by Christina Medvescek

At first, the project was a way of staying occupied, coping with and fending off boredom.

But then the photographs began to come in, from people of all backgrounds, all around the world, eagerly responding to “this guy in a small New England town.”

“The project became more than a goal to meet,” says Fred Siwak.  “It became a window on the incredible kindness of strangers.”

A Unique Venture

In 2003, Fred Siwak sorely needed a window in his life. ALS, diagnosed in 1998 but probably dating to 1994, had confined him to his apartment in the small town of Ipswich, Mass.

Once an avid traveler, photographer and amateur artist, Siwak, 54, had seen all those activities slip away along with his muscle strength.  Early in the disease he had been able to adapt by strapping chisels to his wrists and using body weight to carve out linoleum blocks for prints. His work won top honors in local art exhibits, and a piece was accepted into the MDA Art Collection in 2002. When he could no longer chisel, he turned to computer art, painstakingly creating more than 60 pieces.

But by 2003, even his computer art ability was failing.  He felt himself growing increasingly isolated in his apartment, where he lives alone, assisted around the clock by paid caregivers as well as family and friends.

That’s when a friend took a trip to India, “and the thought occurred to me that it would be neat if he would take a piece of my artwork there and bring back a photo of it,” he says. “I liked the idea of getting my art ‘out there,’ making a statement, a connection.”

This photo of a mother and child taken in a remote farming village near Yangshuo, China, is one of Siwak’s favorites. “This epitomizes to me a special aspect of the project — connecting with ordinary people, living their everyday lives in their hometowns, so remote, so different, yet a connection so basic to us living our everyday lives here in the U.S. It seems to transcend circumstance, culture, place.”

Siwak also asked his brother and traveling friends to snap photos of his artwork in the countries they visited.   Looking at his growing collection of photos, he realized he had hit on a new artistic venture — one that combined his love of art, travel and photography with his new mission of raising public awareness of ALS. He decided to challenge himself to get a photo of his artwork taken in each of the 194 countries in the world.

He called this unique venture World Art for ALS Awareness.

An Amazing Response

In the three years since he began his project, Siwak has garnered more than 1,500 photos from 172 countries. He goes online nearly every day, hooked to his BiPAP machine and typing with a mouthstick, searching the World Wide Web for new participants.

He usually e-mails his artworks to willing photographers who print them out, photograph them and then e-mail the photos back. Although he sends out different pieces, he favors “Butterflies” because it prints and photographs better and is universally recognized. The photos he gets back are almost as good as traveling, often showing local people in their everyday lives who have stopped for a moment to pose with one of his images.

Fred Siwak

“I think, ‘Wow, there’s my art in Bangkok, at the Pyramids in Giza, at the very pole that marks the bottom of the Earth!”

Siwak says one of the best parts of the project has been the amazing response of the people he’s found online. From Brazil: “Other people around the world will be your legs, your arms and carry part of your art.” From Brunei: “I’d consider it a great privilege to help you out in this small way.”  A woman in Zimbabwe drove more than three hours to the nearest town with electricity and Internet connections to send photos to him.

A Larger Purpose

Siwak credits ALS with changing him from a “dabbler” to a serious artist.  This project has led to a number of art exhibits, as well as displays at Virtual Tourist meetings (a Web-based travel community) in Canada and Australia.

And even as the project brings him personal joy and a sense of connection, it serves a larger purpose of educating people around the world about ALS. “I hope this will bring more support to the overall mission of eradicating this disease,” he says. “And hopefully it will be an inspirational example for others with ALS and other similar disability challenges.”

Among the approximately 20 countries still missing from Siwak’s lineup are Angola, Burundi, Cameroon, Central African Republic, Comoros, Congo (Brazzaville), Equatorial Guinea, Federated States of Micronesia, Gabon, Nauru and Suriname.  Anyone wishing to help him complete his project or to learn more about it may contact him via e-mail at seaweed@gis.net.

To read an earlier article about Siwak’s work, see MDA/ALS Newsletter October 2001, “New England Artist Lives Along the Scenic Route.”

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No VEGF Variants Found in North American ALS Patients

A new study of 1,603 North Americans of Caucasian ancestry with and without ALS has failed to uncover any differences in the gene for vascular endothelial growth factor (VEGF) in the ALS-affected and unaffected study participants. The finding is consistent with some previous studies and inconsistent with others.

The new study, coordinated by Teepu Siddique at Northwestern University in Chicago, was published Aug. 8 in Neurology. The investigators looked at three variations of the VEGF gene in their study population to see whether having any of these was associated with developing ALS. Almost every participating ALS patient was compared to someone without ALS who shared the same genetic background and/or environment.

Noninvasive Ventilation Prolongs Life in ALS

In yet another study demonstrating the benefits of noninvasive (nontracheostomy) ventilation, Daniele Lo Coco at Palermo (Italy) University and colleagues found that this intervention slowed the decline in respiratory function and made a significant difference in survival time in people with ALS.

A British study published earlier this year (see “NIV Improves Quality of Life,” May 2006 ) found that noninvasive ventilation improved both survival and quality of life in people with moderate or no weakness of the mouth and throat muscles, and that it improved quality of life in all patients.

In this new study of 71 ALS patients, published online Aug. 9 in Neurology, the average survival time for people who could tolerate a positive pressure noninvasive ventilation (NIPPV) device was 18 months after starting to use it, compared to six months for those unable to tolerate the device.

Study participants with mild to moderate bulbar (mouth and throat) muscle symptoms were six times more likely to tolerate NIPPV than those with severe bulbar involvement.

Oscillation Vest Fails to Slow Respiratory Decline

Correction:The feeding tube photo on page 8 in “It’s Still Eating” (September) should have appeared as it does above.

A vest that delivers high-frequency chest wall oscillation designed to help clear respiratory secretions failed to show benefit on measures of pulmonary function or survival time in a study of nine ALS patients in Hershey, Pa. Results of the study, conducted at the Milton S. Hershey Medical Center, were published in June in Amyotrophic Lateral Sclerosis.


A 46-person study, for which results were announced in December at the 16th Annual Symposium on ALS/NMD in Dublin, found vest users had decreased breathlessness, less noisy breathing and more coughing, but there were no changes in objective measures of disease progression.

Modafinil for Fatigue Under Study

Investigators at the Eleanor and Lou Gehrig MDA/ALS Center at Columbia University in New York are conducting a trial of modafinil (Provigil) to see whether it relieves fatigue associated with ALS.
For details, contact Judith Rabkin at (212) 543-5762 or jgr1@columbia.edu; or Martin McElhiney at (212) 543-5331 or mcelhin@pi.cpmc.columbia.edu.

Study Will Bank Data and Biomaterial

A new 60-site study to collect and maintain a bank of biological material derived from blood samples and patient and family history information has opened, under the coordination of the ALS Research Group and Columbia University Medical Center in New York. The study, funded in part by MDA, seeks to understand the causes of ALS and related diseases. Contact Kate Bednarz at (212) 305-1677 or kbednarz@neuro.columbia.edu.

Stem Cells Come From New Sources

Two groups of researchers recently announced developments in stem cell technology that could have implications for future applications of stem cells to disease treatment.

Scientists at the Worcester, Mass., biotech company Advanced Cell Technology announced online Aug. 23 in Nature that they could derive human embryonic stem cells from single cells taken from eight- to 10-cell embryos. At this stage, taking a cell shouldn’t damage the embryo, they say.

In the Aug. 25 issue of Cell, Japanese scientists at Kyoto University and the Japan Science and Technology Agency in Kawaguchi described how they converted mouse skin cells into stemlike cells by giving them four genes that confer stemlike properties. They don’t know whether the technique will be applicable to human cells.

VEGF: Where Do We Go From Here?

The August publication of a carefully conducted study of some 1,600 North Americans that failed to detect any association between variations in the gene for VEGF (vascular endothelial growth factor) and ALS (see “No VEGF Gene Variants” ) has raised some tough issues for researchers.

Teepu Siddique

For Teepu Siddique, who coordinated the North American study, the implications are clear. “Association studies are meaningful if they can be independently validated by replication,” he says. “The VEGF study,” he says, referring to European findings linking ALS with VEGF variants, “has not been validated.” But not everyone agrees.

VEGF as a natural substance for study and as a target for drug development has a fairly long history. Many still believe it has potential as a therapeutic agent in ALS.

The VEGF protein has been recognized for a long time as an inducer of blood vessel proliferation, particularly when oxygen concentrations drop, which has inspired cancer researchers to try blocking it to reduce blood flow to tumors.

About a decade ago, Peter Carmeliet at Flanders Interuniversity Institute for Biotechnology in Leuven, Belgium, began studying the protein, primarily with respect to its role in the vascular system. But in 2001, when he and his colleagues bred mice with VEGF genes lacking a “hypoxia response element,” and therefore unable to respond to a low oxygen environment, they found that the mice developed an adult-onset neurodegenerative disease that looked a lot like ALS.

Peter Carmeliet

Carmeliet, who has had MDA funding to study VEGF and ALS since 2002, began to look for a specific role of VEGF in the nervous system. He found the multifaceted protein, in addition to its vascular role, also directly stimulates the growth and survival of neurons (nerve cells) and glia, the support cells of the nervous system.

Then, in 2003, Carmeliet and colleagues published a paper in Nature Genetics showing that mice with genetic ALS fared much worse if they lacked effective VEGF genes. Perhaps even more significantly, they found when they looked at 1,668 people with and without ALS in Sweden, Belgium and Birmingham, England, certain DNA sequences in the VEGF gene were 1.8 times more common in the ALS- affected group than they were in the healthy subjects. Oddly, though, in 301 Londoners, they found no such association.

The following year, Carmeliet, along with researchers at British biotechnology company Oxford BioMedica, gave VEGF genes, encased in viral shells and injected into several muscles, to ALS-affected mice, prolonging their survival by 30 percent — enough to spur Oxford BioMedica, a British biotechnology company, to develop VEGF gene therapy for human use.

But subsequent findings in a Dutch and a Chinese population failed to find ALS-VEGF associations.

Possible explanations are differences in study design and methodology; environmental exposures that vary by geographic region and modify the effect of VEGF variants; and genetic background differences in the study populations that alter the impact of VEGF variants.

And there remain those tantalizing rodent studies, in which losing functioning VEGF genes significantly worsened the neurodegenerative process and supplementing with extra VEGF genes significantly ameliorated it.

MDA Vice President for Translational Research Sharon Hesterlee says she remains open-minded about the role of VEGF. “I think what’s key is that, whether or not people with sporadic ALS have VEGF polymorphisms [variants], there may still be a rationale for boosting VEGF levels to try to slow the disease,” she says.

“Finding an associated polymorphism in U.S. patients would have been icing on the cake, but it’s possible that even if decreased VEGF is not a cause of sporadic ALS, increasing VEGF levels may help slow the disease. We do know that artificially decreasing VEGF levels can trigger an ALS-like disease in mice.”

A Short History of VEGF and ALS

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by Kathy Wechsler

"Hope is a self-awareness,” said Ron Trasky, a licensed therapist with 36 years of experience in the mental health field and the facilitator of the MDA/ALS support groups in Denver and Colorado Springs, Colo. “It’s an inner understanding, an inner strength or force that allows an individual to move forward emotionally and physically.”

Without hope, the world would be an extremely dismal place, said Trasky. Whether you have ALS or are a caregiver for a relative with the disease, hope is what keeps you from giving up. This inner force tells you to keep persevering in the face of the life-threatening disease.

“The emotional side of this can really make or break a patient or a caregiver,” said Trasky, who does mental health counseling and research for the Veterans Administration and owns a private practice in which he works with couples, families, sex offenders and clients with obsessive/compulsive disorders. “You don’t want to lose hope in life, because once you lose hope you’re basically pretty much done. I think hope is what keeps us moving forward both as individuals and as a society.”

Good Foundations

MDA’s ALS support groups allow people with ALS and their loved ones to share practical information and find emotional support.

Here are some strategies for promoting hope in the face of the sadness, anger and uncertainties that come along with a diagnosis of ALS.

Acceptance is the first step in realizing hope, said Trasky. It’s an individual strength or understanding about what’s going to happen to you in the future.

“You have to get past the shock, past that grief that doesn’t give you hope,” he said.  “Once you get into the acceptance of it and say ‘I don’t have the ability to do this any more but I accept all my disabilities for what they are,‘ then you can move on in life.”

Sometimes, you accept that you have this life-threatening disease, while your caregiver is unable to find acceptance; or it may be the other way around. You can’t force somebody to the point of acceptance — it’s a process he or she has to go through. And you have to understand and accept that he or she may never accept the disease. 

Communication is another way to build hope. Through MDA support groups, many individuals with ALS find hope and comfort by talking openly with others who are going through similar situations. In sharing experiences, group members give one another hope for a slow progression, possible treatments and cures and the strength to deal with challenges ahead.

It’s also healthy to laugh, cry, scream, swear and vent in any way you choose. It may help to journal the process of life and write down your thoughts, feelings, wishes, hopes and dreams. Trasky’s support group uses scrapbooking as a way for members to gather thoughts and feelings and reflect on their lives.
“I think talking about the disease is how hope is perpetuated in my group,” said Trasky, who says his group uses a lot of dark humor. “People look forward to coming to the next group so there’s a bit of hope there.”

Construction in Progress

Arming yourself with knowledge is another way to promote hope. Trasky’s support groups often have doctors talking about the latest ALS research or medication regime. Learning about advances in research gives you comfort that your hopes aren’t unfounded.

Other experts offer hope as well. An occupational therapist may show you a safe way to transfer your husband into and out of his wheelchair, which gives you both hope for a safer future. Hope can be provided by your dietician when he or she suggests a feeding tube to improve your health.

Learn as much as you can. You may find that there’s a piece of equipment that will allow you to once again participate in your favorite hobby, providing hope for an improved life with ALS.        

Besides learning about progress made in the fight against ALS, take an active role in fighting ALS. Taking part in MDA’s clinical trials helps initiate hope because you know that you’re doing everything possible to forward scientific research that can lead to treatments and a cure.

Most people hope that researchers will find a cure for ALS before they pass away.  You can also find hope in knowing that, even if there’s not a cure in your lifetime, you’ll be instrumental in the development of a drug that will one day save the lives of many.

The same idea holds true for exercise or taking medication: Your active involvement in making yourself healthier can be a source of inner strength. 

Some individuals find hope in spirituality. The feeling that someone or something is helping them get through life gives some people hope that everything will ultimately be okay. Whether they believe in heaven or some other kind of afterlife, spiritual people tend to envision a peaceful future without the pain and suffering of the physical world.

It’s important not to push your religious beliefs on others, however, said Trasky. Upsetting people diminishes hope.

by Alyssa Quintero

For people with ALS with severe hand and arm weakness, using a conventional telephone can be an exercise in frustration. But, there are equipment alternatives that can assist you.

Although many assistive features are standard on today’s phones, such as memory speed dialing, one-touch dialing, speakerphones and voice-activated systems, various additional adaptations and accessories are also available.

Telephone Access Made Easier

David Nolting

David Nolting of Cedar Falls, Iowa, received a limb-onset ALS diagnosis in August 2004. Nolting, 53, who uses a wheelchair most of the time, has extremely limited use of his hands and arms.

When Nolting started having problems holding the telephone’s handset, he received an Ameriphone RC-200 Remote Controlled Speakerphone ($399) by Clarity (www.clarityproducts.com) from the local MDA loan closet.

The RC-200’s features include: a wireless, mouse-style remote that activates phone functions from up to 40 feet away; voice-activated answering; scanning and dialing of 20 preprogrammed numbers; adjustable scanning speed; hands-free conversations up to 15 feet away; and the possibility of mounting to a desktop, wheelchair or wall.

With his right hand, Nolting uses his index finger to right and left click the remote. The system also can be used with pillow and air switches for those who can’t use a mouse.

“Right now, I am using just the clicker switch, but the other switches will come in handy as I lose control of my arms,” Nolting said.

While the system doesn’t offer voice-activated dialing, Nolting uses the remote to scan the telephone’s stored numbers. Once you’re on the selected number, click the remote to dial. The phone automatically hangs up after one minute of silence or if it detects a dial tone.

Zygo Industries’ Vocally voice-activated dialer

Nolting also advises phone users to enter 911 into the system in case of an emergency but cautioned, “This telephone works great in one area of the house. It only has a range of approximately 15 feet, so it wouldn’t be useful if you fell down in a different room.
“If a person is confined to a chair or bed, it’s wonderful because you can dial up to 20 preprogrammed numbers or answer the phone at any time without your hands.”

On the High-Tech Side

As with many high-tech devices, the more a hands-free telephone system can do, the more it costs.

SAJE Technology (www.saje-tech.com) offers the Communicator Complete package ($1,500), featuring a wireless headset, voice-activated telephone system. The headset can be worn, mounted or modified for use in speakerphone mode, and you can enter an unlimited number of contacts.

You can use voice commands to answer and place calls from within 500 feet of the base station. You also can connect adaptive switches to the system, and an optional speakerphone is available.

Also, SAJE’s Communicator Basic package ($425) includes all of the features of the Communicator Complete except that it relies on your existing computer.

Zygo Industries (www.zygo-usa.com) offers a voice-activated dialer, Vocally ($220-$295), that can be used with any standard touch-tone telephone. The dialer stores up to 60 names and numbers.

David Nolting explains that the system could be used with the RC-200 speakerphone to provide a complete hands-free experience with both voice-activated dialing and answering.

Able-Phone (www.ablephone.com) offers the 7000 VC model ($579) that’s controlled via voice commands you program. All phone features are voice controlled, and the system includes a built-in, voice-activated dialer. The dialer phonebook stores up to 60 names and numbers.

For cell phone users, Broadened Horizons (www.broadenedhorizons.com) offers the Vocalize! Bluetooth Voice- Controlled Cell Phone System (starts at $349). The system easily mounts and integrates on a wheelchair, and communicates with the cell phone using Bluetooth technology.

With voice commands, users can answer calls, dial numbers saved in their phonebooks and end calls. You simply use a preprogrammed “magic” word. The system, which includes a lapel microphone, is compatible with cell phones that support the Bluetooth hands-free profile.