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MSConnection 2000 #1 Northern California Chapter Y O U R C H A P T E R MS Yoga......page 4 California Courts & You....17 GAP Program....8 The National MS Society...One thing people with MS can count on.
I N T H I S I S S U E
Letter from the Editor MS Connection is the quarterly news-
Your Chapter ..................................... 3 letter of the Northern California Chap-
ter of the National Multiple Sclerosis
Features Society. It is mailed free of charge to
MS Yoga ............................................. 4 chapter members.
Nursing Home Visitors ..................... 6 The National Multiple Sclerosis Society
GAP Program .................................... 8 is proud to be a source of information
Family Programs ............................. 10 about MS. Our comments are based on
Public Awareness............................ 12 professional advice, published experi-
Financial Assistance ....................... 18 ence, and expert opinion but do not
Sound-Alike Organizations ............. 19 represent therapeutic recommendation
Direct Mail Program ....................... 23 or prescription. For specific information
and advice, consult your personal phy-
sician.
Health Focus The National Multiple Sclerosis Society
Chapter Funds Research .................13 does not endorse products, services or
manufacturers. Such names appear
In Every Issue here solely because they are considered
Tips from Toni ..................................16 valuable as information. The Society
Online with Bill Lind ....................... 22 assumes no liability whatsoever for the
use or contents of any product or ser-
MS & The Law vice mentioned.
California Courts and You................17
© 2000
Speak Out National Multiple Sclerosis Society
MS Poem ..........................................15 Northern California Chapter
150 Grand Avenue, Oakland, CA 94612
Volunteers Phone: (510) 268-0572
Volunteer Opportunities................... 9 Fax: (510) 268-0575
Community Resource Volunteer.... 21 E-mail: info@can.nmss.org
Web: www.msconnection.org
Fundraising
Dinner of Champions ..................... 24 Chair Secretary
1999 Bike Tour Results .................... 25 Jill Wright, MD Marc Stolman
Women Against MS Tea ................. 26
Vice Chair Treasurer
MS WALK 2000 Registration.......... 27 Kathleen Maureen Lucey
O. McEligot Mihelich
Listings
Self-Help Groups ............................ 28 Chapter Programs Chair
Classifieds ....................................... 30 Joan Hall-Feinberg
Calendar .......................................... 31 Chapter President
and... Julie E. Thomas
Kids Konnections pull-out section! Newsletter Editor
Veronica Navarrette
2 2000 #1 Toll-Free Number: 1-800-FIGHT MSL E T T E R F R O M T H E E D I T O R
Your Chapter
Dear Friends,
Welcome to the first issue of MS Connection for the year 2000! I
am honored to introduce myself to you as the new editor of
MS Connection for the Northern California Chapter. Former
Communications Manager Terence Keane left behind a deserving
reputation as a dedicated editor with a commitment to excellence. I
hope to pick up where Terence left off, not only continuing the
tradition for excellence but maintaining the tradition for
providing informative and entertaining pieces for our readers.
On that note, let me pass on the good news that
MS Connection was honored with two Outstanding Newsletter
Article awards at the National Multiple Sclerosis Society
Leadership Conference held in Anaheim last November. We
received honors for our coverage on topics that highlighted
employment and independence issues for people with MS. Our mission:
Although awards are always nice, we will continue to provide to end the
coverage of these and other related topics for its own reward of
making a difference for the thousands of readers living with MS. devastating
Now that we are on the cusp of a new century, we thought it effects
would be an appropriate time to recommit ourselves to our mission:
to end the devastating effects of multiple sclerosis. Although many of
are familiar with our mission, many more may not have a full multiple
understanding of what we do at the Chapter to one day accomplish
our goal. This first issue therefore, highlights the research, sclerosis.
programing, and fundraising efforts that your chapter sponsors.
We hope you enjoy learning more about the Chapter and are
inspired to participate in the various opportunities that are
available to you.
In sum, remember that your chapter newsletter is a forum
that allows our readers an opportunity to participate. If there are
topics or issues that you would like to see addressed, then let us
know! You can E-mail me at veronica.navarrette@can.nmss.org or
call me at 1-800-FIGHT MS. May this century of multiple sclerosis
be its last!
Sincerely,
Veronica Navarrette
Communications Coordinator
Visit Our Website: www.msconnection.org MS Connection 3Y O G A P R O G R A M
MS YOGA S-T-R-E-T-C-H-E-S On
O
n October 23 and 24, the The mood was euphoric as
Chapter held its second clients, many using wheelchairs,
annual Yoga for MS learned how to bend, twist and reach
Instructor-Training weekend in further than they’d ever imagined.
Belvedere (Marin). The hands-on Many indicated that they plan to
workshop introduced adaptive “take the plunge” and begin
yoga for MS to Bay Area yoga yoga classes.
instructors and to our clients. Yoga is uniquely
Led by the National suited for managing MS.
Multiple Sclerosis Society’s The practice of yoga
favorite yogi Eric Small, a starts “where you are,”
25-year Iyengar yoga both physically and
teacher who has lived emotionally. According to
with MS for more than 40 years, the Naomi Hiller-Reynolds, a yoga
lively workshop schooled 23 instructor and longtime student of Eric
experienced instructors on tailoring Small, “Yoga increases breathing
traditional yoga poses for a variety of capacity, addresses tension, moves the
mobility levels. Nearly 50 clients organs and exercises the limbs. It
learned stretching and breathing tech- stimulates the various systems of the
niques useful for fatigue, digestion, body. That’s good for anyone, no
balance and spasticity. At the same matter your level of ability or mobility.
time, clients acted as “models,” con- If you go from no movement to some
tributing to the professional develop- movement, you’ve done something
ment of yoga instructors interested in good!”
MS and disabilities.
Quality of Life: W h y Yo g a ?
Exercise at a lower temperature: Yoga moves the body without
intense heat
Alleviate Anxiety: Yoga soothes the nervous system.
Increase concentration: Yoga teaches focus.
Move the limbs, organs and major body systems, no matter the
level of mobility: Yoga can be tailored to address any state of
body.
4 2000 #1 Toll-Free Number: 1-800-FIGHT MSYOGA Classes Prove Popular
F
or the past year, your Chapter Classes were held in Hayward and
has been offering yoga classes Oakland. This year, evening classes
throughout the Bay Area. This will be offered in Oakland, as well as an
program has proven to be incredibly affiliated class in Berkeley.
successful, as many have discovered Classes were also held in San
the benefits of regular participation. Francisco and San Rafael. The San
Our instructors, who received training Francisco class proved so popular, that
through our Yoga for MS Instructor the instructor created a second,
Training, have been working hard to affiliated class for those who wish to
offer classes that are appropriate for all continue on a regular basis. This is
levels of ability. As one participant good news for all participants, as more
said, “The instructors were very people are now able to benefit from this
understanding of our limitations.” program. Classes will continue to be
One of the many benefits of offered in both of these cities.
taking a yoga class offered by the Our yoga program is now begin-
National MS Society is the opportunity ning to spread north. Starting this
for support from other people who are year, we will offer classes in both Santa
experiencing similar challenges. When Rosa and Arcata. People in these areas
asked how yoga helped her, another are very excited for this opportunity,
participant stated, “I truly believe this and we hope to continue to spread the
has helped me mentally, physically, and program elsewhere. In fact, individuals
emotionally.” living in outlying areas can help make
Through a generous grant from this happen. Our Grants for Area
the John Muir/Mt. Diablo Community Programs (GAP), currently has funds
Health Benefit Corporation, we offered available to assist in bringing activities
two, ten-week series in Danville, to outlying areas. For more informa-
Antioch, Martinez, Concord and tion on how you can participate in GAP,
Walnut Creek. This was an excellent please see the article on page eight.
introduction to the potential benefits of So if you’re looking for a way to
yoga to the people of Contra Costa reduce stress, increase or maintain
County. We will continue to offer flexibility and strength, improve your
classes in Concord, and some of our ability to focus and meet new people in
teachers will continue to offer affiliated a supportive and fun environment, then
classes throughout Contra Costa give MS Yoga a try! Watch for the MS
County. Calendar for details regarding classes
Yoga classes were also introduced in your area.
to people in Alameda County with the
help of a grant from MacroMedia.
Visit Our Website: www.msconnection.org MS Connection 5V O L U N T E E R O P P O R T U N I T I E S
Nursing Home Visitors
By Christopher Cherney
Visitors commit to nursing home
M
ost people would rather not residents with MS. They show up for
visit a nursing home. People people who live in nursing homes. Says
with frail health and who are Visitor Karen Gillette of Alameda, “My
dependent live in nursing homes. resident so enjoys my complete
Since our culture is one obsessed with attention. I’m a good listener, so it’s a
vitality and independence, paying a visit good fit for me.”
to a nursing home resident would Visits can involve reading out
probably not be among the first choice loud together, sharing family photo-
for many people. graphs, discuss-
Yet, many ing distant trav-
people do visit nurs- els, or watching
ing home residents. a San Francisco
During the past 49ers football
18 months, the game. Visits
National Multiple might occur in a
Sclerosis Society’s resident’s room,
Northern California or in the front
Chapter has trained lobby with fam-
28 volunteers to do ily and friends.
just that, visit nurs-
ing home residents Nursing Home Visitor trainees,
who have multiple Fred and Fran Ducey, enjoy lunch
sclerosis (MS). during a recent training session.
The Gift of
Presence and Friendship At the same time, visits
need not last long. Thirty minutes of
Many nursing home residents purposeful presence can make a world
yearn most for one thing — human of difference. Five minutes of meaning-
contact. That is what Nursing Home ful eye contact or gentle touch can
Visitors provide. Gentle, human con- truly heal.
tact. Visitors give residents the gift of Inevitably, presence leads to
presence. In the nursing home context, friendship. Says Bob Valkevich of
the power of presence cannot be Pleasant Hill, a Nursing Home Visitor
underestimated. for the past nine months, “I no longer
6 2000 #1 Toll-Free Number: 1-800-FIGHT MSlook at my visits as a commitment to Founded on the gift of human presence,
someone else, but a sharing between the program embodies compassion and
two friends, which benefits me as much is a credit to the Society.
as my so-called ‘client.’” Visitor Karen If you feel that you would like to
Gilletter agrees. “It’s been such a win- provide the gift of your presence to a
win thing. I’ve gotten as much out of it nursing home resident with MS, please
as the resident has.” call 1-800- FIGHT MS and ask for Karrie
Katzenberg, Emotional Support Manager.
The Program
Christopher Cherney is the
Administrator at Courtyard Care
Nursing Home Visitors come from
Center in Hayward where seven people
all over the Bay Area. Although the
program currently is focused on with MS live. He helped launch the
training volunteers in Alameda, Contra Nursing Home Visitor program in 1998
Costa, Marin and San Francisco and remains actively involved in
counties, Visitors come from as far training and supporting volunteers.
away as Yountville.
Training sessions are held two or Additional Emotional
three times per year. They include an
overview of nursing homes, a discussion
Support Programs
of multiple sclerosis itself, and feature You are not alone
the practice of one-on-one, active Would you like to have ongoing phone
listening. A training binder and support and companionship from
supporting documentation are provided someone else who knows what it is like
to all volunteers. to live with MS? Call Karrie at
Afterward, visitors are matched 1-800- FIGHT MS and ask to be
with nursing home residents in their matched with a phone buddy volunteer
local communities. Visitors are who will call you once a week for a
provided the name of a contact person friendly and supportive chat.
at the facility and are encouraged to
bring questions or concerns to Society Loving with MS
personnel. A Couples Counseling Group can help
To maintain their enthusiasm, you and your partner build a stronger,
volunteers gather each month, to closer relationship by improving com-
discuss their experiences as visitors. munication and support skills. Group
Stories of compassion and connection meets weekly Wednesdays,
abound, vulnerabilities are bared, March 1 – April 5, 6:30-8:00 p.m. in San
laughter shared. Rafael. Space is limited. Call Carol at
At its root, the Nursing Home 1-800-FIGHT MS to register now!
Visitor program is powerfully simple.
Visit Our Website: www.msconnection.org MS Connection 7G A P P R O G R A M S
Chapter Helps Bridge the GAP to Outlying Areas
H
orseback riding in Lake
County? Aquatics classes in
Arcata?
Our chapter area covers a wide
geographic territory and many diverse
communities. Although living in less
populated areas has benefits including The GAP Program has helped to
cleaner air, less traffic and more fund Aquatics classes in Arcata.
opportunities to enjoy nature, for many
who reside in these areas, it can be a
provides an ideal way to benefit from
challenge to access the various services
being a volunteer. Not only can indi-
sponsored by the National Multiple
viduals feel good about getting involved
Sclerosis Society.
in a project, they can also participate in
As a leading provider of services the programs they help design.
to people with MS, The MS Scociety is
In the past, the Chapter has
committed to serving all the communi-
funded aquatics classes in Monterey
and Arcata, as well as therapeutic
Grants for Area Programs (GAP) offers assistance in
bringing programs to the more outlying areas of the
Northern California Chapter Territory.
ties in our 13 county territory, from San horseback riding in Lake County.
Mateo County all the way up to the These programs would have been much
Oregon border. Grants for Area Pro- more difficult to organize without the
grams (GAP), was established in 1998 assistance of local community
to assist in bringing programs to the members. After all, who knows the
outlying areas of the Northern resources and needs of a local commu-
California Chapter territory. This nity better than those who live there?
program provides the means for Applicants are responsible for finding
self-help groups or individuals to apply instructors and sites for the programs,
for grants in order to bring new and as well as scheduling meeting times.
exciting programs to their area. GAP Working with staff members from the
chapter, these people have become
8 2000 #1 Toll-Free Number: 1-800-FIGHT MSinstrumental in bringing programs to
their areas.
GAP funding covers the following
counties: Del Norte, Humboldt, Lake,
Mendocino, Napa, Solano, Sonoma,
Trinity, as well as the eastern portions
of Contra Costa. There is ample
funding available. All we need are
enthusiastic volunteers to locate the
resources and apply for funding. If you
are interested in bringing a program to
your area through the use of GAP, The GAP Program has made
contact Linda at 1-800-FIGHT MS horseback riding for people with
(1-800-344-4867). MS possible in Lake County.
Lend A Hand
Seeking volunteers. If you have time to help improve the lives of
people with MS, call Kim at 1-800-FIGHT MS.
Event Volunteers: Join the fun at the Top Hat Classic in San Ramon (April 29) or
at an MS WALK site near you (April 8 & 9). Help with registration, rest stops, route
marking, food preparation and more. Volunteers at both events receive free meals,
and at the Top Hat we’ll throw in a free T-shirt too!
Nursing Home Visitors: Make a difference in the lives of nursing home residents
with multiple sclerosis by becoming a Nursing Home Visitor. Training will take
place this spring in Santa Rosa. Call Karrie at 1-800 FIGHT MS to ask for an
application.
Program Intern: An organized, detail-oriented person is needed to assist our
Information and Referral coordinator with researching and updating community and
professional services information for use by our clients. Great opportunity for
individual interested in community-related work.
Employment Subcommittee: Help people with MS find and retain jobs.
Office Help: We need people during this busy event season to help in our Oakland
office. Projects mailings, filing and phone work. Students welcome!
Visit Our Website: www.msconnection.org MS Connection 9F A M I L Y P R O G R A M S
Joining the Chapter Family
M
ultiple Sclerosis affects not enjoying fun and festivities. This gives
only the person with the dis- people the chance to connect with
ease, but loved ones, too. others who may be experiencing simi-
Because partners, lar issues and,
spouses, children, par- perhaps, make
ents, siblings, and new friends.
friends can also experi- Other
ence stress, confusion, family-related
loss, and isolation due programs include
to this disease, the Mom, Dad, MS,
National MS Society and Me, a pro-
strives to provide pro- gram for parents
grams for the entire and children
family. We offer many ages 6-12. This
opportunities for people workshop offers
to develop strategies for parents tools for
coping with the coping with the
unpredictability of the added challenges
disease and the added that MS brings
stressors it brings to to parenting.
their everyday lives. Meanwhile, a
Continuing to counselor leads
cultivate social children in a
contacts while creative
dealing with the The Northern California Chapter offers activity that
affects of a poten- many programs for the entire family. enables
tially disabling them to
disease is very important. After a diag- explore their feelings about MS. This
nosis is made in the family, some people program helps build a better founda-
may experience a gradual loss of tion of communication within the fam-
friends. Some of the programs spon- ily. For those with older children, our
sored by the Northern California Chap- new Parent/Teen Adventure Program
ter offer opportunities for families to may offer an opportunity for parents
gather in social situations. The Annual and teens to grow together and open up
Holiday Party and the Family Fun Day new avenues for communication. This
are both events where people can meet fall, we will be inviting parents and
others who are affected by MS, while teens on a one-day sea-kayaking
10 2000 #1 Toll-Free Number: 1-800-FIGHT MSadventure on Tomales Bay in Marin of coping strategies, including fulfilling
County. Participation in this fun and emotional needs and building support
exciting program can lead to new, sup- networks.
portive connections for teens and par- OurMoving Forward program is
ents, both with each other and with an excellent resource for those who
others who are experiencing the joys of have been diagnosed with MS and for
adolescence! their loved ones. At this workshop,
For those of us with a loved one people who are confronting the
with MS, our Emotional Support diagnosis can learn about effective
Programs provide many opportunities coping, the latest research and
to discover effective coping skills. We treatment options, and employment
offer a Support Group for Significant issues.
Others in Oakland, where people can go Relationships and MS is also an
to receive peer support. This group is excellent educational program for
open to all individuals who have a people with MS and their loved ones.
loved one with MS. We have also This workshop discusses how MS can
recently added a significant other to affect relationships and teaches skills
our peer counselors list. She has first- for increasing satisfaction and support
hand knowledge about what it is like to within the relationship. Participants
live with someone with MS, has been are given the opportunity to explore
trained in active listening, and is avail- ways to enhance their relationship.
able to answer questions and provide Family members are always
support. We also offer professionally- welcome at all our educational
led short-term counseling groups. programs. In fact, they are highly
These groups, usually five weeks in encouraged to attend.
duration, focus on topics, such as
We are looking to the future to
couples issues or the problems one
develop other ways to support families.
faces while parenting with MS.
Eventually, we hope to expand the
Our educational programs are an Phone Buddies program to include
excellent source for support and significant others, as well as to create a
information for family members. For support group for children. Our family,
example, the Caregivers Retreat is recreational and social activities will
geared specifically to those that provide continue to expand. So if you are look-
care for a loved one with MS. This day ing to increase your circle of support,
of self-care and relaxation for spouses, look to your local chapter for many
family members and other opportunities!
nonprofessional caregivers offers skills
for managing stress and the
responsibilities of the care-giving role.
The program also includes an overview
Visit Our Website: www.msconnection.org MS Connection 11P U B L I C A W A R E N E S S
Campaign Increases MS Awareness
F
or the second year in a row, the letters “MS” were emblazoned across hun-
dreds of buses, billboards, BART posters and bus shelters throughout the
Bay Area. The international advertising agency McCann-Erickson, famous
for the slogan “It’s the Cheese,” engineered another ambitious public awareness
campaign. Still, no one could have predicted the incredible success of this pro bono
effort!
In 1997, research showed most people did not know what the initials “MS”
stood for. As a result, McCann-Erickson set out to make MS memorable, creating a
series of advertisements that
played on people’s common
associations with the letters.
Running from March
until May, the 1998 cam-
paign (equivalent to
$350,000) yielded a modest
increase in public awareness
within a five-county area.
Ads on buses, billboards,
BART posters, bus shelters
and radio spots resulted in
fewer people confusing MS
with other diseases.
In 1999, McCann- Former Communications Manager, Terence
Erickson streamlined the Keane, poses with one of the many MS Public
ads, ensuring that all Awareness ads that were posted throughout the
three would receive equal Bay Area with the help ofMcCann-Erickson.
exposure within an eight-
county area. The first read
“MS: It’s not a software company”; the second, “MS: It’s not a magazine for femi-
nists”; the last, “Multiple Sclerosis.” All contained small print reading “It’s a neuro-
logical nightmare” and included the MS logo and the 1-800 telephone number. The
campaign’s total value was roughly $500,000.
In just the past year, there has been a 150% increase in those proven aware of
MS. That’s a 175% increase in two years! The number of people unaware of the dis-
ease has decreased and there has been a significant increase in those likely to sup-
port our cause. Special thanks to Tamara Birdsall and Lynne Scott of McCann-
Erickson for their help in the success of the MS public awareness campaign.
12 2000 #1 Toll-Free Number: 1-800-FIGHT MSH E A L T H F O C U S
Doctor Uses Chapter Grant to Study
Psychological Toll in MS Patients
A
lthough many people in the MS
community
can recognize the disease’s
physical toll, it can be more difficult to
assess, and to address its emotional
impacts.
The desire to find ways to help
lessen these negative psychological
influences has led the Chapter to sup-
port the research of Dr. Arne
Boudewyn. Nearing the end of its sec-
ond year, the doctor’s study,
“Development of the MS Psychosocial Dr. Boudewyn, Ph.D., pictured with
clinic nurse, Tracy Stewart, R.N.
Assessment Scale,” aims to develop and
test an interview tool that measures Society has realized they need to do
treatment therapies and identifies something in the interim, before a cure
people who might benefit is found, that deals with patients’
from enhanced social or psychological emotional and psychological needs and
support. not just the physical ones,” added the
“The inter- University of
est really came “I think it’s only in recent years that the California, San
out of work with National Multiple Sclerosis Society has Francisco Mount
clinical patients. realized that they need to do something in Zion MS Center
There were a lot the interim, before a cure is found, that researcher.
deals with patients’ emotional and
of issues that The
psychological needs and not just the
weren’t being physical ones.” Dr. Boudewyn, Ph.D. realization is not a
addressed. new one.
Patients didn’t
At a recent
feel like they had enough time to deal
symposium in Basel, Switzerland, a
with these secondary issues when they
majority of nurses articulated an acute
had only short periods of time to share
awareness of the emotional difficulties
with their neurologists,” Dr. Boudewyn
faced by persons with MS. According to
said.
the nurses, psychological symptoms
“I think it’s only in recent years
that the National Multiple Sclerosis Continued on the following page . . .
Visit Our Website: www.msconnection.org MS Connection 13H E A L T H F O C U S
Continued from the previous page . . .
and sensitivities include denial of dis- utilizing an $87,604 Diamond Honor
ease, unrealistic expectations, weight Roll Gift from the Chapter (separate
loss (or gain), sleep disorders, sexual from another $489,000 the Chapter
dysfunction and suicide creation. Not contributed to other research projects)
surprisingly, the nurses considered it to compile a series of interview ques-
part of their duty to act as the first line tions designed to assess psychological
of defense against patient depression function in MS. The so-called MS
and treatment failures. They also felt it Psychological Assessment Scale
was important to function as a source (MS-PAS) focuses on eight key themes
for referrals to counselors and including perceived interference with
therapists for psychological assistance. daily work and social activities, social
Meanwhile, another UCSF support and severity of MS. Other
researcher, David questions target fi-
Mohr, Ph.D, is nance and insurance
For his part, Dr. Boudewyn is
currently examining concerns.
utilizing an $87,604
treatment alternatives Although incom-
Diamond Honor plete, the list of queries
for MS patients
battling depression. Roll Gift from the Chapter. includes:
Essentially, the doctor
is trying to determine the efficacy of
How has your mood been lately?
three therapeutic approaches. In an
early written description of his Have you found yourself tearful?
research project, Dr. Mohr stated:
What do you do that gives
“In short, we have found the
treatments we offer are highly effective yourself pleasure?
for about 40%-50% of the patients we
How many days have you
treat, with the remaining having a very
resilient, refractory depression . . .We spent alone?
are proposing a study that compares
treatment programs: a psychosocial Who do you talk to?
treatment that uses both individual
and group psychotherapy, a medication Have you found that MS limits or
arm that will treat depression aggres- causes problems in your
sively, and a combination, which uses relationships?
both the psychosocial and the medical
treatment arms.” Have their been problems
between you and your
For his part, Dr. Boudewyn is
spouse?
14 2000 #1 Toll-Free Number: 1-800-FIGHT MSS P E A K O U T
At the same time, interviewers
will rate patients’ coping “skills.” Dr.
MS Poem
MS POEM
Boudewyn hopes to complete his by Kimberly Childers
research in June, using the third year
for write-up and dissemination. “What Lately my dreams
I would like to do is “norm” it on a And the thoughts
much larger sample and have people
use it at other centers,” he said. “We Before Slumber
really need to see if it can be
Are full of color
implemented on a broader scale.”
“There seems to be a correlation And incredible imagination
between resources, and the ability to
bring those resources to bear in solving My mind comfortably
problems related to MS and anxiety,” Regurgitates
Dr. Boudewyn explained. “Ultimately, The bizarre
we are hoping that the interviews
themselves will help us get the The Phantomlike
information we need to develop needs Luminous fairies
assessments and effective referrals.”
In 1999, the Society spent a Moving bodies
record $22.5 million to support Cloaked in opaque white
research programs. Since its founding
53 years ago, it has invested more than To me it seems
$260 million to find the cause, This disease
treatments and a cure for MS. During
the past year, the Society’s volunteer Has awakened
scientific advisors reviewed 300 re- Another part
search proposals and approved 129.
The Society has more than $40 million Of my dormant brain
in current and future commitments to When something is
more than 300 projects for which
money must be raised. Taken away
To learn more about Dr. Boudewyn’s It is replaced
research you can contact him at:
Maybe this is an odd law of
415-353-7461 or write him at,
timeless evolution
Dr. Arne Boudewyn, Ph.D.
UCSF/Mount Zion Medical Center Maybe a precious gift
1701 Divisadero Street, Suite 480 from the angels
San Francisco CA 94115-1642
E-mail: boudewyn@mscenter.ucsf.edu
Visit Our Website: www.msconnection.org MS Connection 15T I P S F R O M T O N I
Cooling Exercise
by Toni Wigle, OTR th a t I get
m m ended to heat.
ear Toni, ctor has reco y sensitive ng an
D o er i
My d but I am v nd I’m try t I
exe rcise, u se d to a n ced tha t
i
more jog like I m not conv ent the hea Ask the Expert about Tips for Daily Living.
t ’ ev
I can’ class, but I ries and pr u have any Write to “Tips from Toni”
cs lo o
aerobi n enough ca have. Do y National MS Society
ur I
will b ty problem em? S.D. 150 Grand Avenue Oakland, CA 94612
vi bl
sensiti nto this pro or E-mail toni@msconnection.org
ti
insigh Water also allows people at all levels of
T
hanks for your letter. Some function greater mobility and the
studies show that nearly 40% of opportunity to build on the aerobic
all people with MS have intensity needed to burn the desired
sensitivity to heat. As temperatures amount of calories. An hour of aerobic
rise in heat-sensitive bodies, the effects exercise in water can burn more than
can range from mild discomfort to 300 calories.
HOT
difficulty SITESThe challenge
with mobility. Many recreational pool facilities
for heat-sensitive people, therefore, is throughout the Bay Area are available
keeping body temperatures low while to the public for exercise. Water
engaging in exercise. Wearing cooling temperatures usually range between
vests, using a misting device or 84-94 degrees; this is dependent on the
exercising in cool environments with type of individuals and recreational
air conditioning, can be helpful but organizations that use the respective
often aren’t enough to keep bodies cool. pool. Pools utilized by swim teams
Swimming, however, is an excellent often means that theGo temperature
to: will
way to get aerobic exercise while be lower than pools used by older
www.nmss–nocal.org
maintaining a low body temperature. adults. In general, lap pools and
info@nmss–nocal.org
When exercising in water, the outdoor pools have low overall ambient
body cools off four times faster than it temperature. Your yellow pages can be
does while on land. The low a good source for seeking out
temperature water serves as a recreational pool facilities. The
mechanism that whisks away heat that Northern California Chapter also spon-
the body generates. The cool water sors Aquatics classes for people with
also helps in decreasing pain, stiffness MS led by trained professionals. Class
in joints and swelling, and improves registration information can be found
overall circulation and respiration. in your monthly MS Calendar.
16 2000 #1 Toll-Free Number: 1-800-FIGHT MSM S & T H E L A W
The Jogger
California Courts and You
H
ave you been involved in a California Court
Proceeding in the last two years? Perry Hall,
wants to hear from you if you or someone who
you care about is affected by multiple sclerosis and was
denied equal access to the courts based on the lack of
appropriate accommodation to your disability. A juror,
plaintiff, defendant, attorney, or judge, anyone with a
disability can be adversely affected by the California
courts’ lack of compliance with the ADA.
Please contact Perry Hall on staff at the Epilepsy S
O
R
E
U
R
C
S
E
Society of San Diego County at (800) 408-4322 and/or
carinmemm@aol.com, if you have been in state court
and the outcome of your involvement has been affected
by your having a disability. With your help, this advo-
cacy project will bring our court system up to date.
Thanks!
T h r e e B i g W i n s f o r P eRo Ep lSe OwUi tRhC M S
E S
The California Legislative session ended on a mostly positive note for the MS Society.
Governor Gray Davis has signed three bills supported by California Chapters into law.
Second Opinion: Health plans and some insurers are required to provide or
authorize a second opinion from “an appropriately qualified health
professional.”
Medi-Cal Buy-In: Individuals who meet the federal definition of “disabled”
and earn up to 250% of the federal poverty level can buy Medi-Cal coverage
on a sliding scale (ranging from $20 to $250 a month.)
Universal Coverage: The Secretary of the California Health and Human
Services Agency is required to submit a report to the Legislature by Decem-
ber 1, 2001 which establishes options for providing universal health coverage.
Visit Our Website: www.msconnection.org MS Connection 17D I R E C T S E R V I C E S P R O G R A M S
Chapter Can Lend a Hand During Time of Need
T
he National Multiple Sclerosis related to participation in a clinical
Society can assist people with a trial. medical bills, or any other
confirmed diagnosis of multiple expenses not deemed “emergency
sclerosis who reside in the Northern assistance.”
California Chapter and who have a
Last year, 31 individuals with MS
critical need that cannot be met
-The National
were awardedMultiple Sclerosis
subsidies Society
to assist them
through their own or community
through crisis situations. A woman
resources.
from Alameda County wrote these
With a phone call to the MS words of thanks, “I know you worked
Society we will take your application hard to save my home and you saved it.
and help you examine potential Words can’t describe my gratitude that
community resources to the MS Society is here.” More
fill your need. To receive letters came
financial assistance from San
from the Chapter we Francisco,
will request verification “I can
of diagnosis and breath a
documentation of need. little
The Multiple Sclerosis easier
Society will attempt to now,” and
make a decision on from
your request within Oakland, “Before
48 hours. talking to you, I had
Covered ex- no where to turn.”
penses include basic If you need help
needs such as food, getting back on your feet and
shelter, utilities and assistance moving toward
under certain self-sufficiency and independence, con-
conditions, prescriptions/ tact RoseMarie Johnson at
medications. Limited transportation to
1-800-FIGHT MS. This fiscal year the
medical appointments or chapter
Chapter allocated $20,000 for the
programs are also covered. Excluded
Emergency Assistance Program.
are ongoing personal care, travel
18 2000 #1 Toll-Free Number: 1-800-FIGHT MST H E N A T I O N A L M S S O C I E T Y
Be Aware of Sound-alike Organizations
A
t the National Multiple ter and a services brochure. Once you
Sclerosis Society, we encourage receive this information, you then are
the public to learn about non- ready to make an informed choice about
profit organizations before giving. You sending a donation to the organization
work hard for your money and are un- that approached you through a direct
derstandably concerned that your con- mail appeal or a telemarketing appeal.
tribution be used wisely. Before mak-
While we can’t speak about what
ing a contribution to any group, check
other agencies do, we can tell you about
its reputation with the Better Business
our organization. The National Multiple
Bureau and the state Attorney General.
Sclerosis Society was founded in 1946.
You will find their numbers on the fol-
Over 80% of funds raised in northern
lowing page, which also lists questions
California go to directly support our
to ask whenever you’ve approached for
mission: to end the devastating effects of
a donation.
multiple sclerosis. The Society spends
“Sound-alike” organizations such more money on MS research than any
as The Multiple Sclerosis Association national voluntary health agency in the
and the Multiple Sclerosis Foundation, world; and is the only MS organization
are not affiliated with the National that meets the standards of all major
Multiple Sclerosis Society. If agencies that rate nonprofit groups. You
approached by either of these can learn more about us by calling
organizations, we suggest asking 1-800-FIGHT MS and requesting a copy
questions about the services they offer of our annual report.
and the research they are doing. Ask to For questions to ask sound-alike organiza-
see a copy of their most recent newslet- tions, please see the following page . . .
Visit Our Website: www.msconnection.org MS Connection 19Continued from the previous page . . .
Ask These Questions Whenever You’re Asked For a Donation . . .
We’ve filled in the answers for the Northern California Chapter of the NMSS.
1. Is your group an approved 501(c)3? ✔ YES—To confirm this call the
✔ YES –Request a copy of our IRS National Health Council at (202)
certificate by calling 1-800- 785-3910.
FIGHT MS.
7. Is your financial report audited and
2. What percent of the funds you raise can I receive a copy free?
are used to provide programs and ✔ YES—Simply call 1-800-FIGHT
services? MS.
✔ OVER 80%—Call 1-800-FIGHT
MS and ask for a copy of our 8. What is your reputation with the
annual report. Better Business Bureau?
✔ EXCELLENT—To confirm this
3. Are any of these programs or services call the Better Business Bureau’s
available locally? Philanthropic Advisory Service at
✔ YES—In addition to our national (703) 276-0100. Your local Better
programs and our international Business Bureau can be reached
research effort, we provide many at (510) 238-1000, (650) 696-
free services for people with MS 1240, or (408) 278-7400.
throughout northern California.
Call 1-800-FIGHT MS and ask 9. If not a totally volunteer organiza-
for our free Programs Guide. tion, do you have a federal employer
ID number?
4. What percent of the funds you raise ✔ YES—the number is 94-1294935
got to fundraising and administra-
tive costs? 10. Do you have a board of directors
✔ UNDER 20%—See our annual and are these people prominent local
report for more details. citizens?
✔ YES—See our annual report for
5. Is your group recognized by and does more details.
it report to, the National Charities
Information Bureau? 11. Are you registered with the state
✔ YES—To confirm this call them Attorney General to raise funds in
at (212) 929-6300. California?
✔ YES—To confirm this call the
6. Is it a member of the National California Attorney General’s
Health Council or any other nation- Registry of Charitable Trusts at
ally recognized organization? (916) 445-2021.
20 2000 #1 Toll-Free Number: 1-800-FIGHT MSC H A P T E R V O L U N T E E R S
Volunteering Benefits Everyone
by Bea Downs timers." When a newly diagnosed person
or one who is seeking understanding of a
I
am a volunteer. Helping others gives disease they've had for years attends for
me a sense of pride and a the first time, it is gratifying when the
feeling of accomplishment. In ad- group is told, "You've helped me so much
dition to being a resource person for by listening."
The Society's Gov-
the MS Read-a-Thon Pro- ernment Relations
gram, I'm a facilitator for Committee investi-
a self-help group, and a gates issues com-
member of the Society's ing before the leg-
Government Relations islators of both
Committee and the Action state and national
Alert team. I also handle government. The
registrations at MS Walks Action Alert pro-
and Bike Tours, which gram notifies mem-
gives me a chance to bers of upcoming
thank the people who are disability-related
helping in the fight. Bea with Information and Referral issues needing a
The Read-a-Thon Coordinator, Katie Russell. letter-writing cam-
program encourages stu- paign. It is reward-
dents to obtain pledges and read as many ing to see a bill the
books as possible. The Society provides Society has supported passed.
a speaker who explains what MS is and On a personal advocacy level, I've
then I explain what it's like to have MS. notified businesses about disability ac-
When the children ask questions, it's al- cess issues. When I write, I attempt to
ways surprising how insightful they are! identify the concern and offer reasonable
I usually use a walker at these programs suggestions for a solution. Using this ap-
and as I walk back to my car, many of proach for handicapped parking, I was
the children hold doors open and ask me able to get a local medical center to add
if I need any help. It's great to see how more spaces, a local shopping mall to cre-
aware the children are of the limitations ate better access to crosswalks and curb
of the disabled. cuts, and a city library to relocate spaces
As a facilitator for the Danville MS and even add more. It's encouraging how
Self-Help Group, I'm often amazed at the cooperative people can be when accessi-
MS information the members bring to bility shortcomings are brought to their
share at our meetings. We discuss ev- attention. One voice can be heard.
erything from the A-B-C drugs to alter-
native methods. The members are a
great source of comfort and empathy for
all that attend, especially for the "first -
Visit Our Website: www.msconnection.org MS Connection 21O N L I N E W I T H B I L L L I N D
Get the Message and Get Online
A
whole world of information, E-mail Bill Lind at
entertainment, communication blind@silcon.com
and business is available to you
on the Internet. If you haven’t already events, news,
connected to the Internet, then make a staff volunteer
New Year’s resolution to do so soon. opportunities,
Give yourself access to the world of donations,
tomorrow that is available at your connections to
fingertips today. chat rooms, a
If you have a computer, but message
haven’t yet connected it to the phone board and easy connection to over 130
system, then do so with an Internet other locations on the Internet which
Service Provider (ISP). Many providers contain information that could be of
like America Online, Prodigy, Earthlink interest to people with MS, their family
and more, charge between $10 to $25 a and friends.
month for unlimited usage and access to One relatively underutilized
all of their services which facilitate full feature of our web page is the Message
access to the Internet. Most ISP’s also Board. The Message Board is a bulletin
provide a free month’s trial use before a board on which you can post questions,
financial commitment is made. items or services you have for sale,
If you don’t have a computer, you encouraging remarks for others, or use-
can access the Internet at your local ful comments you would like to share.
library. The Federal Government has This is not a facility that is managed by
committed to financing the connection of the chapter staff, but one that is avail-
all libraries and schools to the Internet able to clients and serviced by clients. If
by the end of 2000. The librarian at you have not yet visited the Message
your local branch can demonstrate how Board, click on “connections” of the first
to access the Internet. screen, and then click on “Message
Once connected, be sure to visit Board” of the next screen to get there.
the Northern California Chapter’s You can ask a question or express a
Internet website at www.msconnection.org. concern and get an answer or receive
On the first screen you will find a list of encouragement from someone with the
choices you can make to explore paths same challenges and who observed your
that will provide you with a wealth of posting. Let us help each other and
useful information. You will find make regular visits to the Message
information on Chapter programs, Board. We can help and get of help from
each other.
22 2000 #1 Toll-Free Number: 1-800-FIGHT MSF U N D R A I S I N G
Mail that is Vital to Our Mission
Dear MS Society,
We received several requests in the mail for money from the
MS Society this past year. My husband and I send an annual gift and
walk in the MS Walk. We want to support the organization, but we
can’t afford to respond to every appeal. . .
M
any years ago, the Northern California Chapter decided to expand its
circle of friends and better educate the public about multiple sclerosis by
becoming involved in the National Multiple Sclerosis Society’s Direct
Mail Program.
Through this program, fund appeals are sent to members of the Chapter as
well as the general public. During last year’s Direct Mail Program, people across
Northern California learned about multiple sclerosis as a significant health
problem and were given the opportunity to be part of the cure by making a gift.
The Chapter knows that our friends will not be able to respond to every
appeal. We also know that if we demonstrate the urgency of our mission, and offer
our members and the general public the chance to support our work as often as it
is convenient for them, they will give and give generously.
The response to this program has been overwhelming. In 1999, Direct Mail
Program donors contributed almost $470,000 to support the work of the Chapter.
More important, however, is that these gifts came from 3,384 new friends and
10,121 old friends. On a national level, the program raised $18,300,000 in 1999.
The Direct Mail Program has provided the Society with unparalleled opportunity
to generate gifts from individuals, which will be this Chapter’s lifeblood in years to
come.
We can never thank all of these friends enough for their generosity. Because
they believe in the urgency of our work and have demonstrated their commitment
to ending this disease, we can all look forward to a day when multiple sclerosis is
no longer a part of our lives.
Visit Our Website: www.msconnection.org MS Connection 23F U N D R A I S I N G
Dinner of Champions
On September 1, the Northern California Chapter’s 15th annual
Dinner of Champions raised $238,000 to help fight MS. Before
hundreds of admirers at the Saint Francis Hotel in San Francisco,
San Francisco Giants pitcher, Shawn Estes gave a moving address
describing his grandfather’s battle with multiple sclerosis. Howard W.
Robin, a chapter board member and Vice President of Berlex Laboratories,
served as Chairman of the Dinner. As part of the evening’s revelries, Dick
Bright’s SRO entertained the guests.
24 2000 #1 Toll-Free Number: 1-800-FIGHT MSl t s
F U N D R A I S I N G
R e our
su Series!
o u r Bik e T
k T
eng Year f o r t he M
S
Tour du Jour:
B i
9 9
‘ A recor d B r eaki $70,000
A
ll together, our bike tour events in
1999 raised more than $840,000 for
the Northern California Chapter of the National MS
Society. The fundraising department is especially pleased to an-
nounce that 1999 was the most successful year for the Chapter
since we began producing bike events back in 1984. The Chapter
gives their most sincere thanks to all of the dedicated riders and
volunteers for working so hard to raise these funds.
Top Hat Classic:
$120,000
Sonoma Waves to Wine:
$650,000
What’s in store for 2000? Our goal at the Northern California
Chapter is to raise more than 1 million dollars from the Millennium
Bike Tour Series! If you are interested in helping us make this
happen by making calls to our top fundraisers, stuffing registration
packets or serving as a Personal Power Source, please contact Kim
at 1-800-FIGHT MS.
Visit Our Website: www.msconnection.org MS Connection 25F U N D R A I S I N G
Tea Time!
Above: Actress Leila Kenzle (center), with
Chapter President, Julie Thomas (right) and
choreographer, Jane Kellam (left).
Left and below: WAMS
models show off the latest
in GAP wear.
On October 19, 1999, actress Leila
Kenzle, best known for her role as Fran on
“Mad About You” addressed a crowd of 200
at the Chapter’s second Women Against MS
Fashion Show and Tea. Leila spoke
movingly about how her sister copes with
To find out about
MS, sharing stories that brought laughter next year’s
and tears to the audience. Women Against MS
With choreography and direction by event call
WAMS committee members, Kim Scheuer, 1-800-FIGHT MS.
Jane Kellam and Candace Miyahira, NMSS
staff and volunteers joined Leila Kenzle on
the catwalk, modeling the latest in casual
wear. Wells Fargo Private Client Services
served as Title Sponsor of the event, which
included an English tea and a fashion show
featuring clothing from The Gap. Present-
ing Sponsor, Berlex Laboratories and Sup-
porting Sponsors, Chiron Corporation and
See’s Candies, also contributed to the suc-
cess of the event, which raised over $45,000.
26 2000 #1 Toll-Free Number: 1-800-FIGHT MSWarm up for the Walk!
egister now for MS Walk 2000!
R Spring is coming
and with it the weekend
when communities across
America unite to fight MS. For our 12th
anniversary, we’re offering 10 MS Walk
sites throughout northern California.
On April 8 and 9, join walkers in your
area to make a difference.
Name: __________________________
Address: ________________________
City: ___________________________
State: _____ Zip: _______________
Home Phone: ( ____ ) _____________
Work Phone: ( ____ ) _____________
Date of Birth: ____ /____ /_________
Above top: Senior Development
Walk Site:
Manager, Nichol Simpson-Montfort
introduces actress, Leila Kenzle. ❒ Alameda ❒ San Francisco
❒ Burlingame ❒ Santa Rosa
Above: Director of Development, ❒ Fairfield ❒ Ukiah
Mary Lou Torre struts her stuff in a ❒ Fremont ❒ Walnut Creek
pair of GAP jeans.
❒ Tiburon ❒ Weaverville
Below: Development Manager,
Maggie Hansing. ❒ I am walking with a team. Team
name: _________________ Team
captain: ________________
❒ Please send me ____ brochures and
____ posters to distribute.
❒ I’d like to volunteer.
Fill out this form and mail it to
Northern California Chapter NMSS
150 Grand Ave., Oakland, CA 94612
Fax (510) 268-0575, or call
✁
1-800-FIGHT MS ! ■
Visit Our Website: www.msconnection.org MS Connection 27S E L F - H E L P G R O U P S
The Northern California
Chapter sponsors the Alameda
following self-help
groups for people with Alameda: Oakland:
MS and their loved ones. Newly-Diagnosed East Bay Inject-ABLES
The groups meet Group Kathy 925-672-4828
regularly for emotional Jeannette 510-865-8355 Call for information.
support and educational First Wednesday, 7 PM.
purposes. For Oakland Lesbian Group
Berkeley
information on a specific Theresa 510-741-8126
Barbara 510-482-0266
group, call the contact Third Saturday, 10 AM.
First Tuesday, 6:30 PM.
person listed here. Self-
help groups are listed by Berkeley Oakland
county. We also have a Toni 510-653-4534 Minimal Symptoms
Phone Buddy program Meets periodically.
for those who prefer one- Rick (510) 521-2436
on one contact. To learn Fremont Third Monday, 6:30 PM.
about other groups in Gerry 510-744-0763
your community, or for Mary 510-537-8026
Second Saturday, 12 PM. Oakland
information on the many Significant Others
emotional support Hayward Suzanne 510-794-2121
options available Pamela 1-888-946-3876 x3 x4140
through the National MS Last Tuesday, 7 PM. Second Saturday 10:30
Society, call Carol at 1- AM.
800-FIGHT MS. Oakland
Gaby 510-597-0265 Oakland
1st & 3rd Thurs., 3:30 PM. Weekend Group
Jeannette 510-865-8355
First Saturday 12 noon.
Pleasanton
Mary Beth 925-829-0832
Second Saturday, 10 AM.
28 2000 #1 Toll-Free Number: 1-800-FIGHT MSContra Costa Lake
Antioch Clearlake
Lee 925-706-9422 Glen & Nancy San Mateo
Third Monday, 7 PM. 707-994-4271
San Carlos
Third Wednesday, 3 PM.
Brentwood Mike 650-368-7619
Jacqueline Third Tuesday, 10 AM.
925-516-0115 Marin San Mateo
Second Monday, 10 AM. Bob & Eleanor
Kentfield 650-588-0759
Concord Judy 415-897-6895 2nd & 4th Tuesday, 7 PM.
John 925-372-0859 Third Tuesday, 7:30 PM.
Shirley 925-685-0961
Second Saturday, 1 PM.
Solano
Mendocino
Vacaville
Ukiah Dacia 707-678-6131
Danville Warren 707-462-1834
Bea 925-556-9947 Second Saturday, 10
Second Tuesday, 7 PM. AM.
Fourth Saturday, 10 AM.
Willits Vallejo
Rossmoor Ken 707-456-1259 Marian 707-745-9333
Al 925-935-9531 Meets periodically. Pam 707-745-3704
Second Wednesday, 10 Second Tuesday, 6:30
AM. PM.
Napa
Napa Sonoma
Del Norte Neil 707-255-8235 Rohnert Park
Meets quarterly. Dara 707-664-1586
Crescent City Second Saturday, 1 PM.
Kay 707-464-2640 San Francisco Santa Rosa
Call for information. San Francisco Carol 707-575-4757
Lynn 415-282-2160 Third Tuesday, 7 PM.
Dolores 415-467-6186
Humboldt Second Thursday, 7 PM.
Eureka Potluck Luncheon
Patty 707-826-1220 Karen 415-584-6115
Fourth Saturday, 11 Call for information.
AM.
Visit Our Website: www.msconnection.org MS Connection 29C L A S S I F I E D S
For Sale and Service Invacare Power Wheelchair: With
85 Ford F150 Econoline Van: With reclining system, microcomputer con-
newly rebuilt engine and wheelchair lift. trols, J-cushion. Orig. $14,000. Asking
Includes new tires and windshield, CD $2,500 or best offer. Judy: 707-763-8052
AM/FM stereo, and wheel chair tie- (home) or 415-899-3725 (work).
downs. Needs some work. 145K miles. Laminated ID Cards: Ensure you’re
Offer also includes power wheelchair safe with a tag identifying your medical
with new batteries. Asking price, $2,800. condition. Wear anywhere. $10. Karen:
Call Elena at 650-755-4824. 707-545-9974.
90 Ford F150 Econoline Van: With
side door Rincon lift. Excellent condition Service: Breath Therapist-diagnosed
mechanically, like new inside and out. with MS-is studying effects of breathing
51K miles. Was $42,000, but asking technique for others with MS. Special
$13,000. Call Sandie 510-537-8810. low-cost private and group sessions avail-
able in San Francisco. Call Morgause
91 Geo Prism: With hand controls. Good Abheeti at 415-775-6145, ext. 7.
Condition. 33K miles. $5000. Jeff: 925-
803-4993. Need Equipment? Try the Chapter’s
loan closet and financial assistance pro-
Guardian Hydraulic Tub Lift: 4 years
grams. Contact Rosemarie: 1-800-FIGHT
old. Works great. $200. John: 925-798-
MS, or rosemarie.johnson@can.nmss.org.
9844.
Ads are free to chapter members. Call 1-800-FIGHT MS.
Local Clinical Trials
While the medical and physical manifestations of MS are well understood, less is
known about how MS inpacts people in terms of emotions, relationships, work and
many other areas. Researchers at the UCSF/Mt. Zion Multiple Sclerosis
Center are conducting a study, funded by the NMSS, to learn more about
the experiences of people living with MS. Participation in the study involves
a brief interview, a brief assessment of cognitive functioning, and completion of
several study questionaires (see pages 13-15 for more details). For convenience,
interviews can be conducted at the MS Center or in your own home. For additional
information about the study, contact Dr. Arne Boudewyn at the UCSF/Mt. Zion
Multiple Sclerosis Center at 415-353-7461.
The UCSF/Mt. Zion Multiple Sclerosis Center is conducting a 18 month clinical
trial of mitoxantrone (Novantrone) in primary progressive MS patients. This study
began in June 1999 and will run through December of 2000. Mitoxantrone is a
potentially appealing treatment for primary progressive MS because it is proven to
be well-tolerated and effective in secondary progressive MS. If you are interested in
being a participant in this trial, please contact Jerome Stone at 415-885-3645.
30 2000 #1 Toll-Free Number: 1-800-FIGHT MSYou can also read
