High-Tech Talk —
Family Masters Communication Device in Advance of Need
by Tara Wood
 Margit Robien and Muffy |
Although ALS has robbed Margit Robien of typical speech, she finds many ways to communicate: scratching notes on a pad of paper, writing with chalk on a slate board and connecting wordlessly with her ever-present smile.
While writing is the most effective way for her to express her needs today, she and her husband, Jerry, know that, as her fingers weaken from the disease, they'll need other ways to communicate.
Enter the DynaMyte, a high-tech speech output device that the Woodriver, Ill., couple is learning how to integrate into their daily lives.
The lightweight, portable device (it weighs about 3 pounds) from DynaVox Systems allows Robien access to an extensive selection of words and phrases, or to program her own phrases.
She can then press buttons and the computer will speak the phrases in its synthetic voice.
MDA Can Help
The $6,500 device was paid for by the Robiens' insurance, but the couple was happy to hear that MDA announced in May that it will assist with up to $2,000 for the one-time purchase of a communication device such as a speech generator or speech synthesizer.
These aids, known as alternative and augmentative communication devices, are covered by Medicare and by some private insurance policies. MDA will assist with costs not covered by these programs when the device is prescribed by an MDA clinic physician.
"Anything that helps you communicate with others does enhance your life," said Robien, 56, who received a diagnosis of ALS in March 1999.
"Not being able to talk is frustrating and embarrassing. It is also dangerous. Anything that can be done to help is of great value to the handicapped person."
Personal — and Even Bilingual
Robien's machine boasts keystroke-saving features like word prediction, in which the user types the first few letters of a word, and then the machine presents a list of words that the user likely wants.
The DynaMyte, one of several such devices on the market, also allows users to customize category buttons, which are designed to give quick access to common phrases and words relating to these topics. Robien has categories such as conversation, food, medical needs and care for her dog. There's also an emergency feature if she needs to dial 911.
"We programmed several emergency messages, such as 'send the police' or 'send the paramedics.' We also added the statement, 'I am voice impaired' so they would not get confused," Robien said.
Robien said she finds her DynaMyte most useful for communicating at home or when riding in the car. She's even created a way to make it "speak" phrases that sound like German, her native tongue.
For example, the Robiens programmed a version of the phrase "Wie geht es Dir?" which means "How are you?" by piecing together letters to make the sounds that mimic the sentence: "Vee gayt es deer?"
An Active Life
Communication is a vital part of the active life that the Robiens, who married seven years ago (each was previously divorced), continue to lead.
"She has a very lovely garden in the back yard, and she has a water garden with a lot of nice fish in it," Jerry Robien said.
Jerry, a retired chemist who worked with Amoco Oil for 35 years, said his wife is a "very upbeat lady, and always has a smile, so she makes the best of it."
"Making the best of it" means enjoying her 13-year-old grandson, Brandon, who is her "pride and joy."
She also enjoys traveling to visit family in her hometown of Heidelberg, Germany. Robien, who uses a walker and sometimes a manual wheelchair, doesn't shy away from air travel.
"She goes yearly. In fact, we think she should go as long as she can," said Jerry Robien, who said he usually stays home to baby-sit Margit's dog, Muffy.
In addition to their own positive attitudes, the Robiens find helpful support and comfort from 10 other families facing similar challenges at an MDA support group for people with ALS.
Margit attends clinic at the MDA/ALS Center at Washington University School of Medicine in St. Louis.
Putting a Plan in Place
MDA referred the Robiens to speech pathologist Jeff Edmiaston, who recommended that they seek an advanced augmentative communication device while they had time to become comfortable with it, Jerry Robien said.
Edmiaston and other medical professionals handled most of the paperwork and insurance hurdles to secure funding for the device, he said.
The Robiens advise others with ALS to explore the possibility of getting an augmentative communication device — and the earlier the better.
"The time is going to come when she can't write, and then it's going to be really important that we have the DynaMyte here," Jerry said.
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Cord Blood: Banking on a Cure
by Dan Stimson
 Blood from the umbilical cord contains stem cells. Researchers are examining the potential for these cells to treat disorders like ALS. |
Most scientists and even laypeople recognize that stem cell therapy for ALS is probably years away. But for people with ALS who are expectant parents or grandparents, the prospect of stem cell therapy has taken on practical significance here and now.
Encouraged by preliminary studies suggesting that stem cells in human umbilical cord blood can fight against ALS — and buoyed further by lofty advertisements from cord blood banking companies — they face the question: Should I bank the baby's cord blood now in hopes that it could cure my ALS in the future?
Unfortunately, ALS researchers say, there's no clear answer to that question.
Cord Blood Stem Cells
Stem cells are primitive cells that can morph into specialized cell types — cells that many scientists believe have the potential to replace or repair the nerve cells lost to ALS. Embryonic stem cells, the movers and shakers of human development, form all of the tissues and organs in our bodies. Stem cells of more limited potential are abundant in adult bone marrow, where they replenish the constantly turned-over supply of blood cells.
These blood-forming stem cells are actually the key to bone marrow transplants, used since the late 1960s to treat immune deficiencies, severe anemia and leukemia — all disorders of the blood. But recent findings have shown that at least some stem cells in bone marrow have the capacity to form cells outside of the blood lineage, including nerve cells. So bone marrow stem cells — unfettered by the ethical and political complications of embryonic stem cells — are viewed by some as a potential fix-all for a host of diseases, including ALS.
It turns out that the blood in the umbilical cord contains stem cells similar to those found in adult bone marrow. And since umbilical cord cells are easy to collect and, in some ways, close in character to embryonic stem cells, cord blood transplants have gradually become an alternative to bone marrow transplants for treating blood disorders.
Now, just as they did with bone marrow, scientists have begun to investigate the potential of cord blood for treating nonblood disorders. That research, combined with offers from "banks" to store cord blood — for a fee — have people with ALS and other diseases wondering if they should start paying now for a treatment that doesn't yet exist.
Cord Blood Banks
In the past few years, with the growing use of cord blood transplants for blood disorders, cord blood banks have sprung up across the country. Among these banks, which freeze cord blood for long-term storage, some are public and others are private.
The public banks, many of them operated by the American Red Cross, store cord blood for potential donation to anyone in need of a transplant. There are no fees for storing cord blood in one of these banks, but of course there's no way to make them reserve the cord blood for the exclusive use of you or your family.
Private banks, on the other hand, store cord blood exclusively at the discretion of the parents who donated it — a service that comes at a significant price. Typically, these banks charge an initial fee between $1,000 and $1,500 and an annual fee between $50 and $100. Such payments aren't trivial to a family facing large medical bills to fight ALS or another devastating disease.
For the most part, private banks advertise cord blood storage not as an option for adults who are already ill, but as a kind of "biological insurance" for the newborn child. In the event the child develops a blood disorder later in life, his or her own cord blood stem cells will be available for transplant.
The banks do promote other potential functions of cord blood, including its possible use against ALS. For example, Viacord, one of the largest private cord blood banks, states on its Web site that "in addition to … current applications, cord blood stem cells may potentially be used in the treatment of … ALS."
Cord Blood Research
 Merit Cudkowicz |
Though one should be skeptical about believing scientific information in product advertisements, Viacord's statement is reasonable.
Until recently, transplant specialists were concerned that the blood in the human umbilical cord — which measures only about a half cup in volume — might not contain enough stem cells to treat an adult. Those concerns were largely put to rest by a study published last year in the New England Journal of Medicine, in which nearly 70 adults with life-threatening blood disorders received cord blood transplants from unrelated donors. The transplants engrafted and formed new bone marrow in 90 percent of the recipients.
Other recent studies have probed the potential for cord blood cells to repair damage to the nervous system. In 2000 and 2001, Norman Ende, a surgeon at the UMDNJ-New Jersey Medical School in Newark who performed the first therapeutic cord blood transplant in 1970, published a string of articles describing cord blood transplants in mice with ALS, Alzheimer's disease and Huntington's disease.
ALS researchers saw those experiments as preliminary, but intriguing. Robert Brown, director of the MDA/ALS Center at Massachusetts General Hospital in Boston, struck up a collaboration with Ende last year, and their team presented results at the International Symposium on ALS/Motor Neuron Disease in Oakland, Calif., in November. When mice with the familial (inherited) form of ALS were given a systemic injection of human umbilical cord blood cells, they lived about 10 percent longer than mice that didn't get the treatment, the group showed.
"Now, the lab is trying to track those cells, and figure out the basis for the [survival] effect," says Merit Cudkowicz, a neurologist and ALS researcher at Mass General who was part of the team.
Is Private Banking Worth It?
At this point, Cudkowicz and other experts say, it's difficult to guess whether storing cord blood in a private bank will prove worthwhile for people who have ALS.
 Stanley Appel |
One of the main potential benefits of private cord blood banking, of course, goes to the child who donated the blood. If the child ever needs a transplant, he or she won't face the arduous task of finding an immunologically matched donor.
This benefit of private banking doesn't apply to people with ALS who are thinking about storing a relative's cord blood. "If it's taken from your kid or another relative, it isn't going to be a perfect match," points out Stanley Appel, a neurologist and director of the Ronny & Linda Finger MDA/ALS Center at Baylor College of Medicine in Houston.
So, if cord blood transplants ever become a treatment for ALS, it might not matter whether the cells come from a private bank or a public one, say Appel and Cudkowicz, who are both members of MDA's Medical Advisory Committee.
When Cudkowicz's ALS patients ask her about private cord blood banking, "I tell them that we don't know, and that we're exploring the possible use of cord blood cells in the lab. Before you can advocate a treatment for patients, you have to have some understanding of how it works," she says.
Selecting a Private Bank
If you do choose to have cord blood collected and stored by a private bank, you should keep in mind that not all banks are equal.
After her first child developed leukemia at age 4, Frances Verter of Greenbelt, Md., decided to bank the cord blood of her other two children, but discovered it was hard to find information about the procedure.So, she started a Web site (www.parentsguidecordblood.com) that's filled with facts and advice about cord blood banking, including a list of questions that parents can use to interview banks.
If you're shopping around for a bank, Verter says, you should look for one that:
Has accreditation from the American Association of Blood Banks (not the same as membership in the AABB).
Offers a medical courier for transporting the blood from the hospital to the storage facility.
Has a storage facility close to your home, for quick access to the blood.
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Potent Stem Cells Found in Bone Marrow
A new study, published online by Nature on June 23, strengthens the possibility of using bone marrow-derived stem cells to treat ALS and a variety of other diseases.
Human embryonic stem cells, which give rise to all of the body's cells during development, hold the potential for treating many diseases, but their use in research is considered unethical by some because it involves the destruction of human embryos. Stem cells from bone marrow are a possible alternative, but until now, research suggested they had a limited capacity to form cells in other tissues.
In the new study, Catherine Verfaillie and colleagues at the University of Minnesota in Minneapolis identified stem cells in rodent bone marrow that have characteristics similar to those of embryonic stem cells. In a culture dish, the bone marrow cells can divide for many generations, and with some coaxing, they can produce many cell types, including nerve cells.
Moreover, when just one of these cells is implanted into an early rodent embryo, it can give rise to progeny in tissues and organs throughout the adult animal, including brain and muscle. However, when Verfaillie gave adult rodents intravenous injections of bone marrow stem cells, the cells only contributed to blood and other tissues that are rapidly turned over — not muscle or brain.
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Connecticut Man Fights to Teach
by Bill Greenberg
 Paul Szantyr (left) coaches a plumbing student. |
This newsletter's personal profiles often present accounts of people living with courage, hope and dignity in the face of ALS.
Paul Szantyr of Thomaston, Conn., had hoped that his would be one of those stories. Instead, the 15-year veteran high school teacher has encountered an adversary almost as relentless as ALS — a stubborn bureaucracy.
New Strategies
Szantyr, 43, teaches plumbing and heating at the Kaynor Regional Vocational-Technical School in Waterbury, Conn. — a high school within the Connecticut Vocational Technical School System. Szantyr also coaches the boys' cross-country track team.
On June 14, 2000, he received a diagnosis of ALS.
Today, Szantyr still walks, sometimes with a walker. His speech is labored, and he has little remaining upper body strength — a real challenge when teaching physical skills like plumbing and heating.
"When I was a new teacher, I used demonstrations almost exclusively," he explains. "As I began to evolve as a professional, I learned to adjust my methods according to my students' abilities. Then, with ALS, I needed to develop other strategies to adjust for my abilities."
Part of this adjustment meant finding a different way to demonstrate the proper use of the tools of the trades.
"Now I use upperclassmen to demonstrate techniques for the lower classmen as I coach them," Szantyr says. "I don't actually use the tools, because I am unable to do that."
Szantyr also changed his daily routine of classroom instruction and hands-on training.
"I've learned to compensate for my energy difficulties," Szantyr reports. "For example, if there is a lecture for an hour, I would now break that up into three 20-minute segments throughout the day.
"The kids love that. Even as adults, we can't sit and listen to a lecture for an hour, you know."
He adds, "Now, I look at myself in a coach's role when I teach. As the kids perform this or that task, I move about, make suggestions and keep moving."
Szantyr's changes seem to benefit both teacher and students.
"I wish I had done it 15 years ago," Szantyr says. "The kids adapted well to my difficulties. Moreover, they've treated me more humanely than the education system."
'Reasonable Accommodations'
"Last June [2001], I had worked one complete year with my disease and my school principal lauded my efforts," Szantyr recalls. "I got an evaluation where you would think the stars were not allowed to twinkle unless I looked at them first. It was that good."
Then, Szantyr approached school officials with a request for reasonable accommodations under the Americans with Disabilities Act. He asked for a ramp and an automatic door opener so he could go into his shop directly and avoid crowded school hallways.
Szantyr also asked for a speakerphone and some voice-input software. Finally, unable to renew his commercial driver's license, Szantyr asked the school to provide a driver to help transport students to construction job sites as part of their practical training.
During a meeting last September to discuss Szantyr's requests, the school director, along with the state department of education's ADA coordinator, began to question Szantyr's job performance.
"I was taking the school year in three-month increments, checking the markers of my disease and comparing that to the effort it would take to continue," Szantyr relates. "Realistically, my long-term goal was a maximum of two years before I would take their offer of disability retirement."
To Leave or to Stay?
Szantyr continued working, without the accommodations, until almost the end of the school year. In the spring, Kevin Felice, director of the MDA clinic at the University of Connecticut Health Center in Farmington, certified in writing that Szantyr could still work.
But with the words, "We don't believe you've been doing your job all year," the school board placed Szantyr on administrative leave on May 21 — less than a month before the end of the school year. An outraged Szantyr was first concerned for his students.
"This is the time of year that matters most, because one of the things I do is help find employment for my seniors."
With the support of his wife, Angela — a teacher at a different high school — Szantyr is fighting back.
"We have petitions from over 200 kids in the school, as well as all their parents, fighting to get me back," he says. Szantyr also has a lawsuit pending.
A department of education spokesman said the decision to place Szantyr on administrative leave was due to "serious concerns about safety in the classroom," and insisted that every effort had been made to accommodate Szantyr's disability.
"This is a very difficult case and we hope the best for Mr. Szantyr," the spokesman added.
But one mother with three kids who've studied under Szantyr had this to say:
"It seems to me that unfortunately this whole year has been devoted to Mr. Szantyr, the teacher with the disability, instead of Mr. Szantyr, the man who teaches," she wrote. "He showed up for work each day knowing that at some point he would be faced with certain physical challenges, and because of the man he is he met those challenges and conquered them."
While on leave, Szantyr continues to draw a paycheck and full benefits. But he wants to teach, and believes he still can.
"I miss getting up in the morning and looking forward to having something important to do," he laments. "I miss the camaraderie.
"But most of all," he says, "I miss my students."
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Five Honored With MDA Achievement Awards
Five people with ALS have received 2002 MDA State Personal Achievement Awards. The Association's annual program recognizes the personal and professional accomplishments and community service of people with any of the neuromuscular diseases in MDA's program.
"These people provide shining examples of the personal accomplishments and community contributions being made by thousands of people with neuromuscular diseases across the country," MDA President & CEO Robert Ross said of the state-level winners.
One of more than 30 state award recipients will receive MDA's 2003 National Personal Achievement Award. The national honoree will be announced on the Jerry Lewis MDA Telethon Sept. 1-2.
Michael Beier received the MDA Personal Achievement Award for the New York Metro area. Beier, 39, has been a NASDAQ trader for more than 17 years, serving as director of Equity Trading for Credit Suisse/First Boston for nine years.
Since receiving his ALS diagnosis in December 2000, Beier has been dedicated to raising funds for ALS research, helping New York's inaugural Wings of Hope gala raise a staggering $650,000. Beier also serves as a national MDA vice president. He's married and the father of two young children.
The Tennessee MDA achievement award goes to Union City resident James M. Harris.
Harris, 35, was a supervisor at the local Goodyear plant when he received his ALS diagnosis in October. Since then, Harris has helped to organize several MDA events to raise money for ALS research, including a combination dinner, auction and country music concert, and a golf tournament.
Representing Texas is Seguin banker Allen Dreibrodt. A business banker with Wells Fargo, Dreibrodt, 48, has a history of civic involvement that spans three decades.
Since receiving his ALS diagnosis in 1987, Dreibrodt and his wife have hosted an MDA ALS support group, and Dreibrodt writes a newsletter for the group after each meeting. The Dreibrodts, who are active with their local church, have two children and two grandchildren.
L. Richard Bennett of Ogden was selected to receive the Utah MDA award. Bennett, 58, is a self-employed jeweler and served as a helicopter pilot in Korea. A father of six, he's active with MDA and with his local church.
He also attends Weber State University, where he's studying for a degree in electrical engineering technology. Bennett received his ALS diagnosis in June 2001.
On a sad note, Joseph Mayo, who was profiled in The MDA/ALS Newsletter in April, received the MDA Personal Achievement Award for Maine shortly before his death in late May. Mayo, clerk emeritus of the Maine House of Representatives, helped establish an ALS support group and a scholarship fund for children of people affected by ALS.
Mayo, 42, had received his ALS diagnosis in 1999. The award will be presented to his wife and children.
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Ukrainian Clinic 'Stem Cell Treatment' Probed
In the last year or so, several Americans with ALS and other disorders have traveled to a clinic in Kiev in Ukraine to obtain what have been advertised as "stem cell treatments." The treatments reportedly cost $15,000 each.
In April, Bob Broedel, publisher of the online newsletter the ALS Digest, wrote to the U.S. embassy in Kiev to inquire about the clinic, known as EmCell, asking if it's "for real" or a "medical fraud." On May 30, Broedel published a reply from American Citizen Services at the embassy. A representative of the embassy's health unit reported:
I know nothing of this clinic, but I would say in general that most treatments in Ukraine do not meet minimal Western standards. There is no standardization or reliable laboratory facilities. Research does not meet Western standards either, and often figures are inaccurate or at best manipulated for benefit of finances. There is no governmental review, and most research is anecdotal at best. They would not hesitate to use extremely experimental procedures with no concern as to the effect it has since there is no liability. (One doctor tries it, it works so he recommends it to someone.)
It is the Embassy Medical Unit policy never to do invasive procedures in Ukraine due to lack of sterile supplies and inadequate sterile processing. They often do not use universal precautions against diseases such as hepatitis or HIV, which are very high in this area. Without even investigating this site, I would be most hesitant to consider them for anything. It is my experience that medical care in general in Ukraine barely meets 1950s levels and certainly could not possibly offer anything superior to what is available in the U.S.
The ALS Therapy Development Foundation also launched an EmCell investigation this spring, publishing a report in June. Here's a summary of what was found.
The EmCell staff was asked to fill out a detailed questionnaire but failed to answer many of the queries.
EmCell couldn't explain its method for screening against the AIDS or hepatitis viruses in the alleged stem cells.
EmCell couldn't explain its method of stem cell extraction.
EmCell's stem cell delivery method — injecting fetal cells into the abdomens and veins of patients — would have little chance of delivering many cells to the central nervous system, the part of the body affected in ALS.
EmCell's response to a question about the number of cells injected was that the number doesn't matter, since stem cells divide once they're in the body. It's likely, however, that dose does matter.
EmCell stated that the stem cells it uses don't draw the attention of the immune system. Since it's well known that the immune system generally eliminates any foreign cell, this answer raises a red flag regarding the EmCell staff's expertise in biology.
EmCell staff members were unwilling to explain their conclusions about benefits to patients from their treatments. There were no verifiable reports of improvement following EmCell treatment, and the clinic appears to have no real tracking mechanism to identify improvements or declines in patients after they've returned home.
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Caregivers Invited to Try Journal Writing
 John and Suzanne Candell in 1993 |
Suzanne Candell is looking for 100 ALS caregivers to help test a method of affecting emotional and physical well-being in caregivers. Each participant will get a $25 gift certificate and the satisfaction of helping to identify coping tools for caregivers like themselves.
"The Writing and Caregiver Well-Being Study" investigates whether journal writing — akin to writing in a diary — can have an impact on the health and well-being of people caring for someone with ALS or another neurodegenerative disease such as Parkinson's or Alzheimer's.
Dad Had ALS
The study has personal meaning for Candell, a licensed clinical psychologist in Minneapolis and a doctoral student at the University of Minnesota. Her father, John Candell, died five years ago after a nine-year battle with ALS.
"I loved him very much and he is very much missed," Candell says simply. "Watching his grace in the face of his decline, and the care that my mother offered to him, I was really moved by the whole experience. I became interested in seeing whether or not there is a way to develop self-help tools for caregivers that are easily accessible and have been empirically tested."
She decided to test the effectiveness of journal writing because of her love of writing and language, which stems in part from "the joy my father took in speaking — telling stories, joking around, discussing the topics of the day. He was a lawyer, and a great arguer," she recalls with a laugh.
How to Participate
Candell is looking for people ages 18 and older who are currently caring for a family member with ALS or another neurodegenerative disease, and who have access to the Internet. (She expanded the study because of difficulty in locating enough ALS caregivers.) Participants don't need to live in the same house as the person with ALS.
The study, which must be completed online, takes two to two-and-a-half hours of time over five weeks, and involves four sessions of answering questions and writing journal entries. All information is kept confidential. Journal entries aren't read, but are counted for the number of words they contain. Once all four sessions are completed, participants will receive a thank-you gift certificate for Amazon.com, an online bookstore.
For more information about the specifics of the study, go to www. personalityscience.org and click the link for the "ALS Caregiver Study." Candell can be contacted by phoning (612) 926-7071, or writing 3100 W. Lake St., Suite 107, Minneapolis, MN 55416.
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MDA's Caregiver Guide Revised
A new edition of "When a Loved One Has ALS: A Caregiver's Guide" has been issued by MDA. The 60-page guide, first published in 1997, has been updated to reflect new information about MDA's services and recent research findings.
The book covers guidelines for physical and emotional care of the person with ALS, as well as information on how caregivers can build a care team, protect their health, and manage their feelings.
There's an extensive, updated list of current resources on various aspects of caregiving for someone with ALS.
The books are available at local MDA offices, and one is free to every family affected by ALS. Others may purchase the books for $15 each.
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New Care Book Focuses on Quality of Life
Palliative Care in ALS, edited by David Oliver, Gian Domenico Borasio and Declan Walsh, 202 pages, $79.50. Oxford University Press, www.oup-usa.org.
This volume is a welcome addition to a growing list of references that can help guide health professionals and families through the confusing and distressing ALS experience.
Unlike most books on this subject, this one emphasizes "palliative" care, which, according to the World Health Organization and the book's editors, is "the active, total care of patients whose disease is not responsive to curative treatment."
The WHO definition continues: "Control of pain, of other symptoms, and of psychological, social and spiritual problems is paramount. The goal of palliative care is achievement of the best possible quality of life for patients and their families."
This book, with contributions by many authors, contains material on control of the symptoms of ALS (shortness of breath, difficulty swallowing, sleep problems, constipation and pain, among others); psychosocial care; physical and occupational therapy; speech and language therapy; the role of the clinical psychologist on the ALS team; end-of-life care; and bereavement. It also contains first-person accounts by a woman who took care of a mother with ALS and a man with ALS.
The book has an international flavor, with a slight emphasis on the British perspective. The editors have taken care to include some American resources and organizations.
"The care of patients with ALS is a challenge," writes David Oliver, consultant physician in palliative medicine at Wisdom Hospice, Rochester, United Kingdom, in the last chapter of the book, "but a challenge that is worthwhile and needs to be taken. Much can be done to enable patients and families to continue to be active and to be involved in family life and the community.
"The patterns of care may vary across the world, but the overall aim remains the same: the support of patient and family as they face the progression of the disease."
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'Virtual' Reminder — ALS Online
MDA's ALS Division reminds you that the latest information from MDA's ALS program can be found right at your fingertips, at www.als-mda.org. Along with a vast assortment of resources on the disease, MDA's ALS Web site offers the opportunity to meet and communicate with others affected by ALS.
Regularly scheduled chat sessions include the weekly Living With ALS chat at 2 p.m. EDT on Mondays; and three monthly chats: ALS Issues That Matter at 9 p.m. on the fourth Tuesday; the ALS Chat Group from Connecticut (open to anyone) at 2:30 p.m. Thursdays (watch for schedule); the ALS Caregivers' Chat at 10 p.m. on the third Thursday.
You can also find transcripts of the MDA/ALS Clinical-Research chats, just by going to www.mda.org/chat/calendar.html. Read what Dale J. Lange, co-director of the MDA/ ALS program at New York's Mt. Sinai School of Medicine and Medical Center, had to say during his June 25 session about the team approach to treating people with ALS.
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