living with mg



living with mg
January - March 2013
1000 John R, Suite 111
Troy, MI 48083
(247) 591-4419
(800) 227-1763
[email protected]
•Living with MG
•News For You &
Calendard of Events
•MG and
•Support Group
If you met Leanne Hosking, you’d probably never guess she is battling a
neuromuscular disease. She is a lively 32 year old woman who works full-time,
exercises daily, and enjoys traveling the world. But this wasn’t the case three
years ago when she suffered from severe muscle weakness and fatigue. She
couldn’t drive at night and found it difficult to complete everyday tasks like getting
dressed and brushing her teeth. She battled double vision and scarily navigated
her way through immigration in Germany with one eye covered because she
refused to cancel a preplanned European vacation.
She was diagnosed with Myasthenia Gravis at the age of 29 after suffering from
noticeable muscle weakness in her arms. Shortly after diagnosis, she was
referred to have a thymectomy, for which she sought Dr. Mark Orringer, thoracic
surgeon at the University of Michigan Health System. Dr. Orringer referred her to
neurologist Dr. James Teener for plasma exchange in preparation for the surgical
removal of her thymus gland. The actual surgery presented no major problems
for her physically, but she still has not achieved remission of symptoms as hoped.
She is still under the care of Dr. Teener at U of M with her current course of
treatment including two oral medications, CellCept and Mestinon, and biweekly
plasmapheresis treatments.
Leanne works as a deputy court clerk at the District Court in Harper Woods.
Luckily, she has a very supportive team of coworkers that permits her to receive
plasmapheresis during work hours at the U of M Hospital in Ann Arbor. On her
current treatment plan, Leanne’s strength has stabilized and she has resumed
her normal activities. Leanne loves riding her bike and averages about 60 miles
a week in the summer. In addition to biking, she plays tennis, dances, and weight
trains all to combat her fatigue and prevent muscle atrophy.
Since her diagnosis and surgery, she has traveled to Florida, Hawaii, and the
Dominican Republic, as she finds the warm weather to be a favorable environment
for her physical strength and well-being. Leanne copes with the physical and
mental challenges this rare disease presents with the help of her amazing support
system of family, friends, and fellow MG patients.
Thanks to the suggestion of the
Gagnon Family, MGA found new office
space in Troy. The Gagnon’s daughter,
Debbie, is employed by the landlord,
Tony DiMambro, Fleet Enterprise.
Debbie suggested that MGA contact
Mr. DiMambro and the rest as they
say is history. Our office is scaled
down, a little crowded, but doing fine. MGA’s part-time
accountant, Mary Pat Horton deserves big thanks for
helping with this overwhelming move. Also Philip and
Karen Brewster for helping with the packing. And, Dick
Giba, your hardworking president, spent an entire day
helping to purge and pack the office. Come and visit
the new office. Call ahead so that we can put on the
Thank you for your great support. The Holiday appeal
realized approximately a 10% increase in donations
over last year. We cannot thank you enough for this
great support. This helped MGA pay for our moving
expenses as well as some of the office operations –
installation of the phone, computers etc. ALL OF YOU
MGA is looking for volunteers to help develop a network
of Social Media. We would like to develop Facebook
and Twitter accounts to benefit our membership
and others. The intent is to get the word out about
myasthenia gravis and especially our events. At the
present time we are in contact with our members
via ‘broadcast emails”, regular mail and the phone.
However, it would be very useful if MGA could also
develop the “new” social media to maintain contact
with our younger members and also newspapers, TV
stations, radio stations, etc. If you can help please
contact the office – (248) 591-4419 or [email protected]
If you or anyone in your family is in the market for a
new vehicle and plan on trading in your current vehicle,
please consider donating your “old” vehicle to Charity
Motors. Give them MGA’s name, address, phone and
we will get the market price proceeds from the sale
of your vehicle. You will also get a tax deduction .The
phone number for Charity Motors, (313) 255-1000.
They are a trustworthy organization.
The United Way for Southeastern Michigan will soon
begin their campaign to raise funds for their projects/
programs. If your company or agency conducts a
work-place campaign for United Way, please designate
MGA as a recipient for your donation. United Way will
send those designated monies to MGA. Thank you.
MGA has been offered the opportunity to engage in an
Art Program for members, their family and friends. Kate
Sullivan, an MGA member and wife of Don Sullivan,
who has MG. Kate is volunteering her time to meet with
those who would be interested in participating in an
afternoon or evening of art. The only costs would be
your time and materials. The purpose of the program
is to provide an opportunity to identify and explore
concerns related to living with the diagnosis of MG.
Kate is an experienced Art teacher and promises that
this program would be time well-spent and fun too!
Sign-up today by calling the office (248) 591-4419 or
email [email protected] Time and place will
be determined by the number of people signing-up
and their geographic location.
Mr Hepner celebrated his 90th birthday on January 7,
2013. Happy Birthday from all of the MGA family and
staff. Mr. Hepner is an engineer by training/schooling.
He has served as an expert witness in the investigation
of malfunctions in large mechanical products. He used
to fly his own airplane across the state to testify at court
hearings. He and his wife, Jean have been married for
11 years. Both were widowed and have known each
other for over 50 years with Jean Hepner having been a
sorority sister of Neal’s first wife. He was diagnosed with
MG over 10 year’s ago.Mr. Hepner has two daughters,
one is a cardiologist and the other is a business owner
in Medina, Ohio. Congratulations, Neal!
MGA NEWSLETTER • January - March 2013
These two events raise most of the funds that we require to maintain our Patient Services program.
Saturday, May 4, 2013
Lake St. Clair Metropark in Harrison Township
We need help with:
- Set up and clean up.
- Registration table – includes giving out “bib
numbers” and race packets to each participant.
- Teams of 2-4 (with signs) to “cheer” the runners
along the route.
- Hand out the T-shirts to the runners/walkers
- Picture taking at the event – MGA will supply
the instamatic cameras.
- Distribute Food/Fruit donations.
**We need golfers! Our goal this year is to have 100**
We need volunteers for the day of the event:
- Set-up and clean up
- Registration table – includes selling raffle tickets
- Golf hole spotters- especially at the Hole-InOne Golf hole and the “Cookie Hole”.
1)Gift baskets to be raffled - You can make your
own or purchase them ready-made.
2) Prizes to be part of the raffle – such as gift
cards from Starbuck’s, grocery stores, theatres,
department stores, etc. The more prizes the better.
3)If you have contact with a “special/known
celebrity” that would join MGA at our event,
that would be great!
4)A major sponsor or two to help underwrite the
major expenses of this fun event, ie., t-shirts,
golf hats, golf paraphernalia, trophies.
Donation of raffle prizes – such as gift cards from
various establishments, restaurants, beauty salons,
theatre tickets, etc. Call the MGA office (248) 591-4419
or e-mail us at [email protected] and we will
provide additional flyers with verification of our 501©3
status for donations.
Friday, August 2, 2013
Tanglewood Golf Club in South Lyon
Please call the office at (248) 591-4419 or email at
[email protected] for more information or
with questions.
OCTOBER 6, 2013
The Symposium will be held on Sunday, October 6, 2013 at
the Inn at St. John’s, Plymouth. It is a served lunch followed
by a brief business meeting and presentation by a noted
speaker. This year we are very pleased to have as our
presenter Dr. Noel Rose. Dr. Rose is the Director of Johns
Hopkins Center for Autoimmune Disease Research at Johns
Hopkins University in Baltimore, Maryland. His program
includes doing research on Myasthenia Gravis. You will not
want to miss this presentation. Mark your calendars now.
Invitations will be sent in late August.
MGA has tribute cards for sale. They are 5 for $25.00. These
can used for acknowledging birthdays, anniversaries,
special events and memorials. MGA has several members
who purchase these regularly. Call or email the office to
have some mailed to you.
MGA NEWSLETTER • January - March 2013
Please consider the Myasthenia Gravis
Association when doing your Will. We
know that almost everyone has family
to consider when doing a Will. However,
you may also want to leave something
to MGA in perpetuity. This would insure
the continuation of MGA’s, services for
future persons diagnosed with MG. Also
consider pledging a monthly amount to
MGA. We have one member who has
pledged $100 per month to help with
the office lease. Something to consider!
14th Annual MGA Walk/Run – Saturday, May 4, 2013
Lake St. Clair Metro Park, 31300 Metropolitan Parkway, Harrison Township, MI
Time – Registration for all from 8:00 - 8:45 a.m.
Start Time – 5K - 9:00 a.m. and 1 Mile Walk/Run - 9:15 a.m.
Pre-registration by phone or mail to the MGA office
On-line registration at
Cost: Pre-registration - $20
Registration on Race Day - $25
Fun-Walk-Run - $15
20th Annual MGA Golf Classic – Friday, August 2, 2013
Tanglewood Golf Club, South Lyon, MI
Scramble Play – 18 Holes of Golf - Tee-Off time – 9:00 a.m.
Includes – Box lunch & dinner
Cost: $125.00 per person
Golf Raffle – Prizes include:
Delta Airline $800 gift card,
Golf and room accommodations at Bay Harbor Inn, Petosky, MI.
$500 cash.
****Raffle Tickets are: 3 for $25, 6 for $50, 14 for $100.****
SOSIN EDUCATION SYMPOSIUM – Sunday, October 6, 2013
Program – Dr. Noel Rose, Director, Center for Autoimmune Disease Research, Johns
Hopkins University, School of Public Health, Baltimore, Maryland
Inn at St. Johns, Plymouth, MI.
Cost - $35.00 per person – Plated Lunch at Noon
Plan on attending this very exciting program.
MGA NEWSLETTER • January - March 2013
by Michelle Dulashaw, MGA Medical and Social Support Specialist
Myasthenia Gravis (MG) is an autoimmune
disease that affects the voluntary muscles in
the body. When Mestinon (Pyridostigmine) isn’t
enough to help keep the symptoms of MG under
control, immunosuppressants are drugs that are
commonly prescribed and have shown to be
Azathioprine (Imuran) is one of the “longterm” immunosuppressants used to treat MG.
Improvement with Imuran is not immediate. It can
take three months to a year before a patient may
see improvement in muscle strength.
Mycophenolate mofetil (CellCept) is the final
“long-term” immunosuppressant commonly
Immunosuppressants are drugs that suppress prescribed by our doctors at the MG Treatment
the immune system. These medicines work Center. It is believed that CellCept may work faster
in MG by changing the normal action of the and have fewer side effects than the other drugs
immune system and limiting the production in its class (Cyclosporine and Imuran). It still may
of antibodies. The antibodies associated with take three to six months to show any improvement
MG destroy the receptor sites on the muscles. in strength.
When there are fewer antibodies to destroy the
receptor sites, muscles are stronger. There are With CellCept and Imuran, you MUST have the lab
three immunosuppressants that the doctors in our work ordered by your physician done in the time
Myasthenia Gravis Treatment Center prescribe periods that they dictate and take the medicine as
prescribed by the physician. The biggest concern
with these meds is to follow the condition of the
Prednisone is a man-made medicine that liver, blood and pancreas.
resembles the natural corticosteroid produced by
the adrenal glands. This medicine also acts as an Immunosuppressant drugs may lower your
anti-inflammatory as it does in treatment of other ability to fight infection. It is very important to
illnesses. It is not as fast acting as a cholinesterase tell all physicians who have a hand in your care
inhibitor such as Mestinon, but it is the fastest what medicines you are on at all times, including
acting immunosuppressant. High doses of anything over the counter. Prepare a list of
corticosteroids are not meant to be taken long medications to carry with you at all times. Whether
term due to the side-effects that can occur with it is a podiatrist (foot doctor) or a dentist, let them
long term usage. The idea with using high doses know what you are taking!
of these drugs for MG is to get symptoms under
control and slowly get a patient off the medicine
or on a small and safer dose. It is essential that NOTE: Written with permission from the Western
patients taking high doses of prednisone advise Pennsylvania Myasthenia Gravis Association
their primary care physicians. Some of the
biggest concerns with high dose prednisone are
the increase of blood sugar levels & high blood
When patients are unable to wean off prednisone
or titrate down to a low dosage, the doctor may
consider switching the patient to a “long-term”
MGA NEWSLETTER • January - March 2013
Jerry and Mike Burt’s_50th Anniversary
From: Mary and Roy Dirkes
Alana’s Bat Mitzvah - Mr. and Mrs. Norman Ordower’s Granddaughter
From: Janet Adelson
Jacqueline Walker’s 50th Birthday – May God Bless You!
From: Ruby Shaw, John Walker and all your wonderful family and friends.
MGA Staff
Toni Patrick Leonard – Mother of Mr. and Mrs.
Mickey Patrick
From: Steve and Faye Adelson
Joseph Goldberg – Father of Howard
Goldberg and Family
From: Steven, Faye, Sari and Ivan Adelson
Carolyn Prouse – Mother of Mrs. Edelstein
From: Janet Adelson
Scott Goth – Husband of Mrs. Donna Goth
From: Steven, Faye, Sari and Ivan Adelson
Roland Seffern – Father of Noreen Gasparetto
From: Chris and Audra Herman, Judy Karle, and
St Lucy’s Parish Council
Marta Kilp
From: Waldemar and Hedwig
Holz, Mark and Denise Mansueto,
Kenneth and Therese Wolicki, and
Ingrid Zander
Sally Kucway
From: Julie Ellen Hoyt
Edward Barszcz
From: Audrey Barszcz and Kathleen Collins
Eternal Flame
Jean Sosin
From: Peggy and Dennis Frank, Leslie and
Joel Litoff, LaGrasso Brothers, Inc., Couzens,
Lansky, Fealk, Ellis, Roeder & Lazar, P.C.,
Carol and Chuck Valenti
Wyva Van Kirk
From: Steve, Faye, Sari and Ivan Adelson
Lorraine Hosking – Mother of Mark and
Grandmother of Leanne Hosking
From: Bruce and Karen Pease
Jean Sosin struggled with myasthenia gravis for over 50 years. She raised a loving family, was a collector of fine
glass (which was displayed at the Detroit Institute of Arts), cherished her children and grandchildren, brought
volunteers to MGA from outside the usual ranks. She put MGA in touch with those who could help MGA, and help
they did. Jean Sosin passed away in December 2012. She leaves a grand legacy as displayed through her family,
Neil Sosin, Gayle Rosenberg Justman, Matthew Sosin and all their families.
The Sosin Award was established to honor Hilbert Sosin and Jean Sosin. Hilbert predeceased Jean by many years.
However, in reviewing the history of MGA his name is prominent in our archives. He served as the accountant/auditor
for MGA and supported his wife in her struggles. MGA was fortunate to know them as volunteers and especially good
friends. Thank you, Jean and Hilbert. Please continue to watch over MGA from your heavenly home.
MGA NEWSLETTER • January - March 2013
David Alexander
Donna Anderson
Robert Andrews
Shirley Anspaugh
Mary Lou Behmlander
Jack and Frances Betteley
Joseph and Nancy Blumenthal
Edward Bohde
Philip and Karen Brewster
Helen and Fred Brown
Dr. Martin J. Brown
Rose and Walter Burniak
Mr. and Mrs. Rick Carra
Dolores Cartwright
Dennis and Belinda Castagna
Carolyn and Charles Caulk
Martin and Sally Cayley
Kay Connelly and William Chamness
Mary and Ted Ciagala
Jeanne M. Coddington
Victor and Zan Coen
Larry Croy
Gary D’Alessandro
Charles Dalgleish
Mary Dirkes
Paul Donohue
Richard E. Durkin
Stanton B. Elias, M.D.
Raina M. Ernstoff, M.D.
Donald and Janice Ferencz
Mary Ellen Flecksteiner
Carol E. Flint
Richard and Stephanie Giba
Garth and Kathy Groman
Guilford and Patricia Forbes
Otto and Helga Freitag
Mary Patricia Garr
Bruce and Joanne Godfrey
Ruth Granlund
Walid Harb, M. D.
Sheila and Gary Hatch
Dennis and Sally Henry
BettyJ. and William D. Hewitt
Lorna and Norman Holtzman
MGA NEWSLETTER • January - March 2013
David and Marjorie Horton
Mary Pat and Greg Horton
Mark and Nancy Hosking
Michael and Ellen Jaffe
Howard and Judy Kander
Carl and Marion Knisely
Gregory Kremkow
Sharon and Dennis Kreza
James and Beverly Lavey
Earle and Elaine Liss
James and Robbin Mazur
Gerald and Denise McCarty
Janice and Gregory Mendell
Mr. and Mrs. William J. Minore
Richard L. Morgan
Nora Lynn Napolitan Endowment Fund
John and Suzanne Nicholson
Kate Oberliesen
Reedal and LaVonne Ogilvie
Robert and Peggy Okray
Christina M. Pitcher
Raymond and Patricia Reske
Diane Robinson
Sal and Sue Rocca
Lynn and Harvey Rubin
Arnold Sameroff
Richard and Madalyn Shier
Dale and Diane Shomo
Abigail Skinner
Mr. and Mrs. Raymond Sliva
H. Owen and Joan Smith
Mr. and Mrs. Ronald A. Smith
Sharon and Walter Storrs, III
Donald J. Sullivan
Mr. and Mrs. William Swartz
Mary Boyer Taylor
Dr. Stephen and Paula Tepastte
Mary Lee Ventzke
Roger J. Visocchi
Jacqueline, John Walker, Ruby Shaw
Robert Weidenbach
Robert L. and Patricia A. Williams
Beverly and Jeffrey Yachnin
Philip and Karen Brewster,
Janet Gooding, Edward Kaiser,
Donald J Sullivan
Ronald David, Donald Ferencz,
Richard Giba, Jake and Dianne Jacobsen,
Matthew Sosin, and Robert Weidenbach
Dean and Lisa Ackerman,
Joseph W. Blumenthal,
Mr. and Mrs. Lewis Castagna,
Gary D’Alessandro, Otto and Helga Freitag,
Dr. and Mrs. Walid Harb, and Miller Vein
Carole Arcy, Helen and Fred Brown,
Charles F. Caulk, Molly Clinton-Steele,
Jeanne Coddington, Mary Dirkes,
Janice Friend, Amelia Gralewski,
Paul and Barbara Hornkohl, David R. Horton,
Gayle Rosenberg Justman, Lynn MacDonald,
Gerald McCarty, Reedal and LaVonne Ogilvie,
Robert L. Okray, Edward L. Rowden, Jr.,
Lynn Rubin, H. Owen and Joan Smith,
Linda Smith, Ronald and Dorothy Smith and
Jeff and Beverly Yachnin
Dorothy French, Wanda Gadamoski,
Betty and Harvey Golz, Leonora Greenhill,
Gina Gregory, Florence B. Halloran,
Dennis and Sally Henry, Betty J. Hewitt,
Ernie and Shirley Hodas, Leanne Hosking,
Mark and Nancy Hosking, Richard Jensen,
Cynthia Jones, Judy and Howard Kander,
Harold Kluck, Carl Knisely, James and
Beverly Lavey, Harry Lewnosky,
Earle P. Liss, Mary Marculewicz, James Mazur,
Kathy McCurdy, Bernard McDonald,
William and Mary Minore, Richard L. Morgan,
John and Suzanne Nicholson,
Carmen Norkiewicz, Susan Prady,
Victor Quigley, Natalie Reddick,
Raymond and Patricia Reske, Lois Rice,
Diane Robinson, D. Martin Scott,
Dale J. Shomo, Raymond and Coralie Sliva,
William and Virginia Swartz, Mary Boyer Taylor,
Sheryl Thomas, Jacqueline Walker and
Ruby Shaw, Mary Ward, Jeannette Williams,
Douglas and Joann Yam, and Leona Zyber.
Menchie’s Canton Center – Fundraiser In
Memory of Ed Barszcz
American Express Charitable Fund
Donna Anderson, Audrey Barszcz,
John Becker, Mary Lou Behmlander,
George and Barbara Brancato,
Dr. Martin Brown, Peggy Bushnell,
Rick and Nancy Carra, Richard Caste,
Mary and Ted Ciagala, Victor and Zan Coen,
Karen Costin, Larry Croy, Charles Dalgleish,
Jr., Carol Ann Flint, Reveca Foley,
MGA NEWSLETTER • January - March 2013
From Dick Giba, MGA Board President:
Some of our dedicated supporters are beginning to send in monthly donations to help level
MGA’s monthly budget requirements. We appreciate your contributions and hope that you
would consider this approach especially since all donations are tax deductible.
------------------------------------------------------------------------------------------------------------------------------OFFICIAL PLEDGE CARD FORM
You are asked to fill out and sign this Pledge Form to officially designate your gift to the The
Myasthenia Gravis Association Name­­­­­­­­­­­­­­­­­­­________________________________________________________________________
City State Zip_________________________________________________________________
Phone (H) _________________________________ (W) ______________________________
We/I hereby pledge our/my gift of $ ____________________________________ to be paid
in installments of $_____________________________ over a period of ____________ years
on ______________________ (month/day/year).
Credit cards (Visa, MasterCard and Discover) are accepted. We will track donations
and send a letter of receipt at the end of each year. Please include credit card # and
expiration date.
Credit Card # ________________________________________Expiration date: ___________
Please sign and complete form and mail to: Myasthenia Gravis Association
1000 John R, Suite 111
Troy, MI 48083
(248) 591-4419
Your continued support is greatly appreciated
MGA NEWSLETTER • January - March 2013
MGA NEWSLETTER • January - March 2013
Support Group Info
Do you need information about MG and its treatment?
Would you like to meet with others who are living with MG?
Do you have questions and concerns about coping with MG?
If you have answered YES to any of the above questions, you may be interested in
attending a New Patient Orientation Meeting or a Support Group Meeting. Please call
us if you have any questions or suggestions.
New Patient Orientation
An orientation meeting for patients and family is held in the Troy office. Staff members
and other patients will be available to answer questions. Please call ahead to let us
know if you are interested.
Metro Support Group
The Metro group meets the second Monday of the month in Jan., March, May, Sept., and
Nov. at 7:00 p.m. The group meets at Amazing Grace Lutheran Church, 29860 Dequindre
(north of 12 Mile) in Warren. For more information, please call the MGA office.
2013 Dates: Jan 14 (cancelled), Mar 11, May 13, Sep 9 & Nov 11.
Ann Arbor Support Group
The Ann Arbor Support Group meets the fourth Thursday of the month in Jan., March,
May, July, Sept., at 7:00 p.m. at St. Joseph Mercy Hospital, 5305 Elliott Dr., Ypsilanti,
MI 48197 in the Education Center, Classroom 4. From Parking Lot “P”, the entrance is
below the # 5305 on the building. Take elevator in the lobby to the second floor. Proceed
down the hallway to your left (through double doors). Just before the second double
door, turn left into narrow hallway. After passing through first door, Room # 4 is on your
right. For more information call the MGA office at 586-755-9100.
2013 Dates: Jan 24, Mar 28 (cancelled), May 23, Jul 25 & Sep 26.
Alpena Phone Network
The Alpena area has a phone network. You can talk with another person with MG by
calling Denise Tibor at 989-471-5364 or E-mail her at [email protected]
Private counseling is available at the MGA office in Troy.
Call for an appointment.
248-591-4419 OR 800-227-1763
May no Myasthenia Gravis patient
feel alone with their disease.
MGA NEWSLETTER • January - March 2013
1000 John R, Suite 111
Troy, MI 48083
Non-Profit Org.
U.S. Postage
S.C.S., MI
Permit No. 87
January - March 2013