by Annie Kennedy
Director, MDA ALS Division

Change. Gratitude. Family. Tradition. Feasts. Resolutions.
These are words we frequently use as we share the holidays with friends and loved ones. Of course there are other words also closely associated with the holidays: presents, sales, stress, dysfunction, calories, houseguests, influenza, crowds, travel…. But, in the spirit of joy and celebration, let’s focus on the positive…

Our behaviors and priorities this time of year often reflect a shift in focus from work and career pursuits to family and community needs. We take less for granted. We seek opportunities to grant loved ones’ wishes and express our appreciation for friends. We take well-deserved time off from work and bake cookies, decorate our homes, wrap presents, write letters and volunteer in the community. We reflect on the past year and resolve to do more next year. We make lists.

But, when was the last time you actually made a wish list? Let’s be honest; none of us are sure how we accomplish all that we do during the holidays. And, if you are a family caregiver, you are probably already in awe of all you manage to accomplish the other 10 months of the year. But, the reality is that none of us can do it alone. If we could, there would be no such thing as a caregiver. And, as caregivers know, there’s no greater privilege than being a support to someone we love. So, don’t we owe it to our friends and family to give them the opportunity to support us?

Annie Kennedy

November is National Family Caregivers Appreciation Month. But, more than that, these are the months we set aside to do more for one another, spend more time with one another, and show gratitude for one another. In this same spirit of giving, I have a two-part challenge for you…

Part One — Within the next 24 hours, take 10 minutes to sit and make a wish list. Include all items that you wish “magic elves” could take care of for you — routine items such as writing checks, addressing holiday cards, shopping, hanging decorations, dusting, baking, or driving carpool; or physical needs such as time for a nap, a massage, an afternoon with friends, or a few hours of respite. It’s your list, have fun with it. Okay, that was the easy part…

Part Two — Post the list on your refrigerator so those “magic elves” can see it, or even family and friends. You never know what may happen. If only one of your wishes is granted, that may afford you a few more minutes you can spend with the people you love.

On behalf of everyone at MDA, I wish you and your family a holiday season filled with peace, joy, love, family and tradition. Happy holidays!

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In most people with amyotrophic lateral sclerosis (ALS), respiratory muscles deteriorate as the disease progresses, because the nerve cells that control these muscles are lost. This deterioration leads to decreased air exchange. The results usually include shortness of breath when the person is lying down or with exertion, and interference with sleep — all signs of respiratory distress.

Regular measurements of respiratory function are crucial for people with ALS.

Another effect of weak intercostal muscles in ALS is a decrease in the person’s ability to cough; infections can result. Manual or mechanical assisted coughing is usually recommended.

In addition, the nerves and muscles that control swallowing, as well as routing of food and liquids into the stomach and air into the lungs, are often affected. This can lead to inhaling of food or liquids, with resulting airway obstruction or infection. This type of problem may be solved by inserting a feeding (gastrostomy) tube so that the person isn’t eating and drinking by mouth.

In 1999, the American Academy of Neurology published guidelines for physicians providing respiratory care in ALS. People with ALS can follow these recommendations and discuss them with their doctors.

• Watch for and report signs of respiratory muscle loss and decreased air exchange.
• Undergo frequent measurements of respiratory function.
• Begin noninvasive ventilation to relieve symptoms and to some extent prolong survival.
• Begin invasive (tracheostomy-delivered) ventilation if long-term survival is the goal, taking into account the   burdens and benefits of this decision.

The guidelines also advise doctors that the ALS patient maintains the right to refuse or withdraw treatment, including mechanical ventilation. While ventilation is being withdrawn, doctors should provide access to adequate pain medications (including morphine) and anti-anxiety drugs.

Editor's Note: MDA has recently published “Breathe Easy,” a new booklet on respiratory care that includes this excerpt. To obtain a copy,  in English or Spanish, contact your local MDA office.

The Working Caregiver Dilemma

by Christina Medvescek

Caring for a loved one with ALS and simultaneously keeping up on the job can make you feel as if you’re being ripped apart.

There are obvious benefits to working while caregiving, like income and health insurance, and less obvious benefits, like social contact and getting a small mental break from caregiving responsibilities. Employers benefit from retaining skilled and trained workers.

But there are obvious downsides. Working takes a physical and emotional toll on caregivers. And a recent study by the National Alliance for Caregiving found that working caregivers cost employers about $34 billion a year, due to absenteeism, lost productivity and having to replace workers.

As working caregivers become more numerous, businesses are becoming more adaptable. Here are some strategies that both employers and caregiver-employees have found useful:

Little Steps

Although she can’t prove it, Darcy Alber of Florissant, Mo., believes she was fired from her job of seven years due to the amount of time she took off to care for her husband Kenny, who received an ALS diagnosis in 2003.  Luckily, Alber was soon hired by the company that provides Kenny’s durable medical equipment.

“Obviously they knew my situation when they hired me,” said Alber, who also has two small children.
“They’ve been so kind and patient. They allow me to work a minimum of 32 hours per week to keep me full-time, so I can keep my benefits. I can work up to 40 hours per week if my personal life allows for that, which is what we need financially, but it doesn’t happen very often.”

Educating employers about ALS and the kind of care required can make them more open to flexing your hours, Alber said.

Some other strategies for building understanding and support include:

•  Make a clear distinction between work and caregiving. Save personal phone calls until a break or lunch, unless it’s an emergency. This goes a long way toward creating goodwill among employers and coworkers.
•  When requesting accommodations, look for those with the least impact on productivity and other staff.
•  Show appreciation toward co-workers who may be picking up the slack.  Bring in bagels, have a backyard barbeque or simply write thank-you notes.
•  Find a work buddy — someone else in a caregiving situation — and share support and tips.

Flexibility

Flexibility is one of the best gifts an employer can give a working caregiver, said Donna Wagner, director of the Center for Productive Aging at Towson University, Md., and an expert on employed caregivers. Studies suggest that flextime improves job satisfaction and performance, and decreases lateness and turnover.

How do companies become flexible? “In almost all cases, if someone in the executive ranks has had personal experience caring for a loved one … the atmosphere is friendlier,” said Wagner.

This was true for Robey Taylor of Wildwood, Mo., when he was caring for his wife, Anita, who had ALS. (Anita died in August.) The president of Taylor’s company had lost a son in a car accident. “She understood family problems,” said Taylor. “She said do whatever you need to do.”

Technology also makes flexibility easier. When Anita’s needs caused Taylor to rearrange his work hours, he completed correspondence at home and e-mailed it to the office, where it was typed and ready to be signed when he arrived.

“E-mail networking and cell phones helped a great deal,” said Taylor.  “Guys could call me at home [to ask questions] and half the time they didn’t even realize I wasn’t in the office.”

Use What’s Available

Smaller businesses may be more flexible because of their size, while larger businesses may offer two formal resources: Employee Assistance Programs (EAPs) and Family and Medical Leave Act (FMLA) leave.

EAPs are meant for those coping with a crisis like ALS. EAP counselors can identify options, provide information on community resources and long-term planning, and even help you talk to your boss about your accommodation needs.

Anita Taylor’s company offered free financial counseling with a specialist experienced in bereavement. “He asked about wills, living wills, life insurance,” said Taylor. “That was a big help. I’m sure other companies do it, but people don’t know about it.”

FMLA leave is available to employees at companies with at least 50 workers. You must have worked 1,250 hours in the past year. FMLA provides up to 12 weeks of unpaid leave and guarantees the continuation of benefits and comparable employment. Although FMLA leave must be scheduled in advance and documentation may be required, it can be used very flexibly, from big chunks to hourly increments (“intermittent leave”). 

California now offers up to six weeks’ partial pay for caregiving leave. Eight other states are considering some form of paid leave for caregivers: Illinois, Washington, Hawaii, Minnesota, Massachusetts, New Jersey, New York and Pennsylvania.

The key to mending the work-caregiving split is to identify and ask for the help you need. There may be limits to what an employer can do, said Wagner, but “feeling supported at work goes a long way to empowering people and making the day a little easier.”

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by Margaret Wahl

Human Stem Cells Benefit Rats With ALS

MDA grantee Vassilis Koliatsos at Johns Hopkins University in Baltimore recently coordinated a team of scientists who saw significant benefit when they transplanted human stem cells into the spinal cords of rats with ALS.

In the Oct. 15 issue of Transplantation, the investigators describe how they grafted human fetal spinal cord stem cells into the lumbar spinal cords of rats with the SOD1 genetic form of ALS and measured their effects. The rats received the immunosuppressive drug FK506 (tacrolimus) to prevent rejection of the human cells.

The cells showed extensive maturation into neurons, which then made contact with existing nerve cells.
They produced two neurotrophic (nerve-nourishing) proteins, glial cell-derived neurotrophic factor (GDNF) and brain-derived neurotrophic factor (BDNF), as mature neurons normally do.

The grafts delayed the onset and progression of the ALS-like disease and extended the life span of the rats by more than 10 days, even though the cells were inserted only into the lumbar area.

The authors say the benefits probably result from a combination of localized new cell formation and the production of mobile neurotrophic factors.

Genome-Wide Scans Provide Scientists First Clues

Scientists from the Phoenix-based Translational Genomics Research Institute (TGen, www.tgen.org) visited MDA National Headquarters in Tucson, Ariz., in September to present the first clues from a scan of the genomes (complete sets of DNA) of approximately 1,000 people with and 1,000 people without ALS. The project, funded by MDA through Augie’s Quest, used new technology to detect minute differences between the DNA of ALS-affected and unaffected subjects. Many were found, although further data are needed to interpret them. More details are expected in December. Left to right: Travis Dunckley of TGen; Robert Bowser, director of the Center for ALS Research at the University of Pittsburgh; Dietrich Stephan, deputy director of TGen; and Robert Miller, director of the MDA/ALS Center at California Pacific Medical Center in San Francisco.

Trial of Anti-Cramping Drug Seeks Patients

A 20-person trial of the drug levetiracetam, now used to treat epilepsy, to see whether it can relieve cramps and spasticity or slow disease progression in ALS, seeks a few more participants.

Contact Karen Grace or Deb Heydt at the Duke University MDA/ALS Center in Durham, N.C.,
at (919) 668-2844.

Device Allows Thought Control of Computer

A 37-year-old man with ALS who’s unable to move or talk has been able to control a computer cursor and communication software with his thoughts alone, using a device implanted in the movement control area of his brain, said investigators from Massachusetts General Hospital in Boston and Cyberkinetics Neurotechnology Systems of Foxborough, Mass., at an October conference of the Society for Neuroscience.

BrainGate, a product of Cyberkinetics Neurotechnology, consists of a silicon chip sensor embedded into the movement center (motor cortex) of the brain, and external processors that convert brain signals into computer output. The signals are generated when the user imagines what he or she wants to do.

The company is seeking patients with ALS who live within a two-hour drive of Boston for a continuing study of BrainGate. Click on Clinical Trials from the company’s Web site at www.cyberkineticsinc.com, or contact neuroscientist Leigh Hochberg at (617) 726-4218 or lhochberg@partners.org.

Studies Probe ALS Risk, Severity

A study conducted at the MDA/ALS Center at Massachusetts General Hospital in Boston between 1998 and 2002 compared 95 people with ALS with 106 without the disease to identify factors that may influence susceptibility to ALS and its rate of progression after it develops.

Robert Brown, who directs the center, and Merit Cudkowicz, who treats patients there and has had MDA funding to conduct several ALS studies, were investigators on this project, which was funded in part by MDA and published in the September issue of Amyotrophic Lateral Sclerosis.

ALS patients were more likely than the unaffected (control) group to report exposures to pesticides and lead; to report an average of 14.7 years of education, compared with 16.1 in the control group; not to have served in the military (contradicting other findings showing military service to be an ALS risk factor); and to have stopped smoking slightly later than control group subjects.

Factors associated with a faster rate of disease progression were bulbar (mouth and throat) muscle onset of the disease; a shorter time from onset of symptoms to diagnosis; and, confusingly, military service.

The study’s authors note as potential sources of error small sample size and possible bias in the selection of study participants (with veterans more likely to be cared for at VA hospitals) or in the subjects’ recall of exposures.

Lorene Nelson, chief of the Division of Epidemiology at Stanford (Calif.) University School of Medicine, conducted a study in Washington state from 1990 to 1994 in which cigarette smoking and dietary fat intake were identified as associated with ALS development. That study included 161 people with ALS and 321 without the disease.

by Kathy Wechsler

Several MDA/ALS centers include nurse practitioners (NPs) as part of a health care team. They’re registered nurses with advanced degrees and training who manage their patients’ ongoing care once they receive a diagnosis of ALS from the neurologist.

NPs execute the care of patients in a variety of ways. It depends on how the practice is run and the NP rules and regulations of the state.

Johns Hopkins University

For example, once patients receive a diagnosis of ALS at the MDA/ALS Center at Johns Hopkins University in Baltimore, they’re referred to Lora Clawson, who’s been an NP there for seven years, to manage their ongoing clinical care. Clawson consults with the physicians but sees patients after they’ve seen the neurologist or primary care physician.  They can also choose to see only Clawson.

NP Rebecca Molczan monitors the lung function of George Michell as he performs a forced vital capacity test.

“I tell patients, ‘I’m not here to replace your physician. I’m here to augment your physician,’” she says.

As an NP, Clawson helps patients who’ve recently received an ALS diagnosis to understand the disease. She builds hope by discussing clinical trials, multidisciplinary care and resources, and is available by telephone if patients have questions or concerns. She writes prescriptions for medication and orders for X-rays, interprets laboratory results, helps patients get the equipment they need and refers them to outside individuals and agencies.

In the multidisciplinary ALS clinic, Clawson coordinates with other members of the health care team, including the physical and occupational therapists, nutritionist, pulmonologist, gastroenterologist, orthotist and the durable medical equipment vendor.
 
“I love taking care of patients,” says Clawson, who’s also an assistant professor in the School of Medicine and a clinical instructor in the School of Nursing at Johns Hopkins. “That’s why I got into nursing many years ago and why I choose to stay in nursing today.”

Massachusetts General Hospital

By contrast, Matt Bellanich, an NP at the MDA/ALS Center at Massachusetts General Hospital in Boston, shares ALS patients with the physician. Patients alternate visits with the neurologist and Bellanich in addition to visits with other clinicians such as the physical therapist, speech pathologist and respiratory therapist. 

Besides helping patients with both nursing and medical issues, Bellanich is involved in a number of clinical trials, writing the protocols to ensure involved patients will be safe during the trials. He also does a lot of e-mailing and phone communication with patients and their family members. 

“I really encourage patients and family members to call me if they have a concern or they have a worry, if they have a problem,” says Bellanich, who’s been an NP for 20 years, two of which have been working with ALS patients. “I don’t want them sitting on it and not contacting us and just getting anxious when maybe there’s a pretty easy solution. If it’s a more complex issue, then the patient needs to be seen sooner.”

Bellanich also sees patients in their homes, because as the disease progresses, it sometimes becomes difficult for patients to come to the clinic. Seeing patients at home allows him to evaluate them medically as well as to deal with their ongoing nursing and social issues in the home setting. When patients are in hospice care, Bellanich acts as a consultant to the hospice nurses. He also travels to groups involved with home care and hospices and helps them better understand ALS and how symptoms are treated.

University of Pittsburgh Medical Center

Rebecca Molczan, who works as an NP at the MDA/ALS Center at the University of Pittsburgh Medical Center, serves as the clinic coordinator and sees new patients with the neurologist.

“My role is that after [the neurologist and patient] determine a plan, I make sure that the plan is followed up,” says Molczan, who’s coordinataed the MDA clinic since 1991 and has been an NP for six years. “For example, if any outside testing is needed, I make sure that those things are done and follow up with the patients with results and do any outside referrals that are necessary.”

There to answer any questions, both during and between visits, Molczan cites patient education as a large part of her job. While providing support, she educates patients and their families about the disease process and things they can do to improve their quality of life.

During clinic visits, Molczan evaluates patients’ respiratory function. She also assists in research projects involving ALS patients and serves on the data safety management board.

The Personal Touch

Matt Bellanich says that because of NPs’ backgrounds in nursing, patients choose to go to them in many different settings.

“It’s a little bit different style of medical care in that I think nurses are a little more based in the social sciences, in family dynamics and the care aspect of taking care of an ALS patient,” says Clawson. “A lot of times some specialists, in particular physicians, sometimes approach disease from a little bit more of a technical, diagnostic or procedure-oriented orientation.”

Patients value their relationships with NPs because they trust them. When seeing an NP, the relationship is about the patient — not just the disease. NPs try to integrate patients’ health problems with other issues involved in living with ALS.

Respite Care Benefits Both Patient and Caregiver

by Christina Medvescek

Linda Parr had a hard time convincing her husband and caregiver Larry to take a little break and let someone provide respite care for her. Larry worried Linda wouldn’t get the quality of care he could provide. If she hadn’t pushed for it, he probably wouldn’t have done it. 

But Linda knew that using respite care was important to both of them. “When Larry was gone he was able to have a meal without having to help me. He had a good night’s sleep without my waking him up. It helped to give him more rest. Caregivers really need to get rest and relaxation.”

Anita and Robey Taylor

Respite had benefits for Linda as well, even though the care wasn’t equal to Larry’s loving care. “I hate that Larry has to take care of me — it’s hard to accept help like that,” said the former governmental benefits manager, 57, of Englewood, Colo.  “It made me feel good to say, ‘It’s covered. You don’t have to worry. Go.’

“The main message for me is it’s very healthy for both caregiver and patient to have respite care, even if it’s for a short amount of time. It’s healthy for your relationship and for overall mental health.”

Here are several ways — formal and informal — to get the short break called  “respite.”

In-Home Respite Care

Call On Friends and Family: When his wife Anita received an ALS diagnosis, Robey Taylor wrote a letter explaining the situation and inviting friends and family to visit or take her out.  “I was…well, some would say ‘aggressive’ about asking for help.  I don’t think most people are aggressive enough,” said Taylor, of Wildwood, Mo. His wife Anita died this August. “We pretty much scheduled someone to come every day.

People are willing to help but they just don’t know what to do.”

Taylor would specifically ask people to come so he could take a break, like going to a ballgame with his son or out for a drink with friends.  “They would say ‘sure, I can do that’ The key is, you have to ask.”

This informal respite also gave Anita someone new to be with and kept her active and socially involved, Taylor said.

Use Friends, Family and Paid Caregivers: For overnight respite care, some prefer a combination of caregivers. For their first respite experience, the Parrs asked family to stay with Linda and paid a certified nurse’s aide to help with “the physical part.”  (The second time, Linda spent a couple of nights at a “clean and pleasant” elder care home staffed by the same aide.)

In some communities, nonprofit, volunteer or religious organizations offer grants to pay for respite caregivers to come to your home. Check with your local MDA office, agency on aging and  independent living center for more information.

Check Medicaid: If you receive Medicaid assistance, many states will pay for respite caregivers. Medicaid personal care benefits also can be used for a brief respite.

Out-of-Home Respite

Palliative Care (PC): Although not yet widely available, this is an emerging and fast-growing area of health care. PC programs integrate medical, spiritual, emotional and social services for people with terminal illnesses.

To use it, you must find a hospital or hospice with a PC program, and you must have Medicare coverage, as most private insurance doesn’t cover it. (Medicare coverage is automatic if you’re receiving Social Security Disability Income.)  PC services are billed like other Medicare services.

Short-term PC respite programs usually are offered at hospitals, but more and more hospices are adding PC to their menu of services, says John Radulovic, spokesperson for the National Hospice and Palliative Care Organization.  To use PC respite, it’s not necessary to be enrolled in hospice, to be close to death, or to renounce lifesaving treatments. However, your doctor must refer you.

Hospice: Despite its association with imminent death, hospice isn’t just for dying.

Linda Parr was admitted to the hospice program after bringing up the subject to her doctor, who offered to make the contacts.

“Hospice is really a godsend. They provide so many services, more than what people may realize. It’s not just the last two weeks of your life,” she said. “I know some resist it because of what it means, but it’s been a very positive thing.”

In addition to regular in-home patient care and other services, hospice benefits include short-term respite stays at a hospice center or nursing home. Check with your local MDA office for recommendations of appropriate local hospices or nursing homes.

Peace of Mind
When Linda finally convinced Larry to take a respite break, he visited an artist friend and helped him with his art show.

EQUIPMENT CORNER
Accessing & Acquiring Assistive Technology
Some options to make funding AT purchases easier

by Alyssa Quintero

in the world of assistive technology (AT), communication devices, mobility aids, adapted vehicles and home modifications are all costly, and Medicare, Medicaid and private insurance don’t always cover their purchase.

Here are some assistive technology funding resources that can help ease the financial burden.

State Assistive Technology Act Programs

If you need AT funding assistance, start by contacting your state’s federally funded Assistive Technology Act program. These programs, which operate in all states, work to improve access to AT products and services.

State AT programs are the experts at putting people in touch with local AT resources and providing information about funding sources. They also offer loan and equipment exchange programs.

“Your first call should be to your state AT program because they can serve as that first line of contact for people looking for AT information,” said Nell Bailey, project director for RESNA’s (Rehabilitation, Engineering & Assistive Technology Society of North America) Technical Assistance Project.

“The state AT projects have the greatest, broadest knowledge of assistive technology products, devices and services,” said John Moore, assistant director of the Texas Technology Access Program. “They know where all the funding sources are in the state and the suppliers of assistive technology.”

Short-Term Equipment Loan Programs

Through the State AT Act Projects, short-term equipment loan programs enable people with disabilities to try a device, at little or no cost, before they purchase it on their own or while they’re attempting to secure funding.

Equipment loan programs also provide replacement devices to people with disabilities when their own devices are on order or being repaired. These loans can be extended on a case-by-case basis.

Loan equipment generally includes: AAC devices, computer access devices/software, wheelchairs, environmental control units (ECUs), adapted equipment for the workplace, durable medical equipment and personal care aids.

Alternative Financing Programs

A little-known funding option is the Alternative Financing Program (AFP), a federal/state loan program available in 33 states that grants low-interest loans to people with disabilities, their parents, relatives or advocates in order to purchase AT equipment or services.

People who don’t qualify for traditional bank loans may find AFPs more receptive to their applications. They make allowances for poor credit, especially if it’s related to a person’s disability.

“Loan financing programs have proven to be an alternative of great potential in relieving this burden of cost,” said Joey Wallace, a public policy analyst and executive director of Virginia’s Assistive Technology Loan Fund Authority (ATLFA).

The loans are commonly us+ed to purchase big-ticket items, including adaptive vehicles, home modifications, computer hardware/software, communication devices, and mobility equipment (scooters and power or manual wheelchairs).

In the event a person with ALS passes before the loan’s paid in full, “the family is still responsible for paying the loan, but we understand this, and we’ll try to work with the family,” said Sue Castles, loan program coordinator for the Illinois TechConnect Program.

“We’re [AFP] more flexible than a bank because we’re not a bank. We’re still a human services agency.”

Castles explained that five years is a typical loan term for most devices, including AAC devices. A person could, however, finance a new adapted vehicle for up to 10 years.

Many AFPs  ask people “what they feel like they can afford to pay.” She added that the Illinois TechConnect program would work with a person who receives his or her income from SSI or SSDI, but that those loans tend to be smaller.

More Help

MDA assists with the purchase of communication devices prescribed by MDA clinic physicians.

Your local independent living center also has valuable information about AT funding sources in your area.And, if you’re still working, check with your state Department of Vocational Rehabilitation to determine what types of AT qualify for coverage in order to maintain employment.

For example, Wayne Phillips of Santa Barbara, Calif., received funding assistance from the California Department of Rehabilitation Services. Phillips, 47, who received a diagnosis of ALS in 1989, continued to work as a software engineer after vocational rehab paid for his adaptive computer equipment.

And, if you’re a veteran with ALS, the Veterans Administration may provide funding for AT devices.
Furthermore, if you’re looking to purchase used equipment at a lower cost, one option is ATmatch.com. It’s a marketplace where donors and sellers can locate buyers for a wide range of AT and durable medical products.

People can list a product, auction it or sell it for a set price. Currently, 18 State AT Act Projects have signed on as partners in the project, including the Texas Technology Access Program. Anyone can browse the site, and registration is free.

’Wings’ Takes Flight, Raises $1 Million

by Alyssa Quintero

The sixth annual Wings Over Wall Street gala took flight Sept. 28, raising an impressive $1,010,213 to benefit MDA’s ALS research program and to increase ALS awareness.

Some 800 attendees, including celebrities and New York financial leaders, gathered at the New York Marriott Marquis in Times Square. Lisa Marie Utasi, director and senior equity trader at ClearBridge Advisors, and Mary McDermott-Holland, senior vice president of Trading at Franklin Portfolio Associates, were the event’s co-chairs.

Wings co-chair Lisa Marie Utasi, Spirit Award recipient Bill Collier, Wings co-founder Warren Schiffer, Spirit Award recipient Claire Collier and Wings co-chair Mary McDermott-Holland

Liz Claman, co-anchor of CNBC’s “Morning Call” and anchor of “Cover to Cover,” and MSNBC anchor Rita Cosby, host of “Rita Cosby: Live and Direct,” hosted the event, which featured a VIP cocktail reception, live and silent auctions, and the raffle of a 2007 Mazda MX-5 Miata.

Three awards also were given for outstanding contributions to the quest to cure ALS. 

Neurologist Merit Cudkowicz, an MDA research grantee at Massachusetts General Hospital in Boston, received the Diamond Award, named for the event’s co-founder, Toni Diamond, a United Airlines flight attendant who died of ALS in 2004.

Bill and Claire Collier of Stamford, Conn., received the Spirit Award for their commitment to raising ALS awareness and funds for ALS research. Claire, a mother of three, received a diagnosis of ALS in 2003.
Tom Rice of West Windsor, N.J., managing director in equities for the Credit Suisse Group, was given the Michael P. Beier Award, which honors a person who motivates others to help find a cure for ALS. Beier, a former Wings event chairman, died of ALS in 2003.

Some of the auction items up for bid included a round of golf with former New York Mayor Rudy Giuliani, lunch with Walter Cronkite, two round-trip tickets from New York to London, a guest appearance on the TV drama series “Forensic Files,” tickets to New York Yankees games, and a VIP tour for four people of CNBC’s global headquarters and studio.

Since 2001, the event has raised more than $6 million for ALS research. The funds will benefit the research teams of Hiroshi Mitsumoto, co-director of the Eleanor and Lou Gehrig MDA/ALS Research Center at Columbia University in New York, and Jeffrey Rothstein, director of the MDA/ALS Center at Johns Hopkins University in Baltimore.

Inaugural Event Raises Hope, Funds for Augie’s Quest

by Alyssa Quintero

On Sept. 30, some 800 guests gathered for the first annual Tradition of Hope gala at the Hyatt Regency Century Plaza in Los Angeles. The event raised over $1.4 million to benefit Augie’s Quest to Cure ALS, making it California’s largest-ever fund-raising event to benefit MDA.

Hosted by “Entertainment Tonight” anchor Jann Carl, who is also an MDA national vice president, the event honored Edmund, John and Peter Shea of the J.F. Shea Co. for their outstanding contributions to the Association.

John Shea, Peter Shea, Augie Nieto and Edmund Shea

The Sheas received the first Robert Ross Founder’s Award, named for MDA’s longtime chief executive who died in June.

Founded in 1881, the J.F. Shea Co. is one of the largest privately owned businesses in America. The company was involved with the construction of such American icons as the Golden Gate Bridge and Hoover Dam.

The evening’s festivities included live and silent auctions, a cocktail reception, live entertainment and dancing.

Top auction items included trips to Hawaii, golf with PGA Tour member Tom Lehman, and a VIP tour of David Copperfield’s personal magic museum.

Started by fitness pioneer Augie Nieto, Augie’s Quest has raised more than $6 million to benefit the ALS Division’s research program.

Nieto is co-founder and former president of Life Fitness, and chairman of Octane Fitness. He and his wife, Lynne, serve as co-chairpersons of MDA’s ALS Division. Nieto received a diagnosis of ALS in March 2005.