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WASHINGTON-(Business Wire)-January 15, 2007 - The ALS Association today issued the following statement from Steve Gibson, vice president of government relations and public affairs, on the Food and Drug Administration's recommendations to reauthorize the Prescription Drug User Fee Act (PDUFA).

"The ALS Association welcomes the FDA's recommendations for reauthorizing the Prescription Drug User Fee Act. The agency has proposed important new initiatives and recommended increased funding levels in key areas that will benefit people with ALS (Lou Gehrig's disease) and help ensure that they have timely access to safe and effective medicines.

"While the recommendations call for additional resources to support FDA's drug safety programs, The ALS Association is particularly pleased that FDA also has proposed increased funding and new initiatives that will enhance the drug approval process and encourage new approaches to drug development.

"The proposal provides increased support for the Critical Path Initiative, an important program designed to streamline drug development. It facilitates partnerships between FDA, the public and industry that will promote new ideas to advance medical science. And it recognizes that the practice of medicine is not a one-size-fits-all proposition by examining new ways to assess the benefits and risks of medications that can save lives. Many of these initiatives were not included in prior versions of PDUFA, and we hope they will help provide new opportunities to bring ALS therapies from the lab to the bedside.

"As the debate on PDUFA reauthorization begins, it is important that Congress take action early this year to ensure the FDA has the resources to fulfill its mission and ensure patients have access to state-of-the-art, life-saving treatments. People with ALS have no time to wait.

"The ALS Association looks forward to working with Congress and the FDA to reauthorize PDUFA this year and improve patient safety by providing timely access to effective treatments."

The ALS Association is the only national not-for-profit health agency dedicated solely to the fight against Amyotrophic Lateral Sclerosis (ALS), more commonly known as Lou Gehrig's disease. ALSA covers all the bases�research, patient and community services, public education, and advocacy�in providing help and hope to those facing the disease. The mission of The ALS Association is to find a cure for and improve living with amyotrophic lateral sclerosis.

Special to The Miami Herald
BY JENNIFER COHEN

Every night when he came home from work, John Lore would get down on the floor and play with his sons, John Jr., 11, and Will, 9. He'd swing them in the air, carry them on his shoulders and bound around the house.

Today, Lore, of Weston, spends his days in bed or in a wheelchair, unable to move or speak. He is in the final stages of ALS, or amyotrophic lateral sclerosis, better known as Lou Gehrig's disease. The disease affects nerves in the brain and spinal cord, leading to paralysis. It is fatal.

Most victims' minds remain active and fully engaged, akin to being a hostage in one's own body.

Lore and wife Tracy, happily married for 12 years, had their world turned upside down in August 2003 when John was diagnosed.

''He used to sing in the church choir and noticed he had some slurring of speech,'' Tracy Lore said. ``He went to the doctor for tests and they did not find anything, so he went to a neurologist, who diagnosed him with ALS.''

Now, John Lore communicates by using special eye-tracking computer software, which enables him to scroll through words or letters to complete a whole statement before sending it to a voice synthesizer.

''We had no idea this is what it would be. We were devastated,'' said Tracy Lore, now her husband's full-time caretaker. ``There is no test to diagnose ALS. Rather, the doctors rule out every other disease. We thought it was like MS.''

John, who had no previous health problems, was able to continue working as a senior project director for the Shaw Group, an environmental remediation company, for a year after he was diagnosed. But it became increasingly difficult for him to speak and eat. Lore suffers from the most aggressive form of the disease, which attacks the mouth and throat.

A feeding tube was inserted in 2004. When the disease affected his legs and arms in 2005, he went into a wheelchair.

The cause of ALS is unknown. There is no cure.

''It is not genetic and no one in our family has it,'' Tracy Lore said. ``The average life span for someone with ALS is 18 to 24 months. John has already outlived this expectation.''

When the boys give their father hugs, Tracy will wrap John's arms around them, helping him to hug them back. The couple said they feel fortunate.

''We are still enjoying our time together and we appreciate each other more,'' John Lore said.

``I still have a pretty good life. I cherish every day that I have. It's like I was living in black and white before I got ALS and now I am living in color. . . . There are many blessings that have come because I have ALS. I am blessed by having a wonderful family. Tracy has been my angel and takes good care of me.''

The Lore boys, both students at Country Isles Elementary in Weston, are featured in a 2007 calendar, Children's Faces of ALS, photographed by Jennifer Newman. The project took a year to complete.

All money raised from sales of the calendar benefits the ALS Association Florida Chapter.

The Lore brothers are featured on the month of June with their golden retriever, Max. Previously, the boys had been on both the local news and NBC Nightly News with Brian Williams, in a segment about children of caregivers. But they would have gladly given up the spotlight if it meant their lives had not been affected by ALS.

''We can't do a lot of things because Mom has to take care of Dad,'' Will said. ``I miss being able to go to the movies or to Disney World.''

John Jr. put it more succinctly: ``ALS stinks.''

The Children's Faces of ALS calendar is available at www.als-florida.org for $15.

By Marci Laehr Tenura
The Journal Times

Phyllis Swigart said she and her husband, Ken, have had their faith tested before in life, but they feel as though they are now facing their final exam.

And they don't plan to fail.

The couple has remained unwavering and prayerful, even as Ken has been diagnosed with amyotrophic lateral sclerosis, also called ALS or Lou Gehrig's disease. In a very short time their whole lives have changed, and the couple knows even more difficult days are ahead of them.

But they are not worried about tomorrow.

"Every day is a gift," Phyllis said.

"We believe that our entire lives are controlled by God," Ken said. "That's all the way from life to death. We feel like whatever God's plan is in my life, even though it's different than I would like it, it's God's choice for me and our family. We will honor that and however He chooses to use our experience to encourage others to recognize Him as in control of every aspect of our lives, we're willing to accept that."

A life-changing diagnosis Ken was diagnosed with ALS in June. He had been struggling to keep up with his usually active lifestyle after a major surgery two years prior. He couldn't jog anymore, his leg strength and ability to walk seemed to be getting weaker. Several visits to different doctors eventually sent him to the Mayo Clinic to see a neurologist.

The diagnosis was a shock to the couple. ALS is a progressive neurodegenerative disease that attacks nerve cells in the brain and spinal cord resulting in muscle weakness and atrophy.

Currently, Ken is still able to stand and walk a little, but stairs have become very difficult for him. Eventually he will be in a wheelchair full time. Treatments, such as leg and foot therapy given to him by Phyllis; acupuncture and body massages; and pool therapy, have become a part of his weekly routine.

Although there is no cure for ALS, and Ken is aware the disease will some day take over his body, he says he is grateful for the good life God has given him. At 65, Ken counts his blessings daily, including his 42 years of marriage to his wife, their three children, and grandchildren.

They are also incredibly grateful to their many friends from college, church, work, their neighborhood and the community for their encouragement and support.

Giving back to Ken "My greatest satisfaction was gained by helping others," said Ken, who has spent his career working in finance, mostly for non-profit organizations. "Upon my retirement, I was looking forward to the likely possibility of doing voluntary missions work."

Instead, Ken and Phyllis find themselves in need of help. They are very grateful for the large group of family and special friends they have. "Today we are encouraged because many of these friends are faithfully praying for us, and consistently offering to help us in various ways."

Recently, someone from the community offered to take Ken to the pool for his therapy. The couple belongs to a health club that allows them use of the Racine Marriott's pool, and water therapy is very helpful to Ken.

"It's really a huge help to me," Phyllis said of the volunteer. "I do as much as I can. Ken used to go by himself, but it has gotten to the point where he should not. It's not wise."

In addition, many people have offered to help Phyllis with housework, grocery shopping, cooking. They have also offered daily prayers for the couple. The Swigarts are very encouraged by the support, which is particularly heartfelt from one special friend.

Ty Bryant, a college friend of Ken's who lives in Ohio, is determined to make life for the Swigarts as easy as possible. When he heard the couple was going to have to renovate their home to accommodate Ken's declining mobility, he began an effort that he hopes will help raise enough funds to do it.

"Ken would do the same for me," Bryant said.

In fact, the two men have a very special friendship that once had Ken offering his help to Bryant. Ty and his wife, Pat, went through a very difficult stage in their lives when their son had an accident and became paralyzed.

"Ken's really helped Pat and I survive," Bryant said. "He's a very other-person-orientated man. I have seen this time and time again. Ken is always concerned about other people first."

Now Bryant would like to help his friend, and, is in fact, convinced he will be able to. He has started a Web site - http://www.future-path.org - for Ken, which tells his story and allows people to make donations to the Faith Community Foundation, which has a special fund set up for the Swigarts.

Great needs, great faith After Ken's diagnosis, the Swigarts realized that their two-story home in Union Grove wasn't going to accommodate his growing needs. All the bedrooms and full bathrooms are up a flight of stairs, which have become extremely difficult for him to climb.

The couple initially looked into selling their home and buying a handicap-accessible condo in the area. But all the condos they looked at would have required renovations. "The biggest issue is none of the bathrooms had a wheel-in shower," Phyllis said. "The bathrooms were all very small."

When they couldn't find something to move into, the Swigarts began to discuss other options. They came to the conclusion that it would be most effective and least disruptive for them to renovate their current home, adding a bedroom and bathroom to the first floor. They will also have to raise their existing sunken family room and have the roof in that area of the house raised.

The couple has the floor plans for the addition and construction, they just haven't started anything yet. That's because just the beginning costs for the renovation will probably be around $50,000 to $60,000.

But Bryant wants to get this accomplished for his friends. "We're all people of great faith," he said. "We're going to trust that $50,000 comes in. People think I'm crazy, but I'm praying this big. We're trying to see how fast we can get this building project up and running."

In fact, Bryant wants to have a groundbreaking ceremony this weekend while he and two other college friends are here visiting Ken.

Looking to the future Down the road, the Swigarts know they will have additional expenses, such as a special van with a lift for a wheelchair, and other special equipment for their home. The also know Ken's health will continue to decline. But they remain faithful.

"The only reason I'm able to cope is because I know where he's going," Phyllis said of her husband. "We believe in the everlasting."

� Associated Press 2007
Published: Monday, January 08, 2007

LONDON -- World renowned British astrophysicist Stephen Hawking wants to go a place he has only theorized about in his long career: space.

"This year I'm planning a zero-gravity flight and to go into space in 2009," he was quoted as saying in the Daily Telegraph newspaper.

Hawking, 65, has said he hopes to travel on British businessman Richard Branson's Virgin Galactic service, which is scheduled to launch in 2009. The service will charge space tourists about US$200,000 for a two-hour, suborbital trip some 140 kilometres above the Earth.

Branson was keen to help the scientist realize his dream of space flight, Virgin Galactic spokesman Stephen Attenborough said Monday.

"Richard is very determined that if we can possibly make this happen, then it should," Attenborough said.

He said the company had not discussed the issue of payment with Hawking.

One of the best-known theoretical physicists of his generation, Hawking gained fame with the bestselling book "A Brief History of Time."

The scientist, who uses a wheelchair and communicates with the help of a computer because he suffers from a neurological disorder called amyotrophic lateral sclerosis, commonly called Lou Gehrig's disease, has done groundbreaking research on black holes and the origins of the universe, proposing that space and time have no beginning and no end.

Hawking has warned that the survival of the human race depends on its ability to find new homes elsewhere in the universe because there's an increasing risk that a disaster will destroy Earth.

Copyright 2007 Dow Jones & Company, Inc.
Wall Street Journal
All Rights Reserved
By CLARE ANSBERRY
January 5, 2007; Page A1

PAULDING, Ohio -- Every morning, at about 6, Jordan Wilhelm goes into his parents' room to lift his father out of bed.

The 17-year-old high-school senior carries his dad down the hall to the bathroom, his mother following behind. He helps her get him into the shower, and then dressed, slipping pants on his father's legs and coaxing his arms through shirt sleeves.

During the week, if his father falls out of his wheelchair or has to use the bathroom, he calls Paulding High School, saying he needs Jordan home. With the school less than a mile away, Jordan arrives in minutes. He helps his father back onto his green recliner in the family room, draping a plaid blanket over his legs, before returning to class. "It's my life," says Jordan. "Even when I was young, he couldn't do a whole lot."
[Jordan helping Mr. Wilhelm]1
A.J. Mast/Getty Images
Jordan Wilhelm helps his dad, Paul Wilhelm, guide his wheelchair up a ramp at their house.

Paul Wilhelm, 55 years old, has multiple sclerosis, a progressive and chronic condition. Though his wife, Sue, works two jobs, the family can't afford someone to help care for him. Mrs. Wilhelm looked into it a few years ago. The going rate was $15 an hour, she says, twice what she was earning at the time and not covered by insurance. So she and her husband have come to rely on their children.

Many parents do. Across the country, children go about providing home health care to parents, grandparents or other relatives. They suction breathing tubes, change catheters, and run steroids through IVs. These children assume household chores at early ages, preparing meals and doing laundry for a parent who can't. In many ways, the care they provide mirrors or exceeds the tasks that often overwhelm adult children caring for an elderly parent.

The ranks of young caregivers are large and expected to grow, given advances in medicine and technology. People with conditions such as Lou Gehrig's disease, multiple sclerosis, lupus, cancer and heart disease are living longer. With portable machines that help them breathe, swallow, and communicate, paralyzed parents can remain at home longer.

A 2005 study found as many as 1.3 million to 1.4 million children in the U.S. ages 8 through 18 provide care for a chronically ill or disabled family member, based on a two-part survey that included random sampling of 2,000 households and follow-up interviews with children and other family members. Policy makers and family advocates say they had been unaware that so many children were providing such care. Previous studies only polled caregivers 18 or older. "It is the norm to think of children requiring care, not providing it," explained authors of the study.

The study, funded by the U.S. Administration on Aging and conducted by the National Alliance for Caregiving and the United Hospital Fund Foundation, found nearly 60% of child caregivers helped with a task such as bathing, dressing or feeding. A fourth of the children had no one helping them with the tasks, and about half said the caregiving took a significant amount of their time. Boys were almost as likely to provide care as girls. More than 400,000 were under 12. About 60% of the children came from households earning less than $50,000.

While motivated by love and devotion, these children often have little choice. Many live in single-parent homes, with only the infirm parent. In two-parent households, the healthy parent may be working. Few can afford paid home-care help, which generally costs from about $140 to $180 a day. Skilled nursing care costs much more.
[kids]
Jordan Wilhelm (left) helps his father, Paul, who has multiple sclerosis, into a chair at home.

Most private health-insurance policies don't cover in-home care, unless they are specific -- and expensive -- long-term care policies. Medicare, the federal insurance program for the elderly and those under the age of 65 with certain disabilities, will pay for hospitalization and some in-home care when considered medically necessary, such as when a person has open wounds, is recently released from a hospital or receiving hospice care. But it doesn't provide continuing in-home help for people with chronic conditions, even if they're on life-support systems.

David Queen was diagnosed with amyotrophic lateral sclerosis, or Lou Gehrig's disease, in 1986 -- two months before he married. Doctors said he had six months to three years to live. They were wrong.

Now 47 and living in Wayne, W.Va., Mr. Queen has two teenagers, Amanda, 19, and Judd, 17. He breathes through a ventilator and communicates through a computer. His wife, Debbie, works full time doing clerical work for a state agency. She earns $13,000 a year and gets health insurance, which covers hospitalization but not in-home help. She pays to have someone sit at home with her husband while she is at work and her children are at school. After the sitter is paid, she is left with $90, which must last for two weeks.

The children helped with his care from an early age. When Amanda was 5, Mrs. Queen had to run a quick errand, leaving her and Judd, then 4, playing on the floor near their father.

Mr. Queen started choking. Amanda climbed on a stool next to his chair. Having watched her mother do this before, she turned on the suction machine, opened the cap that covered her father's trachea, inserted a catheter down his tube and suctioned the phlegm that was choking him. Her father began breathing. Amanda handled the task "just like a pro," says Mr. Queen.

Amanda and her brother now routinely feed their father, by releasing a liquid supplement into his feeding tube with a syringe. Amanda changes his tracheotomy tubes, a delicate and often messy process typically handled by a respiratory therapist, which the family can't afford.

Without children helping to provide care, some of these parents would likely end up in an institution, such as a nursing home. Institutional care is generally more expensive, but it is usually covered by Medicaid.

Placing so much responsibility on young people can end up being costly. "If a family breaks apart because the burden becomes too much for a child, you're talking about two institutional placements: The parent in a nursing home and the child in the foster-care system," says Nancy Law, of the National Multiple Sclerosis Society. The society, which offers some respite care to families and scholarships to children whose parents have MS, is launching a pilot program to help child caregivers.

A handful of states offer vouchers or tax credits for respite home care, to provide a break for caregivers. The Lifespan Respite Care Act, passed last month, authorizes the Department of Health and Human Services to award a limited number of grants to selected states to make temporary help available. Friends and relatives often offer assistance as well.

Many children become more responsible and compassionate caring for a parent, but it can take a toll. "Worry is a big thing for these kids," says Connie Siskowski, head of the American Association of Caregiving Youth in Boca Raton, Fla., which offers support services to 260 local families.

Like new parents, they check on a mother or father in the middle of the night. Interest in school or sports may fade. They wonder what will happen when they turn 18 and want to go to college or leave home, and whether their parent will be able to cobble together care from neighbors or other relatives.

Marissa Fleming, 18, of Beaver Falls, Pa., will occasionally get mad at her mother, who is single and has MS. With MS, one day a person can walk and the next day they can't. These on-and-off symptoms, which baffle doctors, are even harder to fathom for a child.

"It feels like she doesn't want to help, not that she isn't able. I feel like she's Mom and she should be doing things," says Marissa, an only child. Along with giving her mother injections and helping get her showered and dressed, Marissa buys groceries, cooks and washes clothes. In the summer, she worked two jobs, going straight from Subway to Rita's Italian Ice.

"Sometimes I say stuff to my mom and it usually starts an argument. Then I feel bad," Marissa says. Going out with friends leaves her torn. She wants a break from tending to her mother, but "I worry about her."

Her mother, Maria, tries to keep requests to a minimum, waiting to ask for water until she needs something else. "I try to think of three things I need, so I don't have to ask her separately," says Ms. Fleming.

Some parents try to find ways to make their disease less of a burden, especially for young children. In Minneapolis, Adina Goldstein, a divorced mother with MS, suggests to her 10-year-old son, Danny, that they have a picnic on her bed when she can't get up. Having a son or daughter provide what is, at times, intimate or serious care adds another disconcerting dimension. But parents may have few options.

With no family in the Cleveland area, Sue Nerlinger, a 52-year-old single mother, relies on her twin 16-year-old boys to cook, help her into bed and make repairs on the fixer-upper she bought about two years before she was diagnosed with MS. Her son Charles began mixing medicine and giving his mother shots after watching a video provided by the pharmaceutical company. Her other son, Tom, has stayed home from school when she has fallen.

After her diagnosis, Ms. Nerlinger vowed she would never subject her sons to helping her get into the bathtub. That lasted until this summer, when she lost the use of her left side and couldn't walk or stand on her own. Reluctantly, she asked for their assistance, but kept her robe on until they left the bathroom. Tom returned repeatedly to the door, shouting, "Mom, are you OK?"

"I hoped I would never have to face that with the boys," she says.

Jordan Wilhelm, the Ohio high-schooler who lifts his dad out of bed each day, never knew his father when he was healthy. Neither did his two older sisters.

At first, the children saw their father's illness almost as a novelty. No other dads had a collection of canes, including one with a sword hidden in the shaft and another with a car's shifter knob welded on top. By elementary school, when their father could no longer walk and had to get an electric scooter, all three children would hop on it, beeping the horn and taking turns steering.

On Sundays, the entire family would ride to St. Joseph Catholic church, Mr. Wilhelm on his scooter, the children weaving their bikes alongside, Mrs. Wilhelm following on her own bicycle. They went on limited family vacations, driving 30 minutes to a hotel in nearby Defiance, Ohio, where the children swam in the pool.

While the children were still in grade school, Mr. Wilhelm was getting worse. A mechanic, he could no longer work at Paul & Dan's Radiator Shop, which he owned with his brother. Aware of his knowledge about cars, and his growing limitations, friends offered him jobs working in a store that sold Nascar items, and later at Advance Auto Parts, where he could ride down the aisles to help customers locate parts and answer the phone.

Mrs. Wilhelm took a job at a factory which provided health insurance. The insurance helped pay for treatment, including injections and steroids. But none offered lasting improvement. When a friend suggested an alternative therapy that would require the family's involvement, the children volunteered.

The man, who raised bees just outside of town, sent them a book called "Health and the Honeybee" describing how bee venom was used to treat diseases. Three times a week, the children -- then ranging from 8 to 11 -- went with their father to the farm. The girls took 20 live bees, impaled on pins, and stuck them into their father's legs, so the bees would sting him and release venom. Jordan's job was to remove the stinger with a razor. It was frightening, but "I did it because I thought it would make dad better," says Valerie, now 20.

Almost immediately, Mr. Wilhelm, who had been slurring words, began speaking clearly, which the bee farmer and family attributed to medicinal powers in the venom. The family rejoiced. But after several months, Mr. Wilhelm's legs began swelling and his doctor said the venom was poisoning him.

Eventually, he had to quit working and trade the scooter for a wheelchair. Any lingering novelty was gone. They added a ramp to the garage of their single-story brick ranch house. When Mr. Wilhelm could no longer lift his leg to get into the tub, the family replaced it with an open shower, with metal handgrips.

The physical decline was depressing. But his emotional change, due either to his condition or medication, disturbed the children too, especially as they got older and more self-conscious. Mr. Wilhelm would weep during movies, or in church when he heard an inspirational verse.

Not knowing what to do, his youngest daughter, Marilyn, would pat him on the back, saying, "It's OK, it's OK," while privately wishing he would be tougher or that she could disappear. "It was kind of embarrassing," says Marilyn, now 19. "As a kid, you don't see anyone else's dad doing that."

In 2002, Mr. Wilhelm's hands began shaking so much he couldn't hold a fork or spoon. The treatment of last resort -- chemotherapy -- didn't help. As he declined, his children became reluctant to leave him alone. In school, when ambulances sounded a siren, Valerie said a prayer that it wasn't for her father. Jordan started turning down invitations to sleep over at friends' homes. "It was more helpful for me to be at home," he says.

Relatives provided some assistance: Mrs. Wilhelm has a mother and brother nearby, and Mr. Wilhelm has three brothers and two sisters in the area. But day-to-day tasks fell to the immediate family. The children would argue over whose turn it was to feed their dad or empty the urine bag, and then feel guilty about it. "If we continued to keep score," says Marilyn, "father would not get fed or go to the bathroom."

By then Mrs. Wilhelm had taken a job as a teacher's aide so she could come home on her lunch hour and feed Paul. It provided insurance, but starting pay was only $7.50 an hour. Although she is now an office manager, earning $9.75 an hour, she works Thursday nights and Saturdays at a dentist's office to help pay bills.

Knowing the demands on his children, Mr. Wilhelm tried to inject some humor into the routine. He joked, his speech slow and labored, but clear to them, saying they had "earned an extra cookie for the day" by adjusting him in his recliner or getting him his medicine.

In their town of 3,500, locals have helped too. When Mr. Wilhelm rides his motorized wheelchair to Bubba J's, a restaurant a few blocks away, either the owner or one of the waitresses will feed him. Mrs. Wilhelm's boss's husband collected money from the community and recently bought the family a 1987 van, with a lift for Mr. Wilhelm's wheelchair, so Jordan doesn't have to carry him in and out of the car.
[kids]
From left, Jordan Wilhelm with parents, Paul and Sue.

In the past year, Mr. Wilhelm has lost the use of both arms. He can't sit up on his own. A weight is strapped to his right hand to still tremors and allow him to operate the remote that moves his recliner.

With both of her daughters now in college, Mrs. Wilhelm says more responsibilities have fallen on her son. "I can't do anything with Paul without Jordan," she says. If his father has a doctor's appointment, Jordan takes time off school or work, and stays up all night when his father has a stomach virus. This summer, Jordan worked a shift from 4:30 a.m. to noon at a local turkey farm, cleaning barns and feeding birds, so he could be at home in the afternoon.

"It hits Jordan harder because he is on call most of the time," says his sister Marilyn.

Last year, Jordan became depressed and anxious. He began having panic attacks, lost interest in his friends and couldn't concentrate, he says. He dropped out of band, though he had played trombone since middle school.

When his father wanted to be moved or wanted water, Jordan became irritable. "Everything I did was repetitious and got on my nerves. I'd get up. Go to school. Go to work. I didn't have any down time. I'd come home and dad would ask a simple question, like 'Can I use the bathroom?' and I'd get angry and yell at him and it made him mad," says Jordan. "After, I felt bad about it. I didn't mean to do it, but I got so tired of doing everything."

His mother suggested he talk to a therapist. That has helped keep his father's care in perspective, Jordan says. He has already told his mother he will go to college nearby, so he can live at home and take care of his dad for the foreseeable future. Mrs. Wilhelm hopes to continue working for at least six more years, so she will have the required time to receive health insurance after she retires.

As a boy, Jordan was often with his father at the radiator shop, listening to him explain how cars work, fascinated by engines and motors. Now, he takes his father to the workshop behind their house. Mr. Wilhelm watches from his wheelchair and gives advice, while Jordan restores a cherry-red 1965 Chevrolet Chevelle.

On a recent afternoon, Mr. Wilhelm sat in his family room and said to his son, "Jordan, bring my pride and joy around." Minutes later, Jordan drove down the driveway, pausing to idle the car, so his father could admire it from the window.

Posted By Andrea Anderson on January 4th, 2007
Scienceline.com

Hynek Wichterle left the Czech Republic on the heels of a political revolution. Now, he is one of a growing number of scientists participating in a quiet scientific revolt in the United States by using private funding to fund his work in the controversial field of human embryonic stem cell research in order to circumvent federal funding restrictions.

Wichterle, an assistant professor of pathology at Columbia University, is a senior scientific advisor for Project A.L.S., a non-profit organization created to find a treatment or cure for amyotrophic lateral sclerosis, commonly called Lou Gehrig�s disease.

Project A.L.S. recently opened a privately funded lab in New York City where controversial research, including work on embryonic stem cells, will proceed unfettered by federal funding limitations. The lab operates under tight security in a secret location due to safety concerns.

Wichterle was looking for new experiences when he left the Czech Republic in 1993, soon after the Velvet Revolution. �There were not a lot of opportunities to go abroad,�� Wichterle recalls. Taking advantage of a �fortunate opportunity,� he accepted what he thought would be a short-term position as a research technician in the Boston laboratory of another Czech scientist. Less than a decade later, with a Ph.D. in hand, Wichterle published his most influential work on directing stem cells to a specific fate.

Wichterle speaks quietly and thoughtfully as he describes his research, making it sound deceptively simple, while illustrating his points with cartoon drawings of cells and embryos on a lined pad of paper.

Wichterle�s method for systematically directing the development of stem cells into specialized neurons demystified� stem cell biology, a field that was, at times, close to alchemy,� according to Thomas Jessell, a neurobiology professor at Columbia and research advisor for Project A.L.S. As Wichterle�s post-doctoral mentor, Jessell witnessed his research first-hand. He calls Wichterle an original thinker and remarkably intuitive scientist�.

Wichterle has used stem cells from mice to recreate important steps of embryonic development: the transition from a mouse embryo with unspecialized cells to an adult with distinct cell types. Specifically, he developed a surefire method for converting mouse embryonic stem cells into cells that look and act like motor neurons.

Motor neurons, the cells that transmit nerve signals between the spinal cord and muscles, rapidly degenerate in ALS patients, causing physical disability and eventual death. The ability to generate these cells in the lab provides a tool to help scientists study the disease.

Motor neurons are not all the same, nor do diseases such as ALS affect them in identical ways, Wichterle explains. Generally, ALS affects a patient�s limbs first. This means that the neurons sending signals to the arms and legs degenerate before those connecting to the back or abdomen, for example.

By creating various types of human motor neurons from stem cells in the lab, Wichterle hopes to find differences that protect some motor neurons from the disease. If he can find those differences, researchers will have a better understanding of how the disease develops and may eventually be able to create a protective environment in the more sensitive cells before the ravages of ALS set in.

Wichterle was confident enough in this approach to forgo federal support in order utilize it for human stem cell experiments. �What Project A.L.S. is trying to do is open a lab space that should be accessible to researchers in academic institutions such as Columbia University, and also other institutions in New York City and the vicinity, that want to work on [embryonic stem] cells that are not �presidential,��� Wichterle explains.

�Presidential�� cells are the only human embryonic stem cell lines currently approved for research in federally funded labs. These include lines - collections of stem cells with the same genetic makeup - that existed before August, 2001. At that time, President Bush issued an executive order prohibiting federal funding of research using newly created lines.

Last July, Bush used his first-ever veto to defeat a bill that would have expanded the type of stem cell research eligible for federal support. The bill would have allowed scientists to use newer embryonic stem cell lines generated from embryos donated by parents undergoing in-vitro fertilization.

Dr. William Hurlbut, a medical ethicist at Stanford University and member of the President�s Council on Bioethics, agrees with Bush�s decision, and opposes funding the kind of research that Wichterle conducts. Because generating new embryonic stem cell lines destroys embryos, something many Americans find morally objectionable, Hurlbut says federally funding this research would be an �institutional endorsement�� of technology contrary to the values of many of the taxpayers supporting it.

But many researchers argue that the selection of presidential embryonic stem cell lines is insufficient. Jessell likens the situation, in which researchers must choose from a handful of available stem cells lines for all kinds of research, to being given two cars and being asked to choose one to drive in all terrains, be it the Andes mountains or Sahara desert.

Because Wichterle�s proposed ALS research will use stem cells and techniques that are not federally approved, he cannot do some of his research in a publicly funded lab.

Wichterle describes an even more ambitious and controversial approach he hopes to use in his private lab: using a technique called somatic cell nuclear transfer (SCNT) to create embryos containing stem cells that are genetically identical to ALS patients�. Sometimes called �therapeutic cloning,� this technique involves transferring DNA from the nucleus of an adult donor cell to a modified egg to create cells identical to the adult donor.

Not everyone shares Wichterle�s enthusiasm about such techniques. Hurlbut decries all forms of SCNT and other research that require destroying embryos, saying that they lead to increasingly difficult choices that �degrade the very humanity they are trying to heal.�

Though there is currently no federal law against it, there have been attempts to ban all forms of SCNT in the United States. Wichterle acknowledges the controversy, but seems unfazed by it.

�You can argue that many things scientists do in the laboratory could be misused and could develop into potentially harmful things,� Wichterle says, �but that doesn�t argue for banning this kind of work.�

Judy Siegel-Itzkovich, THE JERUSALEM POST
Dec. 13, 2006

Cambridge University theoretical physicist Prof. Stephen Hawking has decided to donate DNA samples to the Human Genome Project in the hope that the data will help scientists identify the causes of Lou Gehrig's disease, The Jerusalem Post has learned.

The incurable neurological disease, also known as amytrophic lateral sclerosis (ALS), has afflicted Hawking for 43 years, since he was a graduate student at Cambridge.

The cause of ALS, which causes eventual paralysis and death, is not known, but doctors believe there is a genetic component.

The renowned scientist - reportedly the longest ALS survivor in the world - has been offered implantation of electrodes in his brain, a procedure that has been of help to some Parkinson's patients in Israel and abroad, but he turned this down, saying he did not want to undergo brain surgery. Most victims of the disease die within a few years of diagnosis.

The 64-year-old Hawking, currently nearing the end of an eight-day visit to Israel and the Palestinian Authority, met Israeli physicists at the Center for Excellence at Neveh Shalom before visiting Tel Aviv University on Tuesday. On Wednesday, he will deliver a lecture at Birzeit University in Ramallah; on Thursday, he will speak on "The Origin of the Universe" before 1,000 invitees at the Hebrew University's Mt. Scopus campus.

On Monday, he was the guest at an intimate dinner at Jerusalem's King David Hotel of the Israel Academy of Sciences and the Arts, headed by Prof. Menachem Ya'ari.

He was toasted by British Ambassador Tom Phillips and Ya'ari, who "celebrated the triumph and exhilaration of science and of a human spirit over adversity."

Phillips, who arrived here in August, said he had so far met two kinds of people - those who haven't read Hawking's books on cosmology and physics and those who have read them but understood only some of the ideas.

He was sure that Academy of Science members had read them and understood them. Phillips said that he asked Prime Minister Ehud Olmert, when he received Hawking in his office on Sunday, whether he had read the brilliant physicist's A Brief History of Time, Olmert assured him that he had.

Hawking said, "I am happy to be back in Israel again. I have been here three times before, the last in 1990... I was sad to see how the [security] wall separates [Israelis and Palestinians]. There is a great difference between universities on this side of the wall and those on the other side. But it is good to hear what you are doing in cooperation with Palestinian scientists."

Commack man gets the ride of his dreams
BY SOPHIA CHANG
Newsday Staff Writer
Copyright 2007 Newsday Inc.
December 30, 2006, 9:27 PM EST

The rumbling noises coming from the street Saturday afternoon weren't quite enough to lure Edward Puletz outside his Commack home.

But urged by his mother, his three children and his wife, Puletz went out the front door, walked down his driveway and watched 32 Corvettes park on his residential, and usually quiet, block.

"Wow," Puletz said, wide-eyed. He rubbed his face and said it again. "Wow."

Puletz, a civil engineer who served in the U.S. Navy during the Gulf War, turned 40 years old today. Last March, he was diagnosed with amyotrophic lateral sclerosis, or Lou Gehrig's disease, a terminal neurodegenerative disease.

So his mother, Irna Puletz, decided to make this birthday special. When she was visiting Puletz over Thanksgiving, she noticed several photos of Corvettes displayed in the garage, next to the family's Toyota and Nissan sedans. She learned that her son had always wanted one of the classic all-American sports cars.

"So I went online and I typed in [a search for] Long Island Corvette clubs," said Puletz, who was in town Saturday from her Florida home as another surprise. "That's when I started talking to this fellow Richie."

Richie Shields, the president of Long Island Vettes of East Meadow, activated his network, with a special call for 1966 Stingrays, Puletz's favorite model because "it was the year I was born," he said.

Saturday afternoon, four Stingrays, 28 other Corvettes and about 50 of the people who love them met at a nearby park before convoying to Puletz's house.

"It's not often we can make somebody's wish come true," Shields told the Corvette owners, who came from his club as well as the Long Island Corvette Owners Association of East Meadow, the Corvette Society of Levittown, and the Metropolitan Chapter of the National Corvette Restorer Society of Smithtown.

"My brother died of the disease," said Marty Fingerhut, 57, of East Moriches, who stood near her 2004 red Corvette. "It's a good thing to do this."

The plan was to allow Puletz to choose his ride and then take him on a drive to Sunken Meadow State Park in Kings Park. Puletz was brought to visit each Corvette and the owners, eager to show off their babies.

"There are only 53 of these with the red seats," said Bill Hermanek, of Smithtown, patting his car, a 1996 Grand Sport convertible in blue and white. Puletz nodded with admiration.

"I've been to a few Corvette shows, but I never thought one would come to my house," he said.

Ultimately, a 1966 Laguna Blue 427 Stingray convertible, owned by Mark Tulley of Carle Place, was the chosen Corvette.

Puletz sat happily in the passenger seat. "Top up?" Tulley asked Puletz to see if he'd like the cloth roof raised during their drive in the winter wind.

"Down," Puletz replied.

Thursday December 28, 2006
CopyrightThe Herald-Mail ONLINE
by MARLO BARNHART

HAGERSTOWN - Paul Gould's appreciation for classical music was plain to see on his face as he listened to his friend, Leah Claiborne, play the piano for his enjoyment a few days before Christmas.

"I so look forward to her visits and her music," Gould said. "I was a piano player myself until five years ago."

A former chief financial officer for Frick Co. in Waynesboro, Pa., Gould has been a resident at Western Maryland Hospital Center in Hagerstown for the past two years.

Gould, 67, has amyotrophic lateral sclerosis, also known as Lou Gehrig's disease. Confined to a wheelchair, Gould wears a head brace, is dependent on a ventilator and rapidly is losing the dexterity in his hands and fingers.

There is no cure for ALS.

"In 1998, I was jogging when my knee gave out," Gould said. He attributed that to an earlier tennis accident and moved on with his busy life.

But then every few weeks, something else would happen, so Gould finally went to a doctor, beginning a long quest to put a name on whatever was working on him.

"At Johns Hopkins, I was told I had ALS," Gould said. "They gave me one year to live ... in 1998."

Gould, who continues to beat that dire prognosis, said he still was able to walk in 2002.

Shortly after coming to Western Maryland Hospital Center, Gould met Leah, then 14 and already a piano prodigy. Leah's mother, Angie Claiborne, is director of integrated patient-care services.

"I was getting ready for a national competition then," said Leah, now 16 and a junior at Tuscarora High School in Frederick, Md.

When Leah's mother told her about Gould's situation and his love for classical music, the two got together and have been visiting regularly ever since.

"I would practice my programs here, and Paul would come to listen," Leah said.

Busy with school and other activities now, Leah said she doesn't get to visit Gould as often as she would like. A lot of her time is spent looking for the right conservatory to continue her education after next year.

That's where Gould has offered to help his young friend.

"I have a cousin who is director of the San Francisco Symphony Orchestra and known worldwide," Gould said. "I want him to recommend Leah to Juilliard in New York City."

N. Linn Hendershot, director of communications at Western Maryland Hospital Center, said Leah and Gould truly have bonded. When they visit, residents and staff gravitate to the music room to listen.

"Paul is so realistic about his disease," Hendershot said. "He knows he will soon lose touch on his laptop computer, so he's learning nose control."

That involves a device that allows the user to turn his head and point a light at the keyboard to activate a key, Hendershot said.

"I have a great family," Gould said. His wife, Judy, lives nearby, but his children are scattered in California, New York, Florida and Colorado.

On a recent journey outside the hospital, Gould purchased Web cams for every member of his family and for himself. Now, they will be able to see and talk to each other in real time.

Despite his illness, Gould said he finds great joys in life, including his visits with Leah and listening to her music.

"You make the choice to live or to die," Gould said. "I chose to live."

06:37 PM CST on Thursday, December 28, 2006
By JIM BERGAMO
KVUE News

When New York Yankees great Lou Gehrig delivered this famous speech back on July fourth, 1939, he was already in the degenerative stages of amyotrophic lateral sclerosis or ALS. ALS would soon become known as Lou Gehrig's disease.

"Today I consider myself the luckiest man on the face of the earth," he said at the time.

Now another major leaguer, current Boston Red Sox pitcher Mike Timlin, has seen a family member succumb to the disease. Timlin's mother, Shannon, passed away in 2002.

"She had such a love of life. It was just devastating to lose someone who had so much to give this world," said Tracy Schach, Timlin's sister.

Schach is filled with family pride. She prefers to remember her mother this way, instead of in the throes of ALS.

"It just robs a life from you so quickly," she said.

Schach marvels that ALS has remained almost as much of a mystery as it was when Gehrig put a face on the disease 67 years ago.

"It doesn't make any sense, and there's not enough knowledge as to why this is happening, what makes the system shut down the way it does and why is it genetically in this family, but not in this family. So it's a huge mystery," she said.

So in an attempt to raise money for ALS research and spread awareness about the disease, Tracy said, "I woke up one morning and said, you know, I think I'll walk from Austin to Boston."

The walk will be roughly 2,000 miles. She'll leave Austin on March 1 and plans to be in Boston in time for the annual 5K in her mother's name, which is a major league accomplishment that even Mike has to be proud of.

"Because of the ability that God gave him, we are able to help other people, and that's what this is all about," Schach said. "It's not about me or what I'm doing; it's about what I'm doing, it's about the fight, about winning the battle. That way I don't have to see anyone else feel the pain and sorrow that I did."

Tracy says by walking 20 to 25 miles a day, she should make it to Massachusetts in 80 days. But she's given herself 100 just to play it safe. If you'd like to make a monetary donation to help Schach's trek or to ALS research, call Schach at (512) 431-9342.

TIMES WIRE SERVICES

Twenty years after Steve Smith helped Penn State win the 1986 national title, the former fullback is fighting for his life.

Smith's body is failing him, ravaged by Lou Gehrig's disease. Former college teammates are coming together to help the former Nittany Lions captain, who went on to play for the Raiders from 1987-93.

"You talk to Marcus Allen, you talk to Bo Jackson, or any running back that had him as a fullback, you never had to worry," former Penn State teammate D.J. Dozier said. "This man had his block. Whatever he needed to do, he was going to get it done."

That's why the three other captains from that Penn State squad -- John Shaffer, Shane Conlan and Bob White -- traveled to rural Woodward, Pa., recently to sign a lithograph depicting a scene from the 14-10 win over Miami in the Fiesta Bowl that secured the Nittany Lions' 1986 title. Dozier, who ran behind Smith's blocks, organized the effort. He says a portion of the profits will go to Smith's family to help pay medical bills.

Reliant on a ventilator, Smith can't talk. He has been fed formula through a feeding tube since May. He can't leave home, given all the medical machinery.

"Despite the situation, he's holding steady," said his wife, Chie, who was reached at the couple's home in Richardson, Texas. "His spirits are much better than his body is."

Lou Gehrig's disease is a degenerative nerve disease, also known as amyotrophic lateral sclerosis, or ALS, which gradually destroys the ability to control movement.

Smith's first diagnosis came in July 2002. A second opinion a month later, and a finally a third opinion -- on Sept. 11, 2002 -- confirmed their initial fears: He had Lou Gehrig's disease.

"Pretty much, the word would be he is 'paralyzed' from illness," said Chie Smith, who was a Raiders cheerleader when she met her future husband.

Smith's wife cares for him full time. There also are two teenage children to raise -- Dante and Jazmin -- and ALS groups have said it takes as much as $250,000 a year to care for a patient.

� Copyright 2006 newsreview.info

While Julie Brizendine may be in a wheelchair, those who love her say she�s the same woman they�ve always known.

Those with physical disabilities have more physical demands, says Brizendine�s caregiver Leah Willis, but their desire to fit in and have relationships is as real as anyone else�s.

At 48, Brizendine was diagnosed with Amyotrophic Lateral Sclerosis or Lou Gehrig�s disease, a progressive neuromuscular disease that affects nerve cells in the brain and spinal cord.

Brizendine, now 51, says, �I�m still me. I just can�t walk.�

LIVING WITH ALS

Before living with ALS, Brizendine was active and independent. She helped maintain her Roseburg home and worked full time as the office manager of the Douglas County/Oregon State University Extension Service, where she was solidly employed for 30 years. She was a volunteer leader for 4-H for 15 years.

She and her husband Rusty Brizendine, 57, had raised a son, Brent Brizendine, 24, who now lives in Corvallis.

Brizendine retired in 2003 to turn her attention to baby-sitting her former co-worker Robin VanWinkle�s daughter, Hannah, now 4, and later, her great-nephew, Mason Amos, now 2. It was her greatest desire to care for children in her retirement.

She watched Hannah for a little more than two years and her great-nephew for about a month before quitting out of fear she might drop him.

Her muscles had begun to weaken.

Before being diagnosed, Brizendine started losing dexterity in her right hand.

Determined to continue the lifestyle to which she was accustomed, she used her left hand more.

She even started bowling left-handed, her highest score being an impressive 140 points.

After seeing physicians who eliminated other diseases of the neurological system, Brizendine was diagnosed with ALS in November 2003.

Around a year later, her equilibrium became unsteady as she struggled to walk and to stand without assistance.

The disease, she explained, weakens every muscle in the body except the heart.

She eventually became unable to walk at all and has minimal use of her left arm, just enough to run the wheelchair.

�I can move my arms and legs, but my arms can�t support a piece of paper,� Brizendine said. �It�s too heavy.�

Standing for five minutes wears her out.

Even sitting can be taxing.

�Your bottom can only take so much,� she said.

Her speech is slow yet steady and understandable, and her hearing, pristine.

�I have good hearing when I want to hear,� she says gleefully.

Little things she used to do without thinking, like scratching her head when it itches, now require assistance.

As caregiver, Willis, who knows Brizendine through her affiliation with 4-H, said working with her has put things in perspective.

�I don�t have anything to complain about,� Willis said.

Caring for someone with a disability has made Willis keenly aware of how people with disabilities are treated in public places and by businesses.

Situations are not always handled tactfully and respectfully.

�They don�t talk to her necessarily. They talk at her,� Willis said. �It�s made me aware, if you see someone who needs help, stop and help them. It could be you someday. You don�t plan for things like this.�

Brizendine said those in wheelchairs should be treated just like someone who�s walking.

But, ever positive, she sees the perks: �At the airport, I get first in line.�

�I think I have always been pretty positive,� she said. �I think it�s the way I am � sickness or not.�

Willis said despite her condition, Brizendine still wants to be seen as a wife, a mother and a friend. She said in no way does Brizendine want to impose or be a burden to anyone, especially her husband.

Rusty Brizendine, a self-employed mechanic, said the most challenging part of his wife having ALS is that there�s nothing that can be done about it.

He�s built two lifts � one to transport her from the wheelchair to the bathing chair and another to carry her from the wheelchair to the bed. The mechanisms help save helpers� backs.

�It�s my Disneyland ride,� Brizendine said.

Rusty said, �You can�t fix the problem, so you try to make it easier.�

SHARING LOVE

Brizendine has developed a new passion since she retired: the Food Network.

Laurie Miller, a former co-worker of Brizendine�s, joked that an important quality about care giver Willis is that she�s also a gourmet cook.

One of Brizendine�s favorite outings is the occasional trip to Eugene to eat at the Olive Garden and shop at Costco.

�Costco�s a time vortex with Julie. You might as well plan on four hours,� said VanWinkle of Roseburg.

Willis said on one occasion they got caught in a downpour leaving the store.

�She doesn�t care,� Willis said. �She laughs everything off.�

Willis of Dixonville is one of 32 friends and family members trained to provide care for Brizendine. She�s the only one who is paid.

She spends three days a week with Brizendine � feeding her, brushing her teeth and hair, bathing her, helping with flexibility and doing laundry and other small chores. Together they�ll shop online for clothes.

Brizendine said Willis� shift ends at 2 p.m., although sometimes she stays until 4:30.

�We laugh and laugh and laugh, except no laughing when I eat �cause then I choke,� Brizendine said.

Friends and family of hers formed a support group in October 2005 � Share the Care � based on ideas and suggestions from a book bearing the same name.

�Share the Care� provides step-by-step guidelines on how to organize a group to care for someone who is seriously ill, essentially to divide, or share, the care.

�It was kind of a catalyst to getting organized. It really kind of gave us a guide to make it a reality,� said VanWinkle of her and others� desire to help Brizendine.

When Brizendine was first diagnosed, her co-workers from the OSU Extension Service and friends from 4-H rallied around her and wanted to help, but didn�t know what to do.

It was through the initiative of Turella Woods, Brizendine�s sister-in-law who lives in Portland, that Share the Care came about. After hearing about the book, she read it and passed it to VanWinkle and Miller, who developed a list of people they thought would want to help. They contacted each one and followed up with a meeting to organize the group and get it started.

�This was a way Rusty could still work and Julie could still have a social life,� said Miller of Roseburg.

VanWinkle said the group sends a message to the Brizendines and their family that they can accept help from others and that they�re not alone.

Brizendine said, �I feel like sometimes I�m not worthy of everyone, but I am blessed by all the friends �cause everyone, besides my family, have been associated with 4-H and my working at the extension office.�

To keep the system going, 16 co-captains were appointed who work in teams of two. Each pair of co-captains take turns coordinating care for several days each week, taking into account people�s interests and availability. They maintain the calendar and communicate with Brizendine through an online message board. Woods, though long distance, helps coordinate the care of Brizendine as a co-captain.

�If an emergency situation or a need for the week occurs, they are the point person for the week,� VanWinkle said.

They become responsible for finding people to provide the care needed or meeting the need themselves.

Group members provide care for Brizendine�s personal needs � haircuts, showers, bookkeeping, paying bills, doing light household chores, etc. � and several are trained in operating the van equipped for a wheelchair.

�I think I have the most wonderful friends ever, and the only thing, really, that has changed is I can�t do much by myself. I have to rely on my helpers,� Brizendine said. �I can�t eat without them. I guess I could put my face in the plate and try to lick it,� she said with a laugh.

And her desire to be around children is still being met. All the members of the group have kids, she said.

�They bring them to entertain me.�

Miller said she doesn�t view Sharing the Care as service at all. Instead, she describes it as an extension of their friendship and sees the care as something Brizendine would do for any of them.

�It�s just a way to spend time together,� Miller said.

Brizendine�s son Brent has taken the role of tech person, helping to maintain the Web site for Share the Care.

�He�s not real excited about helping his mom off the toilet, but he will do it,� Brizendine joked.

VanWinkle said there aren�t any special qualifications one has to have to participate.

�Prerequisite is Julie likes them,� Miller joked.

�We come from all different walks of life and it�s a real unity, the center of it being Julie.�

BELIEVER

When Brizendine was diagnosed, her husband said physicians gave her a one- to three-year life expectancy, which she has surpassed.

In response to the timeline, Brizendine said, �How about 15 to 20? No one to three for me.�

Willis said working with Brizendine has been a godsend.

�Julie has a strong Christian faith and she has inspired me in that respect.�

�Here she is with this total physical disability, and yet she�s such a good friend and counselor. I�m just amazed that she�s still unselfish.�

VanWinkle said that�s one thing about Brizendine � she�s never complained.

�Even on rough days, you wouldn�t know it. She always has a smile on her face, a bright light in her eyes and a good word for anybody.�

Brizendine said, �I decided that if I was gloom and doom no one would come see me. So, I said, I can be happy no matter what. I have my days, but most of the time I have a good time.�

She said she�ll eventually be paralyzed if ALS follows its usual course.

�But God�s going to cure me,� she said, ��cause I�ve been asking for his miracles.�

Brizendine looks forward to spending Christmas with her immediate and extended family members � all 26 of them.

By BLYTHE BERNHARD
The Orange County Register

Fitness mogul Augie Nieto has awarded a $500,000 grant for research and treatment of amyotrophic lateral sclerosis (ALS) at UC Irvine, the university announced today.

Nieto, of Corona del Mar, was diagnosed with the disorder also known as Lou Gehrig's disease in March 2005. His foundation, Augie's Quest, has raised more than $6.2 million for ALS research in partnership with the Muscular Dystrophy Association.

More than 5,600 Americans are diagnosed with ALS each year, usually between the ages of 40 and 70. The progressive, fatal disease attacks nerve cells and gradually causes complete paralysis.

The MDA ALS and Neuromuscular Diseases Center at UCI offers physical therapy and social services for patients in addition to research.

Nieto, 48, co-founded Lifecycle Inc. while attending Claremont McKenna College in the late 1970s. The company eventually became Life Fitness, one of the world's largest fitness-equipment makers.

World renowned Cambridge University theoretical physicist professor Stephen Hawking may have arrived in Israel last week to give lectures and promote British science, but he left learning something as well.

With its advanced work in both embryonic and adult stem cell research, and its proven track record with neurodegenerative diseases, Israel may become a leading world research center in amyotrophic lateral sclerosis (ALS), which Hawking has suffered from for more than 40 years. Founded in 2004, the Israel Association for ALS has galvanized some of the country's brightest research minds to probe the disease and develop new therapies to combat its devastating effects.

ALS, often referred to as "Lou Gehrig's disease," is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. In most cases, diagnosis leads to quadriplegia and death within two to five years from the onset of symptoms.

ALS is not as rare as some might think. It occurs in the United States as often as multiple sclerosis - about two people for every 100,000; there are about 30,000 cases in the US at any given time, with about 5,600 new cases diagnosed each year.

The famed UK physicist who penned the bestseller A Brief History of Time, didn't expect to live very long after he was diagnosed at 22. Today, at age 64 t, Hawking is the exception to ALS, rather than the rule. He can't use his vocal chords or his lips to talk, but communicates using an infra-red "blink switch" and a computer. Despite his handicap, he travels around the world lecturing on physics, and during his recent visit to Israel, Hawking met with both ALS sufferers and officials from the Israel Association for ALS.

"The people who suffer from ALS in Israel are creating a revolution," the Association's Tal Leder told ISRAEL21c. "Up until two years ago there was zero research in Israel because the people who suffered from ALS, well, they die so quickly."

Hawking learned about the Association's unusually speedy effort to rally a mass of Israeli scientists to study the disease - its progression, and possible therapies and cures. Without the restrictions that apply in the US to stem cell research, as well as its proven track record with neurodegenerative diseases, Israel could become a leading center for ALS research, Leder explained.

"I can't believe how quickly the group pulled everything together," says Miguel Weil, a researcher at Tel Aviv University's (TAU) department of cell research and immunology, who was the first to sign on to the initiative two years ago. "It's virtually unheard of in the scientific community. I have never seen anything like it."

Weil joins two other scientists at TAU and three from the Weizmann Institute who have recently received funding to carry out basic ALS research. Leder reports that all of the other major Israeli research centers - Hebrew University's Hadassah Hospital, the Technion and Ben Gurion University, will also be getting funding dedicated to ALS.

Weil's team at TAU is building a model using adult stem cells in order to study ALS nerve cells grown and expressed outside the body of an ALS sufferer. Once achieved, Weil hopes to be able to attack the ALS nerve cells with a battery of potential drugs. In the future, his research may lead to cell replacement therapy, which may be the closest alternative to a cure.

Through communicating with ALS patients on a weekly basis, Weil knows all too well about the tear-jerking stories of patients who are diagnosed with less than three years to live.

"If you compare Stephen Hawking's story to those of other people with ALS around the world, his is a positive one. Hawking is an incredible personality, with great strength and will," Weil told ISRAEL21c. He added that perhaps it was Hawking's example which has influenced the Israeli ALS sufferers who are "the ones moving forward this huge wagon of ideas and energies. I have never heard of such incredible efficiency."

The spearhead behind the Association was ALS sufferer David Cohen, an Israeli businessman who was diagnosed with ALS in 2003. Prior to diagnosis he enjoyed travelling to Sinai and practicing Tai Chi.

"David decided that for him maybe it is too late," says Leder, "but he wanted to establish a center for funding research in Israel."

Since its inception, Cohen has put forward $100 000 from his own pocket and has since raised more than $2 million. This amount is considered by insiders to be an unusual feat, as historically, ALS is not a popular disease for research due to the fact that scientists do not understand what causes it, and drug companies are hesitant to invest research funds because of the relatively small percentage of ALS sufferers worldwide.

Hawking and American baseball legend Lou Gehrig are the world's most famous ALS sufferers. The disease was first brought to light in America and to the international community when Gehrig suddenly retired from baseball in 1939, after being diagnosed with the disease. Other famous Americans whose lives were cut short from ALS includes Hall of Fame pitcher Jim "Catfish" Hunter, Senator Jacob Javits, creator of Sesame Street Jon Stone, and US Army General Maxwell Taylor.

The debilitating disease did not prevent Hawking from implementing a schedule for his fourth visit to Israel that would have exhausted a completely healthy person. Arranged by the British Embassy in Tel Aviv, Hawking was escorted by British Ambassador Tom Phillips throughout a busy week that encompassed meetings with aspiring young scientists at Jerusalem's Bloomfield Science Museum, a visit with Prime Minister Ehud Olmert; and pre-recorded lectures at Hebrew University, the Weizmann, and TAU, among other stops.

With rock star appeal, Hawking attracted Israeli scientists, young students, politicians and ALS sufferers who came to hear him expound on the physics of black holes, the fate of our universe, and the future of the Middle East. But most of all, participants said they came to witness a miracle: the triumph of the human spirit in the face of an insidious neurological disease.

Since it's difficult for Hawking to give interviews, his personal assistant Judith Croasdell, who travels with Hawking around the world, was pleased to speak on his behalf. She told ISRAEL21c that Hawking came to Israel because "the science has always been a center of excellence."

Let's hope for Hawking's sake and other ALS sufferers around the world that Israel can add a piece to the complicated puzzle of this disease.