May 2011 - Myasthenia Gravis Foundation of America

(HOVAK is Osage for inner strength, courage)
May 2011
June is Myasthenia Gravis
Inside this issue:
Awareness Month
Patient Support Group
Meetings Scheduled
2
OK MG Patient At3
tends Florida MG Walk
EXECUTIVE DEPARTMENT
Proclamation
WHEREAS,
WHEREAS,
WHEREAS,
WHEREAS,
Myasthenia Gravis (MG) is a rare, often misdiagnosed, autoimmune, neuromuscular disease that causes weakness of the voluntary muscles. Although controllable by
medication and other treatments, it can be fatal if untreated; and
because of its rarity (approximately 70,000 people are living with MG in the US today), many Americans are often undiagnosed; and
the Myasthenia Gravis Foundation of America, Inc. (MGFA) is a not-for-profit organization founded in 1952; and
the MGFA has a network of chapters throughout the United States whose mission is
to facilitate the timely diagnosis and optimal care of individuals affected by myasthenia gravis and to improve their lives through programs of patient services, public
information, medical research, professional education, advocacy and patient care;
Now, therefore, I, Mary Fallin, Governor of the State of Oklahoma, do hereby proclaim June
2011, as
Living Essentially
Becoming an
Empowered Patient
4
7
M/SAB Contacts Editor 8
of Neurology
What does the Medical/ 9
Scientific Advisory
Board do?
How Does Health Care
Reform Impact You?
10
Chapter Email Services 10
Donations,
Honorariums &
Memorials
11
Chapter Contact
Information
11
Mission
Statement:
“Myasthenia Gravis Awareness Month”
in the state of Oklahoma.
IN WITNESS WHEREOF, I hereunto set my hand and cause the Seal of the State of Oklahoma, to be
affixed. Done at the Capital, in the City of Oklahoma City, this 9th day of March, in the Year of Our
Lord two thousand and eleven, and of the State of Oklahoma in the one hundred and third year.
Mary Fallin
Governor
The mission of The Oklahoma Chapter of the Myasthenia Gravis Foundation of
America, Inc. is to provide
education and patient services to improve the lives of
all people affected by MG
and to promote awareness of
the disease myasthenia gravis.
Oklahoma MGFA Chapter
Patient Support Group Meetings Scheduled
No RSVP is necessary to attend the meetings. Light snacks will be provided.
Please feel free to bring a snack item to share with others.
June 5, 2011– 12:30-3:30 pm – Tulsa Support Group – Chapter Picnic in the Park – we will be celebrating ―June
as MG Awareness Month‖ with a picnic held in Lafortune Park, 61st & Yale Ave, in the Southeast Pavilion. Park in the
baseball field parking lot and enter park, we will be in the first covered picnic area on the right. To attend please RSVP
to Peggy at the OKMGF office at 918-494-4951.
June 11, 2011– 11:00 am –Oklahoma City Support Group – Chapter Picnic in the Park – we will be celebrating
―June as MG Awareness Month‖ at Camp DaKaNi, 3309 E Heffner, in the Nature Center. To attend please RSVP to
Jeanmarie Carper at 405-285-9445, Lavonne Schott at 405-947-0875 or Peggy in the OKMGF office at 918-4944951.
July 17, 2011– 2:00 pm – Oklahoma City Support Group – our speaker will be Pam Forducey, PhD who is with Integris Health. Dr. Forducey received her doctorate in counseling psychology and is board certified by the American
Board of Professional Psychology in Rehabilitation Psychology. She will be speaking on stress in chronic disease.
August 7, 2011– 2:00 pm, Classroom 1– Tulsa Support Group – Kristy Marshall, R.N with Oklahoma Blood Institute will be speaking on use of Plasmapheresis in Myasthenia Gravis.
September 11, 2011 – 2:00 pm – Oklahoma City Support Group – topic to be announced later.
November 6, 2011 –2:00 pm, Classroom 1– Tulsa Support Group – topic to be announced later.
Oklahoma City Patient Support Group meetings, unless otherwise noted, are held in the Central Oklahoma Cancer
Conference Center, at SW 44th St. & S Western Ave., which is next to Integris Southwest Medical Center. Do not enter
the Cancer Conference Center at the front doors, enter through the garden area that is to the right of the front doors, look for
our MG chapter’s red arrow signs pointing the way to our meetings.
Tulsa Patient Support Group meetings, unless otherwise noted, meet at Saint Francis Hospital, 61 & Yale Ave., in the
Education Center (on east side of the hospital. Park in the employee parking garage that is near the meeting area. Look for
our MG chapter’s red arrow signs pointing the way to our meetings.
If there is not a support group in your area consider starting one. The Chapter office can help.
Contact us at 918-494-4951 or at [email protected].
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The Oklahoma Chapter of the Myasthenia Gravis Foundation of America, Inc.
Oklahoma MG Patient Participates in MG Walk
by Jeanmarie Carper
My name is Jeanmarie Carper and I have been living with MG for 26 years. I
recently went to Florida to spend a couple of weeks with my parents and my mother-inlaw and while there, I participated in the first MG Walk. It was a fun and truly inspiring
experience and I am happy to have the opportunity to write about it and share it with
you.
The Myasthenia Gravis Foundation of America, or MGFA, launched the first
ever MG National Awareness & Fundraising Campaign on March 19th, in the MG Walk.
The campaign began in 7 cities nationwide this first half of 2011 with the expectation of
creating and launching additional walks in other cities in the 2nd half of 2011 and
throughout 2012.
My parents live about an hour from the walk that was held in the Tampa/St.
Pete area and so my dad and I got on the road Saturday morning and drove down to
the bay to check it out. When I pulled into the park and saw the big banner with MG on
it in big letters I immediately felt very excited. I sought out Marie Ronloff, the Florida Chapter director to say hello and
then I registered to walk, got my t-shirt and mingled with the crowd. About 100 fellow MGer’s, family, friends, and
caregivers signed up for the walk at the Bay location and gathered for a single cause - to raise funds and raise awareness. We even had a group of dolphins swimming just off shore! The kick off began with a song, some introductions
and some words of thanks and encouragement and then - we walked.
As we all set out together I thought about how far we have come over the years. When I was diagnosed in
1984, I had little if any information about MG when I left my doctors office. I felt that I had very little resources to aid
me with the lifelong journey I was about to begin - I had no computer at home - and certainly no internet! It was a
good ten years before I ever met anyone else with MG. Eventually, while living in Atlanta, I attended a support group
for the first time, I began receiving newsletters and other publications. Down the road I even started up a new support
group with the encouragement of my neurologist. Of course, the internet now gives me instant access to plenty of
great information. Today, I know many wonderful people with MG and I can get as much information as I want through
the National Foundation and our state Chapter resources. I felt truly inspired and thankful while walking through the
streets of St. Petersburg to everyone who worked so hard to make it happen.
I hope that will be the first of many walks and other MG events that I can be a part of. As of 2 weeks after the
walk, over $126,000 was raised! I’m sure there will plenty of updated information and pictures in the next newsletter
from National so be sure to go to the website for that if you can. If there is ever a walk or any other fundraiser in your
area, be sure to join in - you will be glad you did:)
Jeanmarie currently serves on the
Oklahoma MG Chapter Board.
The Oklahoma Chapter of the Myasthenia Gravis Foundation of America, Inc.
Page 3
Living Essentially
By Kay Northcutt, D. Min.
Living with a chronic illness is not unlike Thoreau’s experiment on Walden Pond except Thoreau chose the
constitutive limits of Walden Pond as an experiment in ―living essentially,‖ while my confinement, by stark contrast, was
unbidden. Yet living essentially is ―the” spiritual practice for those whose lives are constricted within the footpath of
home; where a journey to the backyard ―on a good day‖ becomes a sacred pilgrimage. Such is the work of Lent for all:
living essentially, discovering bits of heaven-on-earth: within.
Paradoxically enough, the freedom to choose—so central to Thoreau’s experiment—was the first liberty
stripped from me by disease. It began with difficulty swallowing and chewing, escalating into the slurring of words,
collapsing neck flexors, and gasping for breath. Three MRI’s (brain, adrenal glands, pituitary gland), four CT scans
(lungs, abdomen, heart, neck), 29 blood chemistry studies, and countless Sartre-like ―No Exit‖ interviews with specialist after specialist elicited no diagnosis. Months passed. My profession as teacher and my vocation (preaching) relied
upon the strength to speak. [Employment itself relied upon contributions to faculty endeavors, chapel, office hours
with students, and seminary functions.] But by noon each day it felt as if my muscles had been peeled from my bones:
the effort to speak a word or to smile at a student—promethean. Little by little the grid upon which I lived shrunk to
that of a postage stamp. And I kept thinking I would get better.
That was a little over two years ago, approximately the length of Thoreau’s experiment at Walden Pond.
Unlike Thoreau I cannot walk away from living essentially. My disease (despite diagnosis and vigilant physicians) is
refractory and unremitting. My sentence of ―living essentially,‖ will be that of my lifetime, rather than Thoreau’s mere
two years and two months. Lent has come to stay and living essentially has become my liturgy of hours.
Flannery O’Connor wrote that illness had taught her more ―than any trip abroad‖ (d. 1964). O’Connor pried
enticements out of daily life and made a pilgrimage of her illness. Her letters record a daily rhythm of visits from intriguingly eccentric friends and the activities of her mother’s unruly flock of chickens. Those of us circumscribed by
hearth and home cannot help but smile at this kindred spirit. Whether one’s marginalization is that of choice or lack
thereof, the beating pulse of life rests upon rare, cherished visits from friends and the mundane delights of earth and
its creatures.
Words, too, are a common bond. Earlier, Emily Dickinson had detailed her
mother’s chickens in letters to her beloved brother Austin. Dickinson’s poems are parables in living essentially (d. 1886). She managed to compress even a prairie into five
words: ―A clover, one bee. And revery.‖ Dickinson chose a life of enclosure in which
New England’s landscape and words proved her most cherished companions. I, too,
strain to express the bitter and sweet in a life negotiated from the margins:
Typically, winter arrives with the lament of having ―missed another fall,"
but this fall I did not fail to notice a single leaf's coloration or passing. In case this fall
To make a prairie
(1755)
by Emily Dickinson
To make a prairie it takes a
clover and one bee,
And revery.
The revery alone will do,
If bees are few.
was to have been my last--I rest contentedly with the knowledge that I fully loved and
admired every moment of it.
Continued on next page
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The Oklahoma Chapter of the Myasthenia Gravis Foundation of America, Inc.
Late afternoons found me alone in the backyard underneath my mighty oak tree, the west sun on my back, paying attention to the hymning of the cicadas, noting the date the last surviving choir member folded up his legs for winter. I marked the final evening the robin sang her twilight song for me before heading south, and observed a day of
mourning when the last hummingbird disappeared. Rinsing off the feeder, sticky with nectar, I lovingly tucked it onto my
potting shelf wondering what day next spring would prove sunny enough to warrant its return to my front garden.
One day this fall I ran my sprinkler at full tilt for the thirsty monarchs as they made their way through Tulsa, migrating to Mexico. And yesterday I drove my car (in my driveway) where buckets full of hackberries had fallen. They
sounded like small bombs going off as I drove slowly over them, forward, then backward; forward, then backward again,
laughing till my eyes were damp with tears. It was less than a half a mile (round-trip), but I felt as if I’d been to another
continent. Small indulgences. Brief pilgrimages.
Solitude (who, though silent, is not without voice) is the master architect of living essentially, especially for
those who spend entire days pinned to our beds. Solitude provides moment-by-moment instruction on how to spend
such days well; unceasingly caring for the bed-bound who are soothed by her ways.
But for each day of solitude’s consolations, there are other days in which the pilgrimage, rather than to the garden, is to the phlebotomist for the four hundred and ninety-fifth blood draw or to the neurologist for the next revelation of
gloom, or to the hospital. This past year’s two surgeries, four hospitalizations, ambulance rides, drug reactions, medical
complications, MRIs, CTs, and applications for disability brought literally hundreds of pages of bills and untold hours in
voice jail waiting to speak to billing agencies (for the hospitals, anesthesiologists, surgeons, radiologists, laboratories,
ambulances, etc.), attempting to solve the mysterium tremendum of insurance perversities.
The bitterest grief of my Walden is the terrifying dependence upon others for every aspect of my well-being.
This past calendar year I drove my car a total of eight miles. Healthy, I clocked over ten thousand miles annually. It
feels a cruel irony that we who are disabled miss ―normal‖ perhaps more than anything else; even the pesky, day-todayness of slipping into a seat belt, starting the ignition and hurtling toward the grocery store. I haven’t bought groceries or run errands to Target or shopped for a gift or been to a bookstore or driven to the doctor for two years. Thoreau’s
experiment, by way of contrast, demonstrated a stubborn, almost perverse insistence upon self-reliance. From my
edge of reality, his self-indulgence belies an arrogance that few could survive.
The greatest surprise of my enclosure has been the freedom within a constricted life. I am the author. It is
mine to write. My task is as simple and complicated as merely choosing what has come to me unbidden and unchosen.
My new vocation that of loving extravagantly the shreds of life that are wondrously left to me:
Today, with early morning sun piercing through my crepe myrtles (three of which now extend beyond
the roof’s peak) I swept fuchsia myrtle blossoms off a bit of my sidewalk. My flock of sparrows micromanaged my efforts—in a tsunami of chattering.
The satisfaction is enormous, having searched (three months now) for a broom whose weight is slight enough
for my disabled muscles to hold. Actually? Friends have searched for this precious broom, since the effort of being
driven to a store in the beastly Oklahoma heat, then walking into the store, then searching for brooms—has proven too
physically challenging for my body. Overjoyed that finally, at last, with friends having made repetitive trips to multiple
stores—I have a use-able broom—I laugh when my feather-weight broom proves itself ―disabled,‖ lacking the ability to
effectively clean, as a normal broom would. We make quite a pair!
Continued on page 6
The Oklahoma Chapter of the Myasthenia Gravis Foundation of America, Inc.
Page 5
Yesterday I swept a three foot by three foot area of my walk before my arm muscles fatigued. Today, I began
with the second three-by-three square.
Feeling profound satisfaction with each inch of sidewalk appearing clean swept under my
broom, the thought ―There is nothing so fine as a clean swept sidewalk,‖ wanders across my mind, and
then a smile, as I remember being utterly mystified by my mother’s love of a clean sidewalk—and her
early morning request each summer’s day of my childhood, ―Kay Lynny, get outside and sweep that
sidewalk!‖ Nature or nurture, I smile to myself, glowing with contentment at my ever-so-clean (and
small) bit of walk.
As I labor, lawn crews descend upon my neighbors’ yards. Gradually, as mowers, trimmers,
and blowers are geared up, my previously peace-filled yard rumbles into a low roar, as if, like a jet plane, it might momentarily lift-off.
Disabled, I am delighted to sweep one-seventh of my sidewalk. I am astonished by the pleasure of it. Meanwhile, my ―able‖ neighbors pay to have lawns ―blown clean.‖ Where is the delight in that? They must work. I cannot. I
enjoy our yards while busy at work, they cannot.
It feels a parable in living essentially.
Dr. Kay Northcutt is an MG patient, diagnosed in 2009. She serves as a member of the
Oklahoma MG Chapter board. Dr. Northcutt is a ordained minister in the Christian Church
(Disciples of Christ), she is also much sought after preacher and retreat leader,
and author. She has recently retired from Phillips Theological Seminary.
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The Oklahoma Chapter of the Myasthenia Gravis Foundation of America, Inc.
Becoming an Empowered Patient
You are part of your medical team every time you take your medications. It is very important that you doublecheck that you are taking the right dose of the right drug, at the right time, in the correct way. To accomplish
this, you need to know as much as possible about your medications. Your pharmacist can be an important
member of your healthcare team – use him or her as a resource whenever possible. Below are additional tips
for medication safety.
When dropping off prescriptions or requesting refills:
Tell your pharmacist all the medications and over-the-counter drugs you take – especially
those vitamins and herbal remedies purchased at a health food or nutrition store or a grocery
store. Your pharmacist has references that identify potential drug interactions.
Confirm that the computer has your current prescription benefit information, allergies and/
or drug intolerances, and phone number.
Find out how many refills you can get. Make sure that your physician has provided enough
refills until your next visit. Prescriptions and refills are only valid for one year.
Call ahead for refills. You should expect to have your refill ready within 24 hours.
When picking up your medications at your pharmacy:
Confirm the drug is correct at the pharmacy counter. Compare the instructions given by your physician to the
drug name on the pharmacy label.
Open the bottle and look at the medications to confirm that the medications are
imprinted with the correct drug name and strength. If there is no imprint, ask the pharmacist technician or the pharmacist to show you the bottle from which the medication
was dispensed for comparison. Also learn what your medications look like if you take
them over a period of time.
Liquids usually have a unique scent. Learn to recognize your liquid medications
by smell.
Confirm the dosage is correct. Compare the instructions given by your physician to the instructions on the
pharmacy label.
Pediatric medications are at high risk for dosage errors. Most drugs’ dosages are based on weight. Confirm
your child’s medication dose with your child’s doctor.
Maintain a list of your medications and the times of day you take each medication. This drug list and schedule
of doses is critical in keeping your medications organized. Ask your pharmacist to review your medication list and
schedule.
Source: National Patient Safety Foundation: www.npsf.org
Current Studies
You can find the most up-to-date studies on Myasthenia Gravis by going to:
clinicaltrials.gov and searching Myasthenia Gravis.
The Oklahoma Chapter of the Myasthenia Gravis Foundation of America, Inc.
Page 7
M/SAB Contacts Editor of Neurology
In a recent issue of the journal Neurology, the American Academy of Neurology published an evidence-based guideline
update, entitled ―Evidence-based guideline update: Plasmapheresis in neurologic disorders: Report of the Therapeutics
and Technology Assessment Subcommittee of the American Academy of Neurology.‖ In that update, the authors stated
that there is insufficient evidence to be able judge the efficacy of plasma exchange for myasthenic crisis and for treatment prior to thymectomy.
The MGFA and its Medical/Scientific Advisory Board (M/SAB) became concerned that this update has the possibility of
adversely affecting the treatment of MG patients, and particularly the use of plasmapheresis as part of their treatment. Out of that concern, the M/SAB issued a letter to the Editor of Neurology, a copy of which is printed below.
If you are denied coverage of plasmapheresis (plasma exchange) in the treatment of your MG as a result of the Neurology Update, we invite you to contact the MGFA to let us know.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Letter to the Editor
We applaud the efforts of the American Academy of Neurology to provide rigorous reviews of the literature to critically
assess the evidence supporting diagnostic methods and therapies for neurological disorders. However, we are concerned that use of Type I evidence only and the practice parameters as provided in this paper may be misinterpreted
by patients, federal agencies, practitioners and insurance companies that the absence of evidence from randomized,
double-blind, controlled trials implies a lack of efficacy. The update of plasma exchange for neurological disorders concluded that evidence for the application of plasma exchange for myasthenic crisis and treatment prior to thymectomy
merits a Level U recommendation.1 For myasthenia gravis, and many orphan diseases, randomized placebo controlled
studies are difficult to design and perform for numerous reasons; these include ethical concerns based on standards of
care, lack of federal funding, absence of economic incentives for industry sponsorship, poor infrastructure for performance of trials, and the challenge of coordinating clinical trials for a rare condition.2 Furthermore, widely accepted standards of care may prompt medical ethics boards to deny approval of placebo control arms in clinical trials, and until
alternative therapies can be used as active comparators in superiority studies, advocating the Level U in this instance
could do harm. We do not disagree that there is a lack of placebo controlled trials of plasmapheresis in MG. However,
in the case of plasma exchange, there is a consensus worldwide that the treatment is rapidly effective for myasthenic
exacerbation. The preponderance of clinical experience and published observation rises to a level that argues against
the need for a randomized trial which includes a placebo (sham exchange group). Many would view such a trial design
to be unethical for patients in myasthenic crisis, since treatment failure could mean death. We are reminded of the
tongue in cheek article published in 2003 of the lack of randomized controlled trials of the parachute.3 We think this
Continued on next page
Page 8
The Oklahoma Chapter of the Myasthenia Gravis Foundation of America, Inc.
Continued from page 8
point should have been made in the choice of parameters used to judge treatments. While we recognize that further
investigation is needed to improve treatment of MG, a randomized, sham controlled trial of plasma exchange, while
ideal from an academic perspective to satisfy Type 1 evidence criteria, would be virtually impossible to conduct, would
not be in the best interests of patients, and would likely place other important therapy questions in the field of MG on
hold.
Henry J. Kaminski, MD
Gary Cutter, PhD
Robert Ruff, MD, PhD
Gil Wolfe, MD
The appendix contains names of individuals who indicated agreement with the contents of this
letter.
References
1. Cortese I, Chaudhry V, So YT, Cantor F, Cornblath DR, Rae-Grant A. Evidence-based
guideline update: Plasmapheresis in neurologic disorders: Report of the Therapeutics and
Technology Assessment Subcommittee of the American Academy of Neurology. Neurology
2011;76:294-300.
2. Aban IB,Wolfe GI, Cutter GR, et al. The MGTX experience: Challenges in planning and
executing an international, multicenter clinical trial. J Neuroimmunol 2008;201-202:80-84.
3. Smith, G.C. Pell, J.P. Parachute use to prevent death and major trauma related to
gravitational challenge: systematic review of randomized controlled trials. Br Med J
2003;327:20-27.
What does the M/SAB do?
- Henry J. Kaminski, Chair of the M/SAB
The Medical/Scientific Advisory Board (M/SAB) works as an advisory committee to the national board of the MGFA on
issues of research and patient care. It consists of physicians and scientists who are experts in MG. Throughout the last
year, members of the M/SAB have developed podcasts for patient education, established a research agenda and
worked to put into place the MGFA-American Academy of Neurology Foundation Clinician-Scientist Development
Award. This issue of the newsletter contains summaries by M/SAB members, Linda Kusner and James Howard, of
new and important research in MG. The M/SAB research committee also recommended funding a genome wide association study led by Daniel Drachman, another M/SAB member. The study hopes to discover genetic factors that may
contribute to causing MG. All these initiatives were approved by MGFA leadership in order to enhance services to patients and to the MG research community. In the next year, the M/SAB members will continue their work to enhance
service to MGFA and all MG patients.
The Oklahoma Chapter of the Myasthenia Gravis Foundation of America, Inc.
Page 9
How Does Health Care Reform Impact You?
From Neurology Now, September/October 2010, pages 8-11
To make understanding health care reform easier, the American Academy of Neurology has explained five major provisions of the law pertinent to people with neurologic conditions:
Insurance Rejection Due to Pre-existing Conditions - Effective September 2010, children with a preexisting condition can no longer be denied coverage on their parent’s health insurance plan. Adults won’t receive this coverage until 2014. In the meantime, adults who have been uninsured for six months and have a preexisting condition will be entered into a new program known as the “high-risk pool” [check with your state’s
insurance department to find out how you can qualify].
Dropped Insurance Coverage - Effective September 2010, it will be illegal for insurance companies to drop
people from their coverage when they become ill.
Lifetime and Restrictive Annual Limits - Effective September 2010, insurance companies will no longer be
able to place lifetime limits on coverage costs. In 2014 any use of annual limits will be illegal.
Increased Transparency Required of Insurance Companies - Patients will gain access to more information on their health care providers and centers as well as the cost and quality of the care they receive. The first
step in this process occurred on July 1, 2010, when patients were given access to a website designed to help
consumers decide which insurance plan is best for them. Visit the website at healthcare.gov.
Closing the “Donut Hole” - The Medicare Part D “donut hole” is on its way to being phased out. The formula for reimbursement will change under the new law, but in the interim patients who reach the coverage gap
in 2011 will receive a 50 percent discount on prescription drugs.
Chapter Email Services
We‟re all about conserving resources, saving some trees and being more technologically savvy.
You can help! Go Green by receiving the HOVAK as an email newsletter.
Just let the chapter office know and we can send it to you in a email.
Email the chapter office at [email protected] and
tell us email me the Chapter MG newsletter.
Did you know that the OKMGF sends out late breaking MG information,
our chapter newsletter, patient meeting reminders and the National office‟s newsletter via email.
To sign up for this service please send an email to the OKMGF‟s office stating sign me up for
„OKMGF Email Service‟, send to [email protected]
This publication is intended to provide the reader with general information to be used solely for educational purposes. As such, it does not address individual patient needs, and should not be
used as a basis for decision making concerning diagnosis, care, or treatment of any condition. Instead, such decisions should be based upon the advise of a physician or health care professional who is directly familiar with the patient. The information contained in this publication reflects the views of the authors, but not necessarily those of the Myasthenia Gravis Foundation
of America (MGFA) and the Oklahoma Chapter of the Myasthenia Gravis Foundation of America, Inc.. Any reference to a particula r product, source, or use does not constitute an endorsement. MGFA, its agents, employees, Directors, chapters, its Medical/Scientific Advisory Board, and its Nurses Advisory Board or their members make no warranty concerning the information contained in this publication. They specifically disclaim any warranty of merchantability, fitness for any particular purpose, or reliability regarding the information contained herein, and
assume no responsibility for any damage or liability resulting from the use of such information.
Page 10
The Oklahoma Chapter of the Myasthenia Gravis Foundation of America, Inc.
DONATIONS – HONORARIUMS – MEMORIALS
The following are the names of those
who have paid their Chapter memberships or
have made contributions to the Chapter from
January 21 — April 6, 2011.
In Memory of Hayes Denney
Mark & Gale Wood
In Memory of (Aunt) Roma Jean Shrum
Dawn O’Bar
Foundation Grants
William K. Warren Foundation /
Saint Francis Health System
Donations & Dues
H.R. Cooper
Mark Swift
Fred Escott
Virginia Ball
Beulah Watkins
Art Wilson
Wanda Morrison
Charlene Evans
Jerry McDonald
Janice Peoples
Mr. & Mrs. Robert Karlovich
Jacki Hill
Dawn O’Bar
Barbara Chastain
JoAnn Derrick
Michael V. Parks
Gary Bryan
Robert & Betty Briggs
Mary Cox
Remember a family member’s or a friend’s birthday, graduation, anniversary,
or memory with a donation to the OKMGF.
Our chapter will send an OKMGF Birthday, Honor or Memorial card to let them know that you care.
Thank you
so much for
remembering the
Oklahoma
Chapter with
your annual
dues, your
special occasion
gifts, honors and
memorials.
Your donations,
small or large
are greatly
appreciated, and
are tax
deductible.
Without your
support we
could not
continue our
work.
May no myasthenic ever feel
alone in their disease.
Thank you!
Chapter Contact Information
Hovak is published quarterly by the Oklahoma Chapter of the
Myasthenia Gravis Foundation of America, Inc., 6465 S Yale
Ave., Suite 623, Tulsa, OK 74136, Editor: Peggy Foust
OKMGF Board Members : Jeanmarie Carper,
DeAnna Cooper, Ed.D, Jennifer Morris, Kay Northcutt, D. Min.,
Leon Seaton, RN/Pastor & Carolyn Staubach, RN.
Tele #: 918-494-4951, fax: 918-494-4951
Executive Director/President - Peggy Foust
email: [email protected]
Vice President /Treasurer/Secretary - Margret Feller
webpage: http://www.myasthenia.org/chapters/Oklahoma/
Myasthenia Gravis Foundation of America, Inc.
The OKMGF Chapter office is open: Monday & Friday - 11:00
a.m. - 4:00 p.m., Wednesday 9:00 a.m.- 4:00 p.m.
1821 University Avenue West, Suite S256 St. Paul, MN 55104
-2897 1-800-541-5454 1-651-917-6256
Monday – Friday 8:00 a.m.–5:00 p.m.
email: [email protected]
webpage: http:www.myasthenia.org
Office Staff: Peggy Foust, Executive Director & Margret Feller
The Oklahoma Chapter of the Myasthenia Gravis Foundation of America, Inc.
Page 11
The Oklahoma Chapter
of the Myasthenia Gravis
Foundation of America, Inc.
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“The Disease Nobody Knows”
MYASTHENIA GRAVIS
It can strike anyone at any age. MG is a highly misdiagnosed autoimmune disease in which communication
between nerve and muscle is impaired, causing weakness. Its primary symptoms are erratic. The most common symptoms, alone or in any combination are : droopy eye lid(s), weak arms, hand neck, face or legs,
difficult chewing, smiling, swallowing, talking, or breathing or shallow respiration, blurred or double vision, sense of balance difficulty or undue fatigue. MG can masquerade as over work, under-rest, anemia,
vitamin deficiency, disease of the involved organ(s), or even emotional disturbances.
MG’s cause is unknown. There is no cure. As a result of research financed by the Myasthenia Gravis Foundation, diagnosis and treatment procedures have markedly improved. The MGFA, a charitable non-profit
organization, was formed to serve patient needs, promote public awareness and provide for research. The
Oklahoma Chapter of the Myasthenia Gravis Foundation of America, Inc. is the only organization in the
state of Oklahoma that works exclusively for Myasthenics.
Working for a Cure—Together we are Stronger