january – february – march 2009 it was a howling – dick...

MGA NEWSLETTER • JANUARY - FEBRUARY - MARCH 2009 1

Myasthenia Gravis Association17117 West Nine MileSuite 910Southfield, MI 48075

(248) 423-9700(800) [email protected]

IN THIS ISSUE:•Bowling Fundraiser•Membership

renewal•Wanted! Free Office

Space•Email-Mail•PayPal on the WEB•Community Health

Charities•United Way•MGA Annual

Education Symposium

•Why Eyelids Get So Heavy When Tired

•Helping Kids Cope with their Immune Disorder

•In Memoriam•The Effects of Stress•Laughter: Good for

What Ails You•Cashing In•Member Profile -

Andrea Fuller•Honors and

Memorials•2009 Memberships•2008 Holiday

Appeal•Calendar of Events•Support Groups

Family and friends, about 45 people of all ages, sizes came to the first ever Bowling fundraiser at Ford Lanes in Dearborn Heights. In spite of the new snow that showered down on the roads making the streets slippery, everyone had a great time! This included the families and friends of Dick Giba, Roy Dirkes, Debbie Kent, Taylor Bleibtrey, Garth Groman, Dale Shomo, Karen Brewster & Joanne Westenberg, MGA’s administrative office assistant. A special thank you to Philip and Karen Brewster for donating all the prizes for the raffle. They also brought their family members to enjoy an afternoon of bowling. It was a Howling good time! Thank you for your support!

January – February – March 2009

Groman Family

Dirkes Family and Kent Family

Dick and Stephanie Giba with grand-daughter Amanda

Dale Shomo and Taylor Bleibtrey

Brewster Family

IT WAS A HOWLING – BOWLING GOOD TIME

2 MGA NEWSLETTER • JANUARY - FEBRUARY - MARCH 2009

MEMBERSHIP RENEWAL 2009

If you have not renewed your membership, please do so at your earliest convenience. The campaign continues throughout the month of March. If you cannot renew at the full amount, please send what you can. It will help underwrite the cost of the Newsletter. Thank you.

WANTED - FREE Professional Office Space!

MGA is looking for approximately 1100 square feet of office space. Due to the poor economy and the fact that our fundraisers are not meeting their financial goals (remember we lost $47,000 from United Way, and cut our expenses to the bare bone) we must continue to find ways to support our primary mission of Patient Services. To accommodate our Patient Services program we now must cut expenses further and look for FREE Office space. MGA provides service to all of metropolitan Detroit including Washtenaw County, Monroe and the eastern half of Michigan. The most convenient area would be Oakland or Macomb counties and near expressways. If you can help, please contact the office: (248) 423-9700. Thank you.

EMAIL – MAIL!As a member of MGA you can now

access MGA’s newsletter via Email. The office is developing a list of Email addresses for the purpose of sending you information, including the MGA quarterly newsletter. Many members are already receiving the newsletter as well as event information. Just send in your Email address and we will add you to the list. Thank you. (Those of you who have sent your email to MGA, you are already on the list).

PayPal on the WEB

Some of you have taken advantage of sending donations to MGA via the PayPal system. We thank you for your generosity. Please know that PayPal deducts a percentage of each donation for processing. For instance, if you donate $100, MGA will actually receive about $97.00. Just so you know.

Community Health Charities(CHC)

MGA is a member of Community Health Charities. This organization campaigns at various corporations and companies to raise monies for the agencies (all health related) that are their members If your company or corporation participates in the CHC campaign, please designate MGA as the agency you wish to support. Upon collecting the pledges and if MGA was designated, we will receive those funds. If you have any questions, please call the office – (248) 423-9700. (You may want to inquire through the Human Services Department or Supervisor at your place of work and ask if your employer participates in the Community Health Charities campaign).

United Way for Southeastern Michigan or Washtenaw County United Way

If your company or corporation participates in the United Way campaign, you can also designate your donation to MGA. We are told that any designations received for MGA in 2009 will be forwarded to MGA following a deduction of administrative expenses. If you have questions, call the office.


MGA ANNUAL EDUCATION SYMPOSIUM/MEETING – OCT. 11, 2009

Dr. Henry Kaminski, Chairman of Neurology and Psycharistry at St. Louis University, St. Louis, Missouri has been invited to be the presenter at the Symposium. Dr. Kaminski was formerly with the Cleveland Clinic wherein he treated many people with myasthenia gravis. We have asked Dr. Kaminski to also address the issue of research and MG. Dr. Kaminski has NOT YET confirmed his appearance for the meeting. However, mark the date on your calendar. More information to come

Why Do Our Eyelids Get So Heavy When We Are Tired?Mark A. W. Andrews, professor of physiology and director of the Independent Study Pathway at the Lake Erie college of Osteopathic Medicine, replies:Generally speaking, heaviness of the muscles around the eyes, including the levator muscles that open the upper eyelids, is similar to fatigue of any muscle of the body. Ocular and brow muscles are especially prone to fatigue because they are active for most of our waking hours. Over the course of the

day, they gradually grow leaden with extended use, as our arms and legs do.

Such a feeling may be compounded by general fatigue, including a lack of sleep or by specific muscle overuse related to long hours of focusing on, say, a computer monitor. Excess skin of the eyelid, or prolapsed fat pads underneath the eyes, make an individual more prone to this sensation. Chronic allergies and sinus infections may also exacerbate the heaviness, and sun exposure may cause eyelid swelling and thereby increase the probability that the drooping will interfere with vision.

Although heavy eyelids do not typically indicate underlying medical issues, some conditions do cause drooping eyelids, or ptosis. A stroke or a muscular disorder such as myasthenia gravis or myotonic distrophy can damage facial muscles or their nerves and cause ptosis, as can elective facial surgery or interventions such as Botox injections to the brow.

Source: Scientific American, November 2008Reprinted from MG Ontario Newsletter, February 2009

Helping Kids Cope with their Immune Disorder

“Germs Make Me Sick,” by Melvin Berger, explains with colorful illustrations how your body fights germs.

“Little Tree: A Story for Children With Serious Medical Illness,” by Joyce C. Mills, is a comforting fable for your children facing serious life challenges.

“Our Immune System,” enables children who are immune deficient and their families to explore together the immune system. Available from the Immune Deficiency Foundation at www.rimaryimmune.org.

Reprinted from MG Ontario Newsletter, February 2009

Home Remedy:

For tired eyes, take left over tea once cold. Dip 2 cotton wool balls in it and place over the eyes for 10 minutes.


In Memoriam Don Fraser, Sr.

MGA extends it sympathy to the family of Don Fraser, Sr. Don was a great and helpful friend to MGA. He attended the Support Meetings with his wife Shirley who has MG and often helped others with their questions about medications. Don was a pharmacist by training and used those skills to help others. About six years ago MGA got a call from one of our members who was expecting her second child. Her doctor was worried about her delivery and the possibility that she would need to take her Mestinon at or near delivery. However, she needed liquid Mestinon and there was none to be found anywhere. MGA contacted Don and he contacted his son, Don Jr. who owns Wabeek Pharmacy located at Beaumont Hospital. They found the liquid Mestinon and the young Mom-to-be felt secure in the fact that her medicine was close at hand. As luck would have it, she did not need to take the Mestinon. Her delivery went very well and the baby girl is now 6 years old.

Donald E. Fraser, Sr. April 22, 1917 – December 9, 2008

Donald Fraser, Sr. was 91 years old. Don loved his profession, Pharmacy, it was his passion. He retired in 1982 but continued to manage the books for Don Jr.’s Wabeek Pharmacy until four weeks prior to his passing.

Don’s beloved wife, Shirley, of 63 years was his main love. They resided in Beverly Hills, MI since 1954, where they raised 5 children and enjoyed years of square dancing, bowling, golf and cards. Don also enjoyed singing, swimming and was an avid gardner.

We wish Don’s wife Shirley and all the family our deepest sympathy. May the wonderful memories they have help them through the difficult times.

In Memoriam Arlena Anderson

Arlena Anderson passed away on February 27, 2009. MGA often assisted Arlena by providing transportation services (via Checker Cab) to go to the doctor. Arlena’s family was gracious to send her Obituary to our office for reprinting in this newsletter. It follows:

Arlena Anderson April 7, 1924 – February 21, 2009On April 7, 1924 Arlena Anderson

was born in Laurel, Mississippi to Willie Moore and Carrie Carter who preceded her in death.

Arlena was known to her family as Nita and Mrs. Jackson to her friends, graduated from high school and attended college in Mississippi. After spending time in Lima, Ohio she moved and settled in Detroit, where she met and married Matthew Anderson who preceded her in death.

Arlena confessed to Christ at an early age and never failed to give God praise for all His wonderful blessings. Arlena battled Myasthenia Gravis for 48 years, making her the longest living person with this ailment, receiving praises from her doctors until she was called home. Although her ailment made her weak, she remained a strong willed woman who never gave into her affliction or life’s hardships, she gave her all to her family.

Arlena was an avid lottery player and enjoyed playing cards with her friends.

On February 21, 2009, God called Arlena home leaving to cherish her memory, three daughters: Dorothy Barksdale, Cynthia Anderson (Ed) and Sharon Anderson, one Son, James

Anderson, one daughter-in-law, Diane Hall-Anderson, one brother, Archie B. Carter, one sister-in-law Betty McDonald and a special niece, Yvette McDonald all of Detroit. She also leaves 16 grandchildren, 13 great-grandchildren, nieces, nephews and a host of family and friends who loved her dearly.

Arlena was also preceded in death by two of her sons, Charles Lewis Jackson-EL and Raymond Anderson. She will be loved and missed by all.

REMEMBER MGA IN YOUR WILL


THE EFFECTS OF STRESS ON THE BODY

Stress can affect the body in many ways. Here are just a few:

BRAIN – May trigger behavioral and emotional problems such as anxiety and depression.

HAIR – May contribute to some forms of baldness.

MOUTH – May be associated with grinding of the teeth and mouth ulcers.

HEART – May affect heart rate and rhythm and play a role in episodes of anginal chest pain.

Source: Alt.support.arthritisReprinted from MG Ontario Newsletter, February 2009.

LAUGHTER: Good For What Ails You

A joke a day may keep the doctor away.

Every time we laugh, giggle or chuckle, we give a boost to a wide range of systems within our bodies according to the American Medical Association.

Specifically, laughter benefits health in many ways:

CONDITIONS and relaxes muscles. A hearty laugh can actually give muscles a light workout.

ENHANCES breathing. For people with chronic respiratory conditions, laughter helps clear mucus from the lungs. It also causes the lungs to expand and take in more oxygen.

IMPROVES circulation. Boisterous laughing improves circulation and

speeds delivery of oxygen and nutrients to tissues throughout the body.

HELPS fight infection. A good chuckle helps the immune system fend off colds and flu.

HEIGHTENS mental functions. Hormones that aid alertness and memory escalate with laughter.

CASHING IN

By Carol BurrisFort Wayne, Indiana

Easter afternoon I lay on my living room sofa, morosely watching

raindrops slide down the window, wondering why God would let me suffer so. Easter, a time of renewal? As an invalid, I had watched so many Easters come and go to take its message seriously anymore.

“We’ll pray for you,” my husband had said that morning before leaving for church. I had smiled weakly, nodded and dismissed his words, perhaps because I had heard that promise over and over again. Prayers seemed to have lost any meaning for me.

I wasn’t that way before I came down with myasthenia gravis, a degenerative muscle disease. Eight years earlier, I had been in my early 40s, a mother of six, active as a legal secretary, owned my own dancing school. Life was full and rich.

But myasthenia gravis soon had me in a wheelchair, depending on oxygen and emergency trips to the hospital. Often I would become unconscious and doctors would rush to our house to administer medications intravenously.

I hated to see myself in the mirror, for I had lost all my hair, and massive doses of steroids bloated my face and body. I had to catheterize myself, and I had long foregone any sense of self-esteem. Two years after my diagnosis I had surgery to remove my thymus gland. That left me feeling like an old ragged blanket.

Friends visited and, knowing that doctors felt I would not live long, awkwardly tried to say something helpful. Usually it would be “I will pray for you” as they bent down to kiss me.

I sank deep into self-pity. Each time I had a cardiac or respiratory crisis and doctors labored to bring me out of it, I wondered why. I felt like such a burden on my loved ones.

That is why Easter Sunday found me preoccupied with death instead of

Laughter Yoga clubs were started by Indian physician, Dr. Madan Kataria in 1995 with just five people. Today, the laughter movement is widely accepted and has become a global phenomenon with over 6000 clubs in 60 countries. Realizing the tremendous power of laughter and its efficacy as the best prescription for wellness, Laughter Clubs have brought smiles and laughter in the lives of many people suffering from physical and mental and emotional upsets.

Look for a Laughter Yoga club near you… there are five Laughter Yoga clubs in the MGA Detroit-eastern MI area. http://laughteryoga.org

The idea of prayers being like checks in a bank account was an odd one, but it changed a life.


CASHING IN (continued)

resurrection until something unusual happened that evening.

As I lay in the living room the doorbell rang. My husband answered it and I heard merry voices. In trooped all 12 members of our church choir.

“Carol,” said the leader, “we have come on behalf of your many church friends to share our Easter music and lift up our prayers for you.” Several men and women carried in flowers and set them up around the living room. Others placed stacks of greeting cards on the table next to me. “From all your friends,” said one. “They’re praying for you.” Then they assembled and sang “Amazing Grace,” knowing it was my favorite hymn.

Something happened in the room as they sang. I seemed to see a halo around the leader’s head, and the choir sounded like lyrical voices of angels. When they sang the “Hallelujah Chorus” from Handel’s Messiah, I was so thrilled I wanted to stand up with them.

Long after they left I relished the glorious music which still seemed to pervade the room. Then I began going through the cards, savoring the messages; all expressed prayers for me. One even enclosed a small check with a note: “Get yourself something pretty.”

How nice, I thought as I leaned back on the sofa holding the cards to my breast.

But then as evening darkened, waves of self-pity began washing over me. The choir and church friends had been so thoughtful, I brooded, and I couldn’t do a thing for them. Even the cards in my hands seemed like debts I could never repay.

I picked one up and reread it. “I pray for you every day.” I knew the writer well, an elderly woman who had

once told me there was not much else she could do in her situation but pray. “But, oh,” she had said, “how I do pray.”

I thought of her sitting in her retirement home praying for me. And then…as I looked at her card, which I knew she had traveled to the dime store to buy, an odd thought struck me.

I looked down at the other cards and saw the little green check peeking out. I could cash that gift and buy myself something, I knew, but what was I doing with this women’s gift of prayer Nothing, I realized, nothing but feeling sorry for myself. But maybe prayers are like checks, I thought. You have to “cash” them to put them to work in your life.

That Easter night I decided to start cashing in those prayers. I began by making an effort to claim them, by believing I would get well, and then doing something about it.

I remembered that almost every person the Lord healed had to do something himself. As Jesus told the restored paralytic: “Arise, take thy bed, and go…” (Matthew 9:6). If the paralytic hadn’t believed he was healed, he just would have lain there.

So I decided not to lie there. That meant rejecting the specter of self-pity that hung in the shadows. Whenever those feelings began to creep in, I would dispel them and focus on the good things in my life: my husband, my grown children, the love of friends.

The more I began banking on other peoples’ prayers, the better I began to feel emotionally. I got rid of my mental wheelchair and looked forward to the things I could still do, instead of waiting for something to happen.

Being disabled didn’t stop me from loving and caring, I decided. I was only shut in, not shut out. And, as I opened my home and heart to others, I found myself becoming more of the

happy person others wanted to be around.

I began to visit others who had become depressed because of illness. In my wheelchair, I encouraged sick people in their homes, hospitals and nursing homes. In trying to give them hope, I found a new level of existence I had not known before.

Moreover, in searching my own soul, I felt an urge to write about the many experiences in my life. In sharing lessons I learned, I found I could touch a lot of lives.

Then, amazingly, I began improving physically. Six years after my thymectomy, I went into total remission. Today, in my 50s, I continue to grow stronger daily. I am still writing and speaking, but I also do church secretarial work. Until we moved to Fort Wayne recently, I was teaching dancing again, this time in our church fellowship hall two nights a week to 80 children.

My myasthenia gravis? My last doctor’s report showed me to be clinically free of it!

Of course, I realize the time may come when I could fall ill again. But that doesn’t worry me, because I already have the victory. And so I continue to do all I can by comforting other hurting people. Yes, I’m excited about my new life and look forward to each day.

And believe me, when it comes to prayers other say for me, I cash in every one I get!

Copyright 1991 by GuidepostsAll rights reservedWEB – WWW.GUIDEPOSTS.COM


MEMBER PROFILE – ANDREA FULLER

By Sheila R. McAfee, The News Herald, Southgate

Andrea Fuller’s world has begun to right itself now, after spinning somewhat uncontrollably for the last seven years as she accepted the diagnosis of the autoimmune disease myasthenia gravis, and the affects of it on every aspect of her life. The 38-year-old Wyandotte resident has endured tremendous challenges during that time, and just in the last year has enjoyed what she said is a relative return to a “normal” life. “You learn to live within your new normal,” Fuller said. MG occurs when the immune system attacks the body’s own tissues. That attack interrupts the connection between nerves and voluntary muscles. Typically, muscles most affected are those that control movement of the eyes, face, neck and limbs. The disease is most often diagnosed in women of childbearing years and men in their 60s. Fuller said there has been no correlation found between the two age groups. Adding to the mystery is the recent increase of diagnoses in children. Fuller

experienced all the classic symptoms — fatigue, double vision, droopy eyelids — but knowing nothing about this rare disease, she attributed them to other things, among them, new motherhood and perhaps a need for glasses. Looking back, Fuller said the first symptom was the fatigue, which she noticed after the birth of her daughter, Kate, in June 2001. “The baby kept feeling heavier and heavier, and I was increasingly tired and weak,” said Fuller. “I just thought it was a lack of sleep.” Next came blurred vision. On Dec. 4, 2001, Fuller recalled how she just didn’t feel right. She attended a family gathering as planned, but left early. “I was in my kitchen, and when I turned my head to the right, the whole room started spinning,” she said, adding that one of her eyes wouldn’t open more than half way. Her “droopy eye,” or ptosis, was another symptom of the disease. The month was filled with appointments to her primary care doctor and an eye specialist, who immediately referred her to a neuroopthalmalogist at the Kresge Eye Institute. “I had no idea why he would be doing all these weird tests on my fingers and toes,” Fuller said. “When I asked him to please tell me what he thought was going on, he called my mom and my sister into the room so I had someone with me when he told me he thought I may have multiple sclerosis. “But then he suggested it could be myasthenia gravis.” A blood test confirmed the MG diagnosis, which she received the day before Christmas. At that time, she was encouraged to have her thymus gland tested. The gland, located behind the breastbone, plays a major role in the development of the body’s immune system. Two tumors in the gland were found before the dawn of the new year, and surgery was scheduled for mid-January. However, Fuller’s symptoms

escalated, and she was hospitalized as her body went into crisis mode. “I lost the ability to smile, I couldn’t eat and I couldn’t see,” Fuller said. “I was still nursing Kate, and when my mom and sister brought her to the hospital, I was unable to cry when they left. “My circumstances were the worst they can get for a patient with MG.” Fuller later learned that pregnancy and stress can trigger the onset of the disease, which has no know cause or cure. In addition to the birth of her daughter, the strange symptoms and their unknown origins, and a car accident that occurred on the way to one of her doctor’s visits, was too much for her system to handle. Surgery was successful, but during the procedure her vocal chord was nicked, resulting in paralysis on the left side. Having been in the hospital for a month, Fuller just wanted to go home, but a week after her release from the hospital, she was right back in the intensive care unit on a ventilator and feeding tube. “I thought at the time, I was done,” Fuller said. “So, I plopped a picture of my family in front of me and decided to fight.” People who suffer with MG are dubbed “snowflakes” because no two are alike, Fuller said. There may be common denominators, but each person has to try different therapies and drugs to see what works for them. Once she was stabilized and out of the hospital again, doctors prescribed a combination of drug therapies to manage her symptoms. Fuller said she thought at the time she was doing OK handling her life with the disease, but admitted that she really thought it was something that would pass. She was “well” for two years, and then the symptoms escalated again, putting her right back in the hospital. “That was really crushing for me,” she said. “Up until that point I didn’t talk about the


disease, figuring I would get over it. I came to the realization that this is my life.” Upon release, she and her doctors went through trial and error to determine new therapies and treatments. Fuller currently takes two immunosuppresent drugs daily — one of them every four to five hours. And every couple of months, she receives plasmapheresis therapy, an invasive procedure that removes abnormal antibodies from the plasma of her blood. The improvement in her muscle strength after the therapy is dramatic, but isn’t long-lasting. “I feel great for a couple of weeks after the pheresis,” said Fuller, adding that her personal prescription to complement the drug therapies has been learning how to de-stress her life. “You have to learn to listen to your body,” Fuller said. “When I feel tired I have to rest. I have learned to say no to things and realize I cannot do it all. “It can be disappointing, but you create your own normal. I know my limitations and live within them.” She also stressed how important it is to learn as much as you can about the disease. For instance, there are many drugs that can worsen or be fatal to MG patients. Fuller said many antibiotics can’t be taken. During a stay in the intensive care unit, unable to talk, she watched as a nurse hung an intravenous drip bag. Fuller wrote a note to the nurse using her daughter’s Magnadoodle writing toy, asking what was in the drip bag. “When she told me it was magnesium because my body was low, I had to tell her I could not have it,” Fuller said. “It would have killed me.” She has received an outpouring of support from family and friends. At the time of the diagnosis, her husband, David, was traveling back and forth to Ohio for work, so her mother, Kathy Galeski, and sister,

Angela Long, moved in with the couple. Friends provided dinners. “My friend of 30 years, Laurie Smith, has been great, too; she has been there and not been there for me at all the right times,” Fuller said. The course of her life since diagnosis with MG has been a journey of many sorts for Fuller, a former flight attendant who describes herself as a person who likes to “go, go, go.” “It was a huge adjustment to have to ask for help,” said Fuller. “I’m OK now with having to call someone to empty the dishwasher or put in a few loads of laundry for me.” Kate, 7, is now in second grade, and knows how to pronounce myasthenia gravis quite well, her mother said. “She is such a helper, and loves it,” said Fuller. One of the highlights of the last year for Fuller was attending her 20-year class reunion. A 1988 graduate of Southgate Anderson High School, the former Andrea Jones was nervous before the event, because no one knew about her illness, and the night would entail a lot of talking, which can tax the muscles of her mouth and freeze up her tongue. “I am so glad I went,” Fuller said. “It was an incredible feeling to be able to be there.” She also has found tremendous support from the Myasthenia Gravis Association in Southfield. MGA was started in 1962 by three women who could not find a support system following their own diagnoses. They soon found that there were many people seeking similar information and support. Representatives routinely called her and provided a great deal of helpful information, Fuller said, adding that she is a volunteer for the group. The MGA currently offers support to 950 patients throughout southeast Michigan. In the last two months, there have has been 21 new patients

calling for information about the disease. Fuller said she believes the increase is simply due to more accurate diagnoses, yet there is no research being done in Michigan, and the only research anywhere being conducted is university-based and underfunded. As a nonprofit group, MGA relies on many funding sources and recently lost $47,000 once coming from the United Way. To help make up the deficit, Fuller is chairman of an upcoming fund-raiser, “Wine tasting with Friends,” to be held next March. She needs donations for a raffle and silent auction that are part of the evening plans. Having come to terms with MG, Fuller is ready to talk about her life with the chronic disease in hope of raising awareness and increasing research. “I’ve been as bad as you can be with MG, and I want to offer hope for others who are facing life with the disease,” she said. To contact Fuller about MG, e-mail her at [email protected].

Member Profile (continued)


HONORS AND MEMORIALS

Samuel Ryshen Memorial Fund – By Ruth RyshenFrancis SilvermanRuth Ryshen

GIFTS OF HONORHarold J. BoyesH. James & Mary E. Boyes

Lisa Cantrell – Special BirthdaySteve Adelson

Mr. & Mrs. Dan Smith – Congratulations on birth of your daughterSteven Adelson

Mr. & Mrs. Gary Stanford - Congratulations on birth of your granddaughterSteven Adelson

Bob Kaplan – Special BirthdaySteven, Faye, Sari & Ivan Adelson

Florina Murdock – 50th BirthdayRuby ShawJacqueline Walker

Janet Sabo – Special BirthdayRoy and MaryAnn Dirkes

Jeff Yachnin – Special Thank YouRene Woodburn

PLANNED GIVINGAllene Schuler

MGA MAJOR DONATIONSDr. Raina M. Ernstoff

MGA SUPPORT DONATIONSJacqueline Walker

GIFTS IN MEMORY OFFather of Mr. and Mrs. Bruce AittamaSteven & Fay Adelson

Brother of Elilia BernalSteve Adelson

Sara ChabenBeverly Waterstone

George EisenbergMrs. Jerome Ash

Donald FraserShirley Fraser

Rev. Lewis C. Hunter, Whitlock Memorial Church of God in ChristJacqueline Walker

Clara McCarverJacqueline Walker

David SingerRose AlbunJane BloomChris Coetzee & Lindy HirschsohnElaine L. Eizelman, Tom Torma & FamilyMrs. Beryl J. FeinbergShirley GottliebNancy & Ken GrossSusan & Barry GrossBonnie Mark, Rebecca & David KowalskyMax & Trude LumelskyAndrea, Daid, Aly & Steven RapoportLes W. SgnilekMarilyn SteinShelah SteinShirley M. SteinJeff YachninWendy & Mark Yura

Mrs. AndreSuykerbuykJeff Yachnin


2009 MEMBERSHIP(Received as of March 9, 2009)

MGA sincerely appreciates all who renewed their membership for the new year. Some of you gave gener-ous donations along with the mem-bership fee and we thank you. Many of you renewed even though it was a hardship to do so and we sincerely appreciate your support. As some people have said, “we will get through this”! MGA is here to serve you!

Benefactor MembershipH. James & Mary BoyesE.W. KaiserMatthew & Julie Sosin

Circle of FriendsWalid A. Harb, MD.Robert Weidenbach

Contributing MembershipKaren BrewsterKen CarothersLewis CastagnaGary D’AlessandroMary DirkesPaul Donahue, M.D.Margaret DooleyRichard E. DurkinJane EverhartDonald FerenczMr. & Mrs. E. J. HartmannSheila HatchWilliam & Marian MinoreJeff & Kris MurphyReedal OgilvieLeonard & Patricia PilatoGeorge RobertsMr. & Mrs. Raymond SlivaRonald & Dorothy SmithJeff & Beverly YachninJohn P.Yorke

MembershipDonna AndersonGaston AnthonyEdward BarszczMary Lou BehmlanderJim & Nancy BennettWilliam BoothKen BrandJames & Sheila BridgetDr. Martin BrownRichard CasteMartin & Sally CayleyJeannine CecilGina ChickowskiDawn ChorbagianMary CiagalaPatrick & Julie CichorackiJeanne CoddingtonCharles DalgleishDiane M. DesmondRichard DolengaRex FergusonCarol Ann FlintShirley FraserOtto FreitagWanda GadomskiLisa GigliottiGerald GlassRuth GranlundFlorence HalloranDennis HenryLorna HoltzmanDavid R. Horton – including donationfor Support MeetingsLois JohnsonCynthia JonesDeborah KentHarold KluckCarole LaskowskiJames LaveyRobert & Cherie LevyHarry LewnoskyLynn MacDonaldAlbert MandelEdwin MaysBernard McDonald

Bess McGrawJanice MendellJohn & Mary Catherine NicholVenus PriceRaymond & Patricia ReskeLois RiceDiane RobinsonRose SamarianBetty SaputoElizabeth ScrimgerJoseph SellDale & Diane ShomoAbby SkinnerMonica SmithJames L. SparksMolly Clinton SteeleVirginia SwartzMary B. TaylorBud TeetsStephen TePastte, M.D.Alan ThompsonJoann VanHornDouglas VisocchiJacqueline WalkerMary E. WardAnn WhitworthRobert WilliamsDouglas YamVicky YarbroughWalter Zarzycki


2008 MGA HOLIDAY APPEAL(Received as of March 9, 2009)

Many thanks to the following donors who generously supported MGA. We know that many sacrificed to help maintain MGA’s services.

Alphonse BagrowskiJack & Fran BetteleyShirley BlairMr. & Mrs. Edward BohdePhilip & Karen BrewsterDr. Steven BrownRose BurniakMartin CayleyMary CiagalaJeanne M. CoddingtonMildred I. CprekAnnette CusenzaGary D’AlessandroMary DirkesRoy DirkesMargaret DooleyDr. Stanton EliasElise Freeman

Otto W. FreitagAndrea FullerRichard & Anne FullerGina GregoryJulie HansonSandra Hanson-RosenWalid & Norma HarbSheila HatchJane HoralRudolfo IacobelliRose Marie IndaRobert JohnsonHoward KanderPaula R. KaplanHarold KluckElaine LantzEarle P. LissIn Memory of Edith MacDonaldMr. & Mrs. William MinoreJacquetta NapolitanReedal OgilvieLois RiceGeorge B. Roberts

Rose SamarianAllene L. SchulerJoseph SellDale ShomoH. Owen SmithRon SmithDonald J. SullivanVirginia SwartzBud TeetsDr. Steve TePastteSheryl L. ThomaLeon ThompsonJerome J. Tomczak, Sr.J. C. TouBeverly WaterstoneAnn WhitworthThomas W. WorkunJeff & Bev Yachnin (in honor of Mr. & Mrs. R. Woodburn)Douglas & Joann YamGenevieve Zawacki

CALENDAR OF EVENTSPlease attend as many of these great events as possible. Become an active participant in your organization. You will meet “old friends” and create “new friendships”. You will have a good time and raise money for MGA patient services!

MGA Walk/Run –Saturday, May 2, 20098:30 a.m. Registration, Pre-registration $20 Dodge Park, Sterling Heights, MI

MGA 16th Annual Golf Classic – Saturday, June 20, 2009The Golf Classic will be held at the Coyote Golf Club, 28700 Milford Rd., New Hudson, Michigan. Cost: $125 per person, Dinner Only: $35

MGA Annual Education Symposium/Meeting Sunday, October 11, 2009 (Tentative)Invited Speaker - Dr. Henry Kaminski, St. Louis University


Myasthenia Gravis Association• 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 interest-ed in attending a New Patient Orientation Meeting or a Support Group Meeting. Please call us if you have any questions or suggestions.

NEW PATIENT ORIENTATIONOrientation meeting for patients and family is held in the Southfield 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 GROUPThe Metro Group meets the second Monday of the month in January, March,

May, September and November at 7:00 pm. The group meets at Amazing Grace Lutheran Church, 29860 Dequindre (north of 12 Mile) in Warren. For more infor-mation, please call the MGA office.

ANN ARBOR SUPPORT GROUPThe Ann Arbor Support Group meets the fourth Thursday of the month in

January, March, May, July and September at 7:00 PM at St. Joseph Mercy Hospital in the Exhibition Room. From Parking Lot “P”, the entrance is below the No. 5305 on the building (Education Building/also has McCauley Inn). Walk straight down the hall that you face as you enter, passing the elevators to your left. Continue a short distance and you will see double doors to the Auditorium on your left. Go past these doors. Almost immediately past the double doors, you will see a single door on your left. This is our meeting room – the Exhibition Room. Enter this room for our group. (We will also have signs pointing the way.)

ALPENA NETWORK

The Alpena area has a phone network. You can talk with another person with MG by calling Denise Tibor at 989-471-5425 or Email her at [email protected].

Please note that the Alpena phone network is primarily for residents of Northeastern Michigan. We request that members in Southeastern Michigan contact our office as their networking point. Thank you!

Private counseling is available in the MGA office in Southfield. Call for an ap-pointment at 248-423-9700.

MGA MISSION STATEMENTThe Myasthenia Gravis Association is a non-profit organization dedicated to serving the needs of people diagnosed with Myasthenia Gravis, a neuromuscular disease, through Patient Ser-vices, Education, Support Meetings that include “Best Practices,” Community Outreach, Public Awareness and Research. The purpose of these programs is to improve the quality of life of those persons affected by this neuromuscular disease, helping them manage their symptoms and return to a near normal life-style.

MGA MEMBER BENEFITS• To provide information, education, referral

and counseling to help manage the disease.• Send Patient Packets of information on

Myasthenia Gravis and related issues to newly-diagnosed persons and their families/caretakers.

• Support Groups that share “Best Practices” on managing Myasthenia Gravis.

• Create awareness about Myasthenia Gravis to the general public

• Physician Referral List• Support research into the cause, prevention

and cure of Myasthenia Gravis• Raise funds to facilitate the provision of

services, education and research

BECOME A VOLUNTEERVolunteers are always welcome. Volunteers can assist MGA by helping with the Support Groups, facilitate the meetings, provide refresh-ments etc. Help is also needed with fundraising events, participating on committees and office/clerical work. If you have a special talent, or just want to help, we welcome your assistance. Call today at (248) 423-9700 or e-mail to [email protected].

RESEARCHMGA, through its fundraising activities, provides support to research to identify the cause, preven-tion and subsequent cure of this neuromuscular disease. Monies support specific projects on Myasthenia Gravis throughout the country. Many research projects are often done at University affiliated programs. PRIVACY NOTICE: The Myasthenia Gravis Association does not sell, share

or loan our membership list or patient information with any outside company, agency, marketing firm or individual.

– Support Groups

MYASTHENIA GRAVIS ASSOCIATION17117 WEST NINE MILE ROAD, SUITE 910SOUTHFIELD, MI 48075

Non-Profit Org.U.S. Postage

PAIDRoyal Oak, MI Permit No. 77

MGA NEWSLETTERJanuary - February - March 2009

MYASTHENIA GRAVIS ASSOCIATION17117 WEST NINE MILE ROAD, SUITE 910SOUTHFIELD, MI 48075

Agnes Wisner: Executive DirectorJudy Lewis: Social WorkerMary Pat Horton: AccountantJoanne Westenberg: Office Assistant

January – February – March 2009

january – february – march 2009 it was a howling – dick...

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