science, and it is a testament to the willpower and brilliance of Jamie Heywood, a mechanical engineer and a devoted brother. He moved back here from San Diego to help orchestrate his desire to find a cure for ALS, after his brother Stephen was diagnosed with the disease.

That was in the fall of 1998 and with Heywood's guidance, a team of doctors, scientists, and devoted employees have poured heart and soul into the ALSTDF endeavor. It is a nonprofit biotechnology company focused on discovering a treatment and a cure for ALS.

Funds are always needed, and Kim Julian is involved on that front. Many of her efforts concern a series of nationwide golf tournaments, the showcase planned for Sept. 12 at Trump National Golf Club in Bedminster, N.J., and in the short time Driving 4 Life has been in operation, more than $1 million has been raised.

She is sure Jeff would be proud. ''He always told me that the game had taught him more about life than anything else he had experienced," said Kim. ''It's a social sport. It attracts good people who want to help people."

But her commitment to ALSTDF runs deeper than organizing golf tournaments. She goes into the lab, where mice with the genes that carry ALS are monitored and studied. She asks questions about research progress. She meets with people who have ALS and their loved ones, so often distraught by the demands the disease puts on them. Like Kim Julian, the majority of people who work at ALSTDF have had personal contact with the disease and she has grown close to Stephen Heywood, who continues to inspire his brother and those who have joined the fight on his behalf.

''They are making advances," said Kim Julian. ''If not, it would be tough to come in here every day. But being here is right. It's been quite a journey and it's taught me so much about the human spirit."

Chance encounter
As so many couples do, Kim and Jeff Julian met by accident. It was a Saturday in early August 2000 and the previous day, Jeff had shot 73 and missed the cut at the Ozarks Open in Branson, Mo. His year on the Tour had not been going very well -- only one cut made in nine starts, a mere $1,480 in earnings -- and on that Saturday, it got worse.

Jeff's mother, Nancy, died of a heart attack at the age of 66.

Unable to get a flight out of town until Sunday, Jeff went to a tournament party and kept his pain to himself. Kim Youngblood had been dragged to the same party by a friend who knew many of the golfers and while she would have preferred to be at home curled up with a good book, she socialized, and danced with Jeff.

When Jeff said he had to leave town the next day, she figured it would be the last she'd see of him.

''But then he said something like, 'There's a tournament in Arkansas I might play in and maybe I'll stop by sometime next week . . .' and he paused. So I said, 'And what, take me to dinner or something?' "

Jeff smiled. He told Kim that that was exactly what he was thinking.

''I couldn't believe I said that," said Kim. ''But there was something about him."

Anyone who knew Jeff Julian would tell you that. Raised in New Jersey, Julian was a true New Englander who embraced Vermont. He had a carefree spirit, an infectious smile, and a laugh that didn't quit. A self-professed ''golf bum," he had played minitours and loosely organized circuits for most of his career, with some notable highlights. He won the Bangor Open in 1992, lost to Brett Quigley in a playoff at the 1994 New England Open, then stormed to victory in the same event the next summer. Twice he won the Cape Cod Open and in 1996, he got a taste of the big show, having earned his PGA Tour card at Q School the previous fall. He had a Nationwide Tour win in 1997.

If his golf game was stuck in neutral when he met Kim that hot August weekend, it didn't take long for things to turn around. A few months later, Jeff made it through the grueling Q School for the second time in his career. He was headed back to the big show and this time he had experience and, thanks to Kim, happiness.

The golf wasn't so good in that 2001 season but Jeff and Kim had married Feb. 15 at the Julian family farm in Vermont, just six months after they met. They were still on a honeymoon when doctors at Johns Hopkins told them his slurred speech and aches and pains were the beginning of ALS.

''The orphan disease," some people call it, because it is so rare. Only about 25,000 people in the country have it and only 5,000 cases are reported each year. Cold and cruel, yes, but it is generally referred to as a death sentence because there is no known cure. Jeff and Kim Julian refused to dwell on all of that.

''We made the decision on the road [leaving the hospital] that we weren't going to be victims," said Kim. ''We would face it and accept it, yes, but we were not going to fall victim to it."

At first, Jeff told only a few people about the diagnosis, then he went to Q School that fall, a brutally tough test under perfect conditions. He did not advance out of the second stage.

''He had played horribly and was so distraught," said Kim. ''He was crying and I told him, 'Jeff, if you want to play golf, you'll play golf.' We'll get exemptions, we'll do whatever we have to. But you'll play golf. You'll raise awareness about this disease. That will be your contribution."

When it was suggested that Jeff Julian was fortunate to have Kim by his side, she shook her head.

''When he was weak, I was strong for him. But there were times when I was weak, and he was strong for me."

In 2002, Julian got to compete in seven PGA Tour events on sponsor's exemptions, and his play at Pebble Beach and Hilton Head, the Memorial and the Greater Hartford Open was an inspiration to those who witnessed it. The scores he shot -- mostly 74s and 75s -- weren't good enough to make the cut, but what a smile he wore and just as Kim had predicted, a wave of stories brought a new awareness about ALS.

Jeff had decided to go home to Vermont to die, so that is where he went in the spring of 2004. One of the last times she spoke to Jeff, Kim asked him, ''If you're too tired to keep up this fight, I'll continue it for you. Lay down your armor and I'll pick it up."

That is what he wanted. That is what she's done.

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