Sam and Jo-Ann Goldstein of St. Louis have learned a lot about living with ALS since he received his diagnosis. They continue to share their hard-won wisdom in this third article in a series.

by Sam and Jo-Ann Goldstein

By the time you read this article, I’ll have had the one-year anniversary of my diagnosis. In this year, I’ve gone from walking with a cane, driving myself and being relatively self-sufficient, to being in a power wheelchair, having lost almost completely the use of one arm and being able to take only a few steps with the aid of a walker.

But, I still have no bulbar involvement, so I’m able to swallow, breathe and speak, which means that people still have to put up with my repertoire of old and corny jokes.

It seems as if this year has both flown by, and at times, taken forever to pass. I can’t believe that in the last year I’ve watched my infant grandson, Aiden Goldstein, grow into a walking, smiling toddler and my older grandson, David Fox, become a nonstop chatterbox. By contrast, there are days when the darkest of depressions hit me when I least expect it. I still can’t believe all the changes that my body has gone through in just one year’s time.

A World of Devices

In my last article I was talking about selecting a power wheelchair. After talking with people, asking for opinions on the message board and at our MDA support group and trying out three different brands of chairs in my home, I decided on a Permobil C500 Corpus II because of its durability and ease of service and because it has a seat elevator.

Sam Goldstein at his MDA/ALS Center getting measured to fit a power wheelchair from the MDA loan closet. (Left to right) Physical therapist Jeanine Schierbecker, Sam, physical therapist Betsy Malkus and Debbie King from the St. Louis MDA office.

The process of measuring and ordering takes several months and must be done well in advance of needing to use it. The MDA loan closet had a Permobil chair available that was close to my measurements, and I used it for the last several months until mine was delivered in early August.

In May, MDA in St. Louis had its annual ALS Awareness Month Resource Expo, where we picked up tons of wonderful and useful information. We saw accessible vans with ramps, a transfer demonstration, computer devices, and remodelers for home accessibility. Being a very physical person my whole life, I’ve found it difficult to ask for help, particularly from my very small wife. Seeing the Hoyer lift demonstrated, and the ease with which it could throw around my 250-pound bulk made me a lot more confident and secure with everyday transfers.

It was time to get a lift since we had been calling 911 on a fairly regular basis. Once again, the MDA loan closet came to the rescue with a fabulous electric/hydraulic Invacare lift and sling.

The next step was getting a van. This was crucial for moving me away from the house in my power wheelchair. The combination of a ramp-equipped van, power wheelchair and ramps at the house has now given me a sense of freedom that I have not had for the last six months. Even though I still depend on someone to drive me, once I get where I’m going I can take care of myself.

Ryan Lander won a sponsored lemonade stand to benefit MDA. Front and center, David Fox; behind him, Phil Fox, who has FSH muscular dystrophy; left to right, Quinn Fox, Samantha Fox, Ryan, Corey Fox; and Jordan Lander holding Conner Lander. The kids raised $1,100.

I once again had a short hospital stay. From my last hospital visit I’d learned that I needed to request a handicapped-accessible room. I was put on the orthopedic floor, and my room even had a ceiling lift. The nurses and aides were all totally used to dealing with patients who could not move on their own. I strongly recommend for any hospital visit that if you can’t move on your own, you explain to hospital staff your limitations before being checked into a room and that everyone knows and understands how to deal with them.

Today and Tomorrow

One of the fun things that’s happened was our grandson’s cousin, Ryan Lander, 8, winning an essay contest in June. Radio station KSD-FM agreed to sponsor a lemonade stand (lemonade and cups supplied by the station) for the winning essayist. Ryan wrote an essay promising all the proceeds would go to the Jerry Lewis MDA Labor Day Telethon because his grandpa, Phil Fox, has facioscapulohumeral muscular dystrophy and his cousin, David’s grandpa, Sam, has ALS.

So on a warm Saturday, all the cousins gathered to sell lemonade and get donations from friends and passing cars. They will proudly present a check for $1,100 at the upcoming Telethon in St. Louis! Unfortunately, you don’t see me in the pictures with Phil Fox and the grandchildren because it was during the time that I was without transportation.

At the top of my list of concerns for our future is the stem cell initiative on the Missouri ballot this November. With the current research being done and breakthroughs seemingly around the corner, we all need to urge all of our senators and representatives across party lines to support embryonic stem cell research. I am doing all I can to get the word out and people to the polls in November.

Starting my second year  with ALS, not knowing what’s ahead, I guess we’ll just see what happens and we’ll take the journey together. As always, I welcome your comments —fhornsam@charter.net.

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Antisense Reduces SOD1, Prolongs Survival in Rats

Researchers at several California institutions have shown that a compound that blocks the production of abnormal SOD1, the cause of 1 percent to 2 percent of all ALS cases, extends survival in rats with the disease and that the compound is a good candidate for near-future testing in patients.

Don Cleveland, Timothy Miller and Richard Smith of the University of California-San Diego (UCSD) and colleagues, in partnership with Isis Pharmaceuticals, announced their findings online July 27 in the Journal of Clinical Investigation.

After developing an SOD1 “antisense” compound, which targets the genetic instructions for the SOD1 protein and interferes with protein synthesis, they administered it to rats bred with multiple copies of abnormal SOD1 genes and therefore destined to develop ALS. Humans have only one copy of the abnormal SOD1 gene. 

The rats survived an average of 132 days if they received the antisense treatment, compared with 122 days if they didn’t, a survival difference of 10 days, or 8 percent.

Miller, a UCSD neurologist and neuroscientist, and co-first author on the JCI study, notes that when the researchers looked at how long the rats survived after the onset of ALS symptoms, at about day 95, the treated rodents lived on average another 37 days, compared to 27 in the untreated group. That 10-day, 37 percent difference, he says, means the disease slowed significantly after onset with the antisense treatment.

The beginning stage of disease in the animals wasn’t affected, since the drug requires about 30 days to start decreasing SOD1, and treatment was started 30 days before the animals typically get ALS.  The resesarchers haven’t yet tested whether earlier treatment of the animals increases the survival benefit.

Miller says that if all the right pieces fall into place, including assurance of safety through further animal testing, and approval from the Food and Drug Administration, his group plans to test SOD1 antisense therapy in people with SOD1-related ALS. He estimates there are 300 to 400 SOD1 ALS patients in the United States. 

The rats were given antisense directly into the cerebral spinal fluid (CSF) that circulates throughout the brain and spinal cord.  For the human trial, the investigators plan to infuse it into the CSF in the lumbar spinal cord area, via an implantable pump. If unwanted effects occur, the treatment can easily be stopped.

Treating Non-Neuronal Cells May Be Good Option in ALS

Although motor neurons are the main site of damage in ALS, recent research has shown that other cell types in the nervous system can exacerbate or diminish disease severity and therefore might be good targets for therapy.

In a study published June 2 in the journal Science, Don Cleveland at the University of California-San
Diego and colleagues showed that reducing levels of ALS-causing, abnormal SOD1 protein only in microglia, cells through which immune responses are mounted in the nervous system, significantly slowed the later phase of the ALS disease process in mice even when the abnormal protein levels remained high in the motor neurons.

Brain-Computer Interfaces: Is Deeper Better?

On July 13, in the journal Nature, a team of researchers at Massachusetts General Hospital in Boston, Brown University in Providence, R.I., and Cybernetics Neurotechnology Systems in Foxborough, Mass., announced a major victory for their BrainGate technology: A 25-year-old man with a high spinal cord injury, almost completely paralyzed since 2001, was able to open e-mail, operate a television, and use a robotic arm and hand.

The device, known as a “brain-computer interface,” or BCI, guides movement by picking up nerve cell activity patterns in the motor cortex, the part of the brain where movement signals originate. It’s being tested in pilot trials in people with spinal cord injuries, ALS and other conditions.

Unlike other systems, the BrainGate uses electrodes that are implanted in the motor cortex, rather than attached to the head’s surface.

When a computer mouse receives signals from the cortex, it interprets them as if the person were moving the mouse with his hand. “The signal available in the cortex is a good representation of what you want to do with your hand,” says John Donoghue, a professor in the Department of Neuroscience at Brown University and the founder and chief scientific officer of Cyberkinetics Neurotechnology Systems. “If you were moving a mouse, and I could sample a couple of dozen cells from your motor cortex, I could tell what you were doing. The sensor reads out that neural activity.”

Donoghue says that the motor cortex is likely to be at least partially preserved in many ALS patients, even after paralysis has developed. He says BrainGate “isn’t a Lamborghini yet. It’s clunky, but it will get better over time. That’s how science progresses.”

Prospective participants in a small trial of BrainGate at Massachusetts General Hospital must live within a two-hour drive of Boston. For more information, see www.cyberkineticsinc.com.

Arimoclomol Safety Trial Is Complete

On July 24, the Los Angeles biopharmaceutical company CytRx (www.cytrx.com) announced it had completed its current dose determination and safety study in ALS patients of its drug arimoclomol, a small molecule that may improve cellular stress resistance.

The company plans to release results by the end of the year and, pending regulatory approval, begin a large-scale trial to test arimoclomol’s effectiveness.

FDA Postpones Decision on Neurodex

On June 19, the U.S. Food and Drug Administration advised Avanir Pharmaceuticals (www.avanir.com) that it will delay making a decision about approval of Neurodex for emotional lability in ALS and other conditions until Oct. 30. The study will remain open until at least March 1.

Neurodex is a combination of dextromethorphan hydrobromide and quinidine sulfate that appears to be more effective than either compound alone in reducing episodes of undesired emotional expression.

Stem Cell Research Robust, Despite President’s Veto

Although President Bush vetoed a bill July 19 that would have expanded federal funding for research using human embryonic stem cells, work in the field continues.

The veto has no effect on stem cell research that doesn’t use human embryos, and it only limits federally funded research, not work funded by private companies, organizations or states.

Last year, for example, the California Institute for Regenerative Medicine was established as a state agency mandated to provide $3 billion in funding for research using all types of stem cells.

Timothy Miller at the University of California-San Diego (see “Antisense), says he’s “quite optimistic” about stem cell use in ALS, although the stem cells that he’s betting on aren’t those that form motor neurons.

Stem cells that develop into astrocytes, which act as a support system for neurons, are good candidates for the “first wave of therapy,” he says, adding that they could either be used alone or engineered to produce nerve growth factors.

Edward Kasarskis, M.D., Ph.D., is a professor in the Department of Neurology of the College of Medicine and the Graduate Center for Toxicology and Nutritional Sciences at the University of Kentucky in Lexington.

In 1998, he was part of an American Academy of Neurology committee that developed guidelines (a practice parameter) for ALS and is now studying the role of nutrition and assisted ventilation in this disease. (The study is seeking participants whose ALS began five or fewer years ago and who are not using assisted ventilation. See www.mda.org/research/ctrials.aspx; or contact Megan Thompson in Lexington, Ky., at (859) 323-8509 or megant@uky.edu.

Q: Why should you worry about good nutrition if you have ALS?

A: The issue in ALS is usually not whether you’re eating a correct balance of foods. It’s a matter of eating in sufficient amounts to maintain bodily functions.

People will say that their family member with ALS eats so slowly that everybody else is finished eating and the dishes are cleaned up, and they’re still eating. It’s exhausting to have to concentrate so hard to keep from choking, and you can fall behind on your calories very insidiously.
You won’t cure or slow ALS with nutritional supplementation if you’re already well nourished. However, you’ll prevent accelerated deterioration due to nutritional insufficiency if you meet your caloric needs.

Edward Kasarskis

Q: Do ALS patients have special nutritional needs?

A: We don’t know how many calories to add if you have a lot of nonfunctional muscle contractions, such as fasciculations, cramps or spastic muscle tone. On the other hand, if you’re not as physically active, that factor suggests a reduced caloric need.

The balance between the two is hard to predict.
In our study we’re trying to develop a specific equation to predict the caloric needs in ALS on a patient-by-patient basis.

Q: Is a PEG — percutaneous endoscopic gastrostomy — tube the solution to taking too long to eat and falling behind on calories?

A: A PEG tube is a means to an end. It gives you a second route to maintaining nutrition.
 
Q: Does it also protect against inhaling food or liquids into the lungs (aspiration)?

A: When I first went to work on the practice parameter, everybody said that PEG would prevent aspiration, but actually, it doesn’t really do that.

Some of the aspiration comes from saliva, so you can still get aspiration pneumonia [infection from nonsterile material in the lungs] with a PEG in place.

Also, regurgitation of food into the esophagus and mouth can occur with PEG, especially if you’re lying in bed. A PEG probably lessens the risk of aspiration, but it doesn’t completely prevent it.

Q: Can you prevent aspiration by not lying down after taking food through the tube?

A: It’s probably better to sit up for a while after a meal. But some people can’t tolerate large feedings and do better with a pump that puts in the liquid nutrition a little bit at a time around the clock. You have to individualize this.

Q: Is there a point at which it’s too late to get a PEG tube?

A: This is a controversial point. In my opinion, it’s best to get the PEG in place before the FVC [forced vital capacity, a respiratory measurement] falls below 50 percent of normal, for safety reasons. No absolute rule here, but a message of additional caution if FVC is low.

A low FVC means increased risk from the conscious sedation used during PEG tube insertion. There are reports of supporting respiration with BiPAP during the procedure.
       
Q: Why do some people resist getting a PEG tube?

A: A big misconception is that if you have a PEG, you can’t swallow by mouth. That’s not the case. For example, you can get 90 percent of your nutrition through the tube, and the other 10 percent you can put in your mouth — whatever you find pleasurable. You can take small portions and eat with the family.

There’s also a conceptual hurdle. In the mind of the public, a feeding tube is a sign of being a debilitated little old lady in a nursing home. It brings to mind that sort of image. But a PEG is not a heroic, end-of-life measure. It’s an insurance policy so you get adequate nutrition.

Q: Is there a big difference between PEG tubes and other kinds of tubes?

A: PEG is the usual way in North America to insert gastrostomy tubes. It involves using an endoscope, which is a lighted tube that goes down the esophagus and into the stomach, during the insertion.

In England, tubes are generally placed using a procedures called a RIG, radiographically inserted gastrostomy tube, or PRG, for percutaneous radiologic gastrostomy. You have the patient swallow some barium and take an X-ray to see where the stomach is.

These are about the same in terms of complications, but it makes sense to me to have a look through the endoscope. You have a little more control.

Q: What should you put in the tube?

A: It’s much easier to get commercially available products than to grind up food. There’s a variety of them , like Ensure, Jevity, etc. You can usually find something that’s tolerable.
You need to take in extra water so you don’t get dehydrated, and you can throw in a heaping teaspoon of Metamucil powder every day to prevent constipation.

Q: What about the pleasant effects of things like coffee and alcohol?

A: You should try to do what’s pleasurable. You can put those things in the tube, or if you want to have a beer by mouth, that’s OK. There’s no point in not enjoying what you find enjoyable. If I get ALS, I hope to have a couple of beers a day.

To some, the transition from eating by mouth to eating via a feeding tube feels like giving in to ALS.

Even though it may be extremely difficult to take medicine and swallow baby food, even though meals may be punctuated by coughing attacks and scary choking, even though it takes forever to eat the smallest amounts and weight loss is a serious problem — even so, there’s often a strong resistance to giving up eating by mouth.

As with so many adjustments in ALS, getting a feeding tube presents a big psychological hurdle that — once crossed — proves to be both liberating and empowering.

Common Misperceptions

David Doner, 57, of Ann Arbor, Mich., received a diagnosis of bulbar-onset ALS in October 2005 and finally got a feeding tube in May 2006, after a couple of months of surgical scheduling delays. Over those eight months, Doner, who was president of RKA Petroleum (a CITGO affiliate), subsisted on soft foods, casseroles and ice cream, losing 38 pounds and a lot of vitality.

The bolus method is one way to deliver food through a feeding tube

That’s because weight loss equals muscle loss, says Kate Bednarz, nutrition coordinator for the Eleanor and Lou Gehrig MDA/ALS Research Center in New York.  “The biggest thing we’re battling is weight loss.  If you don’t get enough energy through food, the body will burn muscle to feed itself.”  Waiting too long to get a tube and losing a lot of weight can make both surgery and recovery more difficult.

Bednarz says people often resist getting a tube because they equate it with end-of-life measures, although in fact the opposite is true. “This is a step toward the positive,” she says. Early studies suggest a correlation between feeding tube use and longer survival and better quality of life.

Another common misperception is that once a tube is in place, eating by mouth stops. “You’re still going to eat,” says Bednarz. “You’re just going to supplement what goes in.” The amount of supplementing varies according to individual symptoms, with some eating mainly by mouth and others mainly by tube.

On the advice of his doctors, Chuck Hummer, 69, of Pinellas Park, Fla., got a tube in December 2005, before having significant muscle loss in his mouth and throat.  The surgery was quick and “not particularly troublesome,” says Hummer, a former senior executive with the U.S. Army Corps of Engineers who has slowly progressing limb-onset ALS diagnosed in October 2004. At present he still eats very slowly by mouth and merely flushes the tube with water. But he foresees using the tube more and more for nutrition in the months ahead.

Hummer is philosophical about using the tube. “I found having to go to a walker more psychologically devastating to me than the tube. By the time the tube came along I had sort of decided I was going to get ahead of the game as much as I could.”

Doner, who got a little behind the game due to his weight loss, found that once the tube was inserted, it took several weeks to expand his shrunken stomach enough to accept an adequate amount of nutrition.

“My life is much better now that I’ve gained some weight back,” he says, noting that he still eats by mouth occasionally to get extra calories. “I feel stronger and more active. With bulbar ALS, I would suggest getting the feeding tube right away.”

The Learning Curve

New feeding tubes go through a messy period, while caregivers and the person  with ALS figure out how to keep everything moving in the right direction.

“Do it over the sink!” advises Hummer.

Home health nurses, paid for by most medical insurance, visit regularly to help in the learning curve. “We had our share of accidents, with food coming back out of the feeding tube, but with time that went away, and we got a system in place to do the meds and feeding,” says Doner.

With time and experience, caregivers also find homegrown solutions for common complications, such as leaking and irritation at the stoma, or tube entrance (paint the area with an antacid); or nausea after feeding (offer less formula more slowly); or getting medication through the tube without clogging (crush pills finely and soak at least five minutes).

It also can take trial and error to figure out what to put in the tube.  Which kind of commercial formula?

There are more than 100 types. Fiber or no fiber?  Or should you eat homemade formula?

If a particular formula causes urgent bowel movements, constipation or an allergic reaction, a nutritionist can advise about alternatives. The MDA clinic is a good source of referrals.

Homemade formulas can be time-consuming for caregivers, but some people prefer to know they’re eating “real food.” An industrial blender is essential to successful home formulas, as standard commercial blenders simply can’t blend mixtures fine enough to go through the tube. An industrial blender such as the Vita-Mix 5000 (see “Equipment Corner,”) has a 2+ peak horsepower engine that can whirl food at 240 miles per hour, so fast it may boil.  This makes it possible to blend up whatever the family is having for dinner without having to thin the mixture with so much liquid that it dilutes nutritional value.    

With homemade formulas, work with a nutritionist to ensure a balanced diet, proper food volume, adequate water intake, and food safety procedures.

It’s Still Called a Meal

Perhaps the hardest part of getting a tube is the fear that social eating is now over.

Leslie Silver, of West Caldwell, N.J., who cares for her mother with ALS, was amazed and dismayed to realize “in our small family, we never have a get-together without food of some sort.  For Mom not to be able to eat has put a huge dent in our family activities.”

Although it feels awkward at first, families should look at tube feeding as just another way to eat, says Marsha Dunn Klein, OTR/L, an occupational therapist, tube feeding specialist and co-author of Feeding and Nutrition for the Child with Special Needs (Therapy Skill Builders, 1998).

Klein, who has worked with many families adjusting to tube feedings, finds that acceptance happens faster when families treat the feedings as “meals” not as a “dose” or medical procedure.   “If the family usually socializes around mealtimes, then that has to remain. Otherwise, you’re not only taking away eating but this social time, and then you have a lot more to grieve.”

At mealtimes, the person with a tube may nibble on a bit of food or use the “taste-and-spit” method to savor a special treat.  They may get a blenderized version of what everybody else is having, or they may receive their regular canned formula, then or later. Either way, they don’t have to focus on struggling to eat or on receiving adequate calories, thanks to the tube.

The actual process of putting formula through the tube can feel medical and technical, but it’s still a meal prepared by loving hands — and so still can be a pleasure.

Get ready for fun, entertainment and information about services offered by MDA’s ALS Division and advances in ALS research — the 41st annual Jerry Lewis MDA Telethon is coming to your living room this Labor Day weekend.

MDA National Chairman Jerry Lewis celebrates the final total on the tote board during the 2005 Telethon.

Live from the South Coast Hotel in Las Vegas, the 21½-hour broadcast begins at 9 p.m. EDT on Sunday, Sept. 3, and can be seen on some 190 “Love Network” stations across the country and worldwide at www.mda.org.

This year’s Telethon is a special tribute to MDA’s former president & CEO Robert Ross, who died in June. Ross dedicated his life to the fight against neuromuscular diseases and formed close relationships with many people affected by ALS.

Friends Across the Country

MDA’s ALS Division Co-chairpersons Augie and Lynne Nieto of Corona del Mar, Calif., are slated to appear on the national broadcast of the Telethon. Nieto, 48, who received an ALS diagnosis in March 2005, and his wife work throughout the year to raise awareness of ALS and the services offered by MDA’s ALS Division through various fund-raising events and speaking engagements.

The Nietos, who have four children, will also be featured in a videotaped profile in which they’ll discuss how ALS has affected their lives and how the family copes with the challenges brought on by the disease.

Telethon co-host Tom Bergeron, an MDA national vice president and host of “America’s Funniest Home Videos,” will present a video on the research and services offered by MDA’s ALS Division.  You’ll see exactly what the ALS Division is doing to help those affected by ALS.

Stanley H. Appel, a nationally known authority on ALS and director of the MDA/ALS Center at Methodist Neurological Institute in Houston, will present a video detailing ALS research conducted by the Phoenix nonprofit Translational Genomics Research Institute (TGen). The video will discuss TGen’s MDA-funded project to identify ALS-causing genes.

There will also be a videotaped feature on Stuart Nichols, 54, of Kingwood, Texas, and his son, Andrew, who recently completed their goal of attending a game at every major league baseball park in North America. Nichols received an ALS diagnosis in 2004.

In Your Neighborhood

It’s important for Telethon viewers to meet members of their communities who are living with ALS. That’s why local emcees introduce families affected by the disease during the local segments of the Telethon. These families will discuss the daily challenges associated with ALS and the help and hope offered by MDA’s ALS Division.

by Alyssa Quintero

When it’s time for a gastrostomy, or feeding, tube, you must decide on the kind of tube, tube size, feeding delivery options, type of food, and how you’re going to affix a tube to your abdomen.

Here are some helpful tips to consider when choosing the equipment that’s right for you.

PEG Tubes and Buttons

A PEG (percutaneous endoscopic gastrostomy) tube is the most common solution, as it allows you and your caregiver to administer nutrients directly to the stomach.

After you’ve had a PEG tube inserted and the stoma, or tube entrance site, has healed, you have the option of switching to a skin-level, low-profile replacement gastrostomy device, or button. It lies flat against the stomach, and an external extension set is attached to the tube when administering formula or fluids.

Bard Button

G-tubes generally are made of polyurethane or silicone, and have a balloon, mushroom tip or disk to secure them internally.

Ginna Gonzalez, nurse director at the Kessenich MDA/ALS Family Center at the University of Miami, explained that you can make the switch from a PEG tube to a button once the original PEG tube has been in place for a minimum of eight weeks.

The button allows the person to sleep on his or her stomach; remains firmly in place; remains hidden from view underneath clothing; and avoids a long tube hanging from the abdomen.

Gonzalez explained, however, that the main drawback to using a button for people with ALS is that the loss of use of abdominal muscles can make it more difficult to use for tube feeding.

Buttons, including the Bard Button and the MIC-KEY button from Kimberly-Clark/Ballard Medical Products, are held in the stomach by a balloon. After it’s inserted into the existing tract, the balloon is inflated with sterile or distilled water.

When the button isn’t being used, the extension tube is removed and a small plug similar to the plug on a beach ball is put in the hole of the button. A balloon G-tube can be safely and easily replaced at home, according to Amy Ellis, a nutritionist at the Carolinas Medical Center’s Neuroscience and Spine Institute in Charlotte, N.C.

“The only benefit of the button tube is aesthetics, which can be important,” Ellis said. “Other people prefer the standard PEG tube because it allows bolus feedings to be administered more quickly or because they find it easier to use these tubes themselves if their hands are weak.”

Feeding Delivery Options

PEG Feeding Tube

Ellis explained that people with G-tubes use three delivery options — bolus method, gravity drip method and mechanical feeding pump. Here’s a quick rundown:

• Bolus method: A 60ml syringe is used to pour a liquid nutrition, or enteral, formula down the tube (and bolus extension set) about four to six times a day. To pass the supplements by gravity, pour a cup of water through the syringe.
  
  
• Gravity drip method: A bag filled with canned liquid food is hung from an IV pole and the food dripped through the tube. Ellis said the typical time frame is 30 minutes to an hour.
  
  
• Slow infusion (continuous feeding) by mechanical pump: An electric pump delivers the formula slowly, drip by drip, over hours.

On the ‘Wings’ to a Cure

by Alyssa Quintero

For the sixth year, supporters will gather for the Muscular Dystrophy Association’s Wings Over Wall Street gala to raise funds for the Association’s ALS research program. The event will be held Sept. 28 at the New York Marriott Marquis in New York’s Times Square.

With the longtime support of New York’s financial community, the event has raised more than $5 million for ALS research since its inception. Wings is sponsored by Credit Suisse First Boston, and planners expect to draw more than 1,000 supporters.

Actor William Baldwin and Liz Claman, co-anchor of CNBC’s “Morning Call” and anchor of the prime-time program “Cover to Cover,” will host the evening’s VIP cocktail reception, which will feature auctions and a raffle of a 2007 Mazda MX-5 Miata.

The funds raised 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 City, and of Jeffrey Rothstein, director of the MDA/ALS Center at Johns Hopkins University in Baltimore.

The event also will recognize the recipients of three prestigious awards.

Neurologist Merit Cudkowicz, an MDA research grantee at Massachusetts General Hospital in Boston, will receive the Diamond Award, named for the event’s co-founder, Toni Diamond, who died in November 2004, four years after receiving a diagnosis of ALS.

Bill and Claire Collier of Stamford, Conn., will receive the Spirit Award for their commitment to raising ALS awareness and funds for ALS research. Claire, a mother of three children, received a diagnosis of ALS in 2003.

Tom Rice of West Windsor, N.J., is the recipient of the Michael P. Beier Award, which honors a person who motivates others to help find a cure for ALS. Rice, the managing director in equities for the Credit Suisse Group, was a close friend of Michael Beier, who died of ALS in 2003.

For more information on MDA’s Wings Over Wall Street, call the MDA office in New York at
(212) 689-9040, e-mail specialeventwings@mdausa.org, or visit www.wingsoverwallstreet.org.