In this issue:

	A message from our Foundation chair
	A new Chief Executive and a new perspective
	Advocacy for myasthenia gravis “on the hill”
	MGFA supports research projects
	Living with MG: how do I help my children understand?
	Emergency protocol for myasthenia gravis: being prepared for a crisis
	New direction of MGFA: the research initiative
	College scholarships for individuals with parents with disabilities
	Study of thymectomy for treatment of myasthenia gravis
	Across the country, great things are happening!
	Did you know? - Ohio Chapter “Favorite Recipes” cookbook available - Ocular MG brochure available - Annual Meeting videos available - Summary of 2005 Scientific Session available - 2006 Annual Meeting registration deadline is near
	Calendar
	Associations
	Would you like to donate to MGFA?
	Subscription Information

As we progress into 2006, the Board of Directors has set its vision and focus: enhancing our long-term funding for research. It will take planning and teamwork to accomplish this. The Board of Directors and the Medical/Scientific Advisory Board are working together as we move forward in establishing an endowment fund, developing funding initiatives and identifying the scientific areas in which future research will be conducted.

We know that public awareness of myasthenia gravis is a key component in achieving our goals; namely, in raising funds for current research, a long-range endowment and general administration. We are working with Shazaaam! LLC, our pro bono PR firm, on how and where these efforts will best be utilized. Myasthenia Awareness Month is just around the corner and represents an excellent opportunity to increase awareness.

Our national office staff—Jan Golden, Mat Spaan and Liz Parker—work directly for MGFA under Nonprofit Solutions. In addition to organizing and conducting our day-to-day business, they are committed to supporting the Board in these endeavors.

Jan Golden serves as our Chief Executive. Jan’s 20-plus years of service in the nonprofit world provide the background and experience needed to manage and execute all aspects of MGFA operations—from reviewing financials to strategic planning; from organizing meetings and newsletter production to providing leadership and direction in implementing the goals and vision of the Foundation as identified by the national and advisory boards.

As chapter/patient services manager, Mat Spaan coordinates and administers all duties relating to chapters—from state licenses to literature production; from reviewing chapter financials, insurance, compliance to—most importantly—serving as the vital communications link between Chapters and the Foundation.

Liz Parker is the “voice” of MGFA. She is the source for answers to questions and concerns of the many patients and family members who call or e-mail the national office daily. She is also the key contact for donors and is responsible for the record-keeping for all contributions, donations and bequests. Working closely with Jan and Mat, as well as with the Medical/Scientific Advisory Board, Liz contributes greatly to the efficiency and effectiveness of the national office.

Additional support staff provide accounting, communications/graphic arts, meeting planning and technical expertise, resulting in an efficiently-run team.

Everyone gets nervous about unfamiliar things: moving, meeting new people, starting a new job. I was a little apprehensive about starting my new job at MGFA and a million questions darted through my mind as I navigated through all those forms and documents that everyone has to sign when starting with a new company. I was a little nervous, and wondered what the future would bring to me in my new role.

I understood what my responsibilities were but, being unfamiliar with the surroundings and people, everything seemed foreign and different—and, to be honest, a little daunting. Oh, I had been aware that there was a disease called myasthenia gravis through my work at the Minnesota Medical Association, but I didn’t know anything about it. I certainly didn’t know any of the symptoms or treatments or the incredible amount of ongoing research. In truth, while I came fully equipped professionally to serve as Chief Executive for MGFA, I also brought with me misconceptions, old wives’ tales and half-truths about MG.

I’m sure that’s how many people feel when they’re first diagnosed with MG—a little afraid about what the future is going to hold, wondering who to turn to for help, where to go to for information. And they remember things they might have heard in the past—such as a comment from a well-intentioned co-worker or family member—that perhaps were untrue, inaccurate or outdated, and might embrace these myths and misconceptions of MG as truth.

In this information age, we may assume that people know about MG and that they understand the disease. This is apparently not the case. Just the other morning, our help line received two calls that illustrated very clearly that, while they knew about MG, the callers’ misconceptions of the disease spoke volumes about their fear and ignorance of it. We also recently heard the account of a myasthenic who was left in an ER treatment room for several hours until the nursing shift change because the staff didn’t know how to treat him.

I spoke with a father not long ago who was heartbroken that his teenage daughter would no longer participate in sports after being diagnosed with MG. I assured him that there are professional athletes with MG and that his daughter, with proper treatment and care, could potentially be able to continue in her activities. We have also been asked if MG is contagious and if MG can be transmitted by sneezing or by drinking out of the same cup.

These kinds of questions may seem silly to those of us familiar with MG, but we must understand that, like someone on the first day of a new job, these questions come from anxiety and unfamiliarity with the disease. People need to know where to go for answers and what the right questions should be.

By increasing public awareness and understanding of the disease, we will dispel untruths, myths and, in some cases, outrageous fallacy. Through its awareness initiatives, MGFA aims to “spread the word” about MG. Our goal is that newly-diagnosed myasthenics, as well as patients who have lived with the disease for years, will be able to find information, education and support through local chapters, physicians and caregivers, as well as support from educated family members and the public in general.

MGFA is made up of many strong individuals—from the support groups to chapters to the national board. I feel privileged to be part of this organization and I believe that, together, we will slay the demons and dragons of misunderstanding and ignorance and raise the banner of understanding and knowledge.

The past few months have seen an enormous amount of activity in Washington’s political arena on health issues that directly impact myasthenia gravis, research funding, public awareness, and professional training. The re-authorization of the National Institutes of Health (NIH), Medicare & Medicaid and Part D of the prescription drug act has taken center stage in the public’s eye. Conference meetings, resolutions, riders on bills, pro and con leadership, advocacy groups and ad hoc groups meeting with congressional leaders fill the horizon with hopeful responses.

Myasthenia patients participated with the National Coalition of Autoimmune Patients Group (NCAPG) on the 29th and 30th of March 2006, meeting with Congressional leaders at a breakfast meeting and continuing to reinforce the goals and objectives of the autoimmune and MG communities.

The program consisted of:

• A research forum on the latest findings in autoimmune disease research.
• A reception and dinner with invited guest Rep. Patrick Kennedy and actress Kellie Martin.
• A public policy forum on getting your message to your congressman.
• A Congressional briefing lunch and reception.
• Opportunities to visit Congressional representatives and their staff.

Participants had the opportunity to express their concerns for additional funding needed for medical research, as well as for the budget cuts to Medicare/Medicaid. By working with NCAPG in this conference, we had a real chance to deliver our message: the need for research toward better therapies and, one day, a cure.

You still have a good chance this year to see your Representative in his or her home office, as he or she should be spending more time at home trying to get re-elected—meaning he or she wants to hear from you. So become informed about the issues, plan your visit, stay focused on your visit objective, and be prepared to respond to questions like, “And what would you do to correct the situation”? “What do you recommend?”

For more information about the conference or the issues involved, please contact:

The Research and Grants Committee of MGFA’s Medical/Scientific Advisory Board awarded the $50,000 Post-Doctoral (formerly Osserman/McClure/Sosin) Fellowship for 2005 to Jing Li, MD.

Dr. Li is a neuroimmunologist at the University of Texas Medical Branch - Galveston. Her research project, under the direction of Premkumar Christadoss, M.D., is “Ocular myasthenia gravis in HLA transgenic mice: role of DAF.” This study will reveal the cellular mechanism by which ocular EAMG advances into generalized EAMG in mice, and the possible role of DAF in regulating complement deposits in the extraocular muscles and its involvement in ocular MG pathogenesis. The study may lead to therapeutic testing of specific agents that could suppress the classical complement pathway.

The $3,000 Student (formerly Henry R. Viets) Fellowship has been awarded to three medical or premedical students:

• Lindsay Knudsen, University of Wisconsin Milwaukee, under the direction of Deborah E. Rendard, PhD: “Evaluating the effects of psychological counseling of people with myasthenia gravis”

• Gina Eom, University of British Columbia - Vancouver, under the direction of Joel Oger, D en M, FRCPC: “Review the clinical characteristics as well as the results of patients who had ‘a false positive’ acetylcholine receptor antibody level”

• Iris Wingrove, University of Texas Medical Branch - Galveston, under the direction of Premkumar Christadoss, M.D.: “Research on ocular experimental MG progress to generalized MG by epitope spread”

Explanation of medical terms used in this article:

Conversations with your children about how myasthenia affects you are very important. Parents sometimes feel that they want to protect their children from upsetting information about family illness. Parents do this out of love and concern for their children, but it is far better to be open and honest about your illness.

Like adults, children can sense when something’s wrong. They notice the way myasthenia physically affects you and they can pick up on the emotional distress that you feel about your illness. Without concrete information, children may begin to imagine that your illness is far worse than it actually is. Also, young children may believe that they have done something to cause you to become ill. Talking to your kids about myasthenia and their feelings will help to clear up misconceptions and provide much-needed reassurance.

Before you can explain myasthenia to your children, you must first educate yourself! Start your education by making the most of your medical visits.

• Ask your health care providers for information about myasthenia. Ask questions about things that you don’t understand.
• Get information from MGFA and your local chapter. Go online to www.myasthenia.org to print out an array of useful patient brochures. (All of the medical information on the MGFA Web site has been reviewed and approved by our Medical/Scientific and Nurses Advisory Boards.)
• Remember: each person with myasthenia is affected uniquely. Another’s experience with the disease and its various therapies will be different than yours. If you have questions, always seek the advice of your physicians or other qualified health professionals before making any adjustments to your medical therapy.

Plan how you will break the news of your illness to your children.

• First, consider your child’s developmental stage and level of understanding. What you will say to a five-year-old will be far different than what you will need to say to a teenager!
• Talk to your health care provider, counselor or clergy about the best way to approach the topic with your individual children.
• Discuss the issue in a local MG chapter support group and learn from the experiences of others.
• Talk to your children’s teachers to provide information about your illness and ask for their support. Communicating with your children’s teachers will also help you identify early any behavior changes in your children that may be a reaction to your illness.

When you talk to your children, be prepared to offer lots of reassurance.

• Anticipate the questions that your children may ask and be prepared to answer them honestly with information that they can understand based on their age and maturity. Anticipated questions may include:
  – What is myasthenia gravis (MG)?
  – Can I catch it?
  – How will your illness affect me and my activities?
  – What made you sick?
  – Will you die from myasthenia gravis?
  – Will you have to go to the hospital? If so, who will take care of me?
  – What will happen to you?
• Remember that children may have difficulty expressing their worries. You should be prepared to possibly lead the conversation by asking them if they are worried about some of the above issues.
• Be composed and upbeat when you talk with your children.
• Always be honestly reassuring!
• If you don’t know the answer to one of their questions, say so. It’s okay to share your own frustrations with having myasthenia gravis. This is a normal reaction, which children should understand.
• For your own personal support, ask your spouse, another adult family member, or other trusted person to join you in the conversation with your children.

Choosing the time to tell your children about your diagnosis of myasthenia gravis is best determined by you, because you know them best. However, it is generally better to talk to them soon after diagnosis because your kids are noticing your physical symptoms, too. If you don’t talk to them about myasthenia, they’ll resort to their fears and imagination to explain what they’re observing about your symptoms. They may believe that your symptoms are punishment for something they did. If your child blames him- or herself for making you ill, encourage him or her to express his fears and provide reassurance. Tell him or her directly that he or she is not responsible for your illness.

Explain to your children that the symptoms of myasthenia are variable, fluctuating, and somewhat unpredictable. (This is hard even for adults to understand.) For example, your children may wonder why your right eyelid is droopy one day and your left eyelid is droopy another day. They may wonder why they can understand your speech at the beginning of reading their favorite story but not at the end. They may wonder why you look sad and can’t smile anymore. There are no easy answers to explain this without going through difficult-to-understand pathophysiology. For children, you should just explain that “this is the way myasthenia is.” You can reassure them that adjustments to your treatments may help to control the symptoms.

Finally, reassure your children that you will do everything possible to get and stay healthy.

• Explain to them that you have skilled doctors and nurses who are helping you.
• Reassure your children that the current treatments for myasthenia make most people significantly better.
• Share your frustrations, but also be upbeat!
• Tell your kids that, in some cases, the symptoms can go away for a time.

Since the variability of myasthenia symptoms can affect the family, it’s important to continue talking to your children about MG. A good forum for doing this is through your participation in MGFA chapter activities, which will better educate you and your family about your illness. It will also teach your kids that there’s a lot of value in providing service to others.

This article is reprinted from MGNet, 2004, but we felt it was a timely addition to this issue of Foundation Focus.

A protocol for emergency care for every myasthenic is a great idea, but remember: as we are all unique and react differently, so will our crisis parameters be different. The best I can offer is a “shell” and you will need to think about your own specific details and how they relate to these tips.

Now we’ll move on to what happens at home so you “know” when you need help.

In general, it’s a good idea to get in the habit of keeping a medication “diary.” This is really just a list of what medications you’ve taken each day, in what strength, and at what times. This is invaluable to any caretaker should you not be able to speak for yourself.

If you feel you must go to the ER, have someone call ahead to the ER, ask for the triage nurse or “doctor in charge” (it won’t be your neurologist), and state that a person with MG will be arriving shortly and cannot (fill in the blank here: swallow, breathe, move, whatever). Take the piece of paper with you on which you outlined your problem and what you’ve tried to do about it. Believe me when I tell you that you won’t be in any shape to answer the ER staff’s nine million questions, and they must know your history in order to treat you appropriately.

Take with you all of your MG medications and whatever you need to swallow them (e.g., icing, yoghurt, pudding) because you won’t want to wait for the hospital pharmacy to order it—that can take several hours! (However, do not take any medications until you are seen by the ER doctor in case it’s the medication level itself that turns out to be the problem.)

If the ER triage nurse (the one who briefly sees you and determines the level of seriousness of your problem) does not understand MG or MG problems, you will have to make sure the person who accompanies you to the ER makes sure the nurse reads your piece of paper! Likewise, your accompanying advocate will need to watch the clock­—and you—to make sure you’re not getting worse while you wait to be seen by the ER staff.

History

Since its establishment in the 1950s, MGFA has served to promote, facilitate and fuel the research mission in the battle with myasthenia gravis. The members of the Medical/Scientific Advisory Board (MSAB) over the past 50 years is a “who’s who” of investigators involved with every important advancement in our understanding of MG and advancing the state of the art in clinical management. Additionally, MGFA has funded medical students and also post-doctoral fellows (Viets and Osserman Awards, respectively) for many years. Such awards have directly or indirectly contributed to our major advances and helped attract and support career development for many young investigators who would go on to lengthy, productive careers critical to advancing our knowledge about MG and related disorders (such as Lambert Eaton Syndrome).

1950s	1960–1970s	1970–1980s	1980–1990s	2000s
Mestinon®	Intensive care and ventilator management	Corticosteroids	Treatment with cyclosporine, azathioprine, plasma exchange and IVIg	Studies including mycophenylate

Many pieces of the myasthenia gravis puzzle have been located and clarified during our lifetimes. We know what the disease looks like from the standpoint of clinical signs and symptoms and now are able to train physicians sufficiently well to allow for early recognition in the majority of patients.

We know that the disease is caused by an autoimmune attack directed against the neuromuscular junction. The acetylcholine receptor antibodies that produce the disease have been found and thoroughly characterized in terms of structure and function. We know that there are different types of antibodies (acetylcholine receptor binding, blocking, and modulating antibodies) and we know where they bind and how they produce dysfunction of neuromuscular transmission. Assiduous work over recent years has led to the detection of yet another antibody (MuSK) responsible for MG in a smaller group of patients.

The link between the thymus gland, the immune system, myasthenia gravis and other autoimmune disorders has been clarified. We now know how to confirm the diagnosis with nearly complete certainty. In neurophysiology, we have developed highly-sensitive neurophysiological tests in the EMG lab. Both forms of testing combine with the older methods of edrophonium testing to allow clinicians to make this diagnosis early and with high levels of certainty. For the large majority of patients, we can make a diagnosis early and effectively.

Over the last 40 years, we have made steady progress in developing more effective treatment options that, in the majority of patients, are highly effective and provide for a relatively normal life-style.

There has been remarkable advancement in the understanding of what is referred to as congenital MG (a genetically-based set of disorders that produce symptoms similar to MG, typically with symptoms from birth or early childhood). In the last five years, we have seen the creation and establishment of standards for clinical research in MG—a set of tools and methods that should markedly improve the quality and consistency in clinical research now and in the future.

What is there left for us to worry about?

While the research to date has produced stunning results, we must not become complacent. We are still missing key pieces in the puzzle of this disease.

We have before us the opportunity to use the talent and research technology to study and clarify a broad spectrum of questions that need to be answered. For example, why does a person actually get myasthenia gravis? What initially triggers the autoimmune response? Is it genetically determined? Is it due to exposure to some type of infection or perhaps to a toxic exposure? Is it a result of an initial malfunction in the thymus gland? Is it, in fact, a combination of factors that must occur in concert to trigger the disease?

When such questions are answered, then we can more realistically look at ways in which to prevent the development of MG or minimize the severity of symptoms.

The MSAB is enthusiastic in collaborating with the MGFA board on its research initiative and will act to reinforce research as a priority within the organization.

The vision is establishment of an MGFA endowment of sufficient magnitude to fund meaningful research with the goal of addressing the important issues. As major fundraising is best linked to specific goals and programs, the MSAB will provide the research goals, targets and timelines as a five-year and a ten-year strategic research plan. The MSAB will create, track and modify a research outline to be used as a beacon and a guidepost for research fundraising by MGFA.

Through the Looking Glass, a nonprofit organization founded in 1982 dedicated to increasing knowledge regarding parenting with a disability and supporting more accessible and disability-appropriate resources for diverse parents with disabilities and their children, has announced their 2006 College Scholarship Fund specifically for graduating seniors who have parents with disabilities.

Scholarships funds are available to graduating high school students who:

Up to ten separate $1,000 awards will be given out in summer 2006. These awards are one of several projects of Through the Looking Glass’ National Resource Center for Parents with Disabilities. This National Center is funded by the National Institute on Disability Research and Rehabilitation (NIDRR), U.S. Department of Education.

More information and application forms are available on Through the Looking Glass’ Web site: www.lookingglass.org. Forms may also be requested by calling Through the Looking Glass at 1-800-644-2666. Application materials must be submitted to the Through the Looking Glass office and postmarked by May 1, 2006.

Physician-scientists from throughout the world are joining together to study thymectomy for the treatment of myasthenia gravis. Your first reaction may be “why?” Thymectomy has been used in the treatment of MG for nearly 50 years. Many of you reading this article have the scar or scars on your chest to prove it, and the vast majority of MG experts—including those doctors involved in this trial—think that thymectomy increases the chance of remission. However, treatment has changed since thymectomy first became an accepted therapy for MG, and many of the studies of thymectomy do not clearly determine whether surgery or other medical treatments, like prednisone, helped the patient most.

Physicians and patients are now more demanding in the proof that they require in making a decision about health care. In 2000, a report from the American Academy of Neurology authored by Drs. Gary Gronseth and Richard Barohn reviewed studies of thymectomy for myasthenia gravis and found “All currently published studies have serious methodological flaws that prevent definitive conclusions regarding the benefit of thymectomy.” Gronseth and Barohn recommended a prospective, randomized trial be done. MGFA also was concerned about research studies of treatments of MG and established a committee under the leadership of Dr. Alfred Jaretzki to set guidelines for future studies. In the authors’ experience, patients also demand to know detailed information about the chance of remission after receiving thymectomy or whether medications alone are just as good. We do our best in answering these questions but cannot supply precise answers because of the problems described.

Appreciating the need for a study, Drs. John Newsom-Davis from Oxford University in England, Gil Wolfe from the University of Texas Southwestern Medical School, Henry J. Kaminski from Case Western Reserve University, Alfred Jaretzki from Columbia University, and Gary Cutter from the University of Alabama at Birmingham have organized more than 70 investigators from six continents into a collaborative trial of thymectomy for treatment of generalized MG. The study has been funded by the National Institutes of Neurological Disorders and Stroke. Since 2000, these investigators have worked together to refine the study design to allow it to be acceptable to the NINDS’s strict demands for patient safety and scientific rigor. The study is set to begin enrolling patients on April 1, 2006 at participating centers.

How is the investigation being done? The basic design calls for patients with generalized MG to be randomized to receive prednisone under strict set guidelines or thymectomy and prednisone with the same prednisone treatment plan. The most important—and often the most difficult aspect for some patients to understand—is “randomizing.” This means you have an equal chance of either undergoing the surgery or not having surgery; similar to a flip of a coin. A patient needs to understand that, to participate in this study, he or she must accept that he or she may or may not have a thymectomy.

Why does this need to be done? As we all know, each MG patient is unique, and the investigators need to make sure that the differences among patients are equally represented (to the best possible extent) in those who receive a thymectomy and those who do not. The best way to do this is randomization. If patients (or doctors) were to choose whether to undergo the thymectomy, it is possible that a bias would develop—for example, that all the patients that chose to have a thymectomy might have certain other characteristics (higher acetylcholine receptor antibody levels, younger in age, or some other trait that cannot be identified) that make it less likely that they would benefit from the surgery. If that occurs, the results of the study would again be confusing or wrong.

During the three years of the study, the patients are monitored by specific examinations of their muscle strength, prednisone dose, and development of adverse effects (any medical problems they have during the study). To avoid physician bias, the patient is asked to never tell the study examiner to reveal if he or she has had a thymectomy or not (the neurologist at each study center will know so you always receive the safest medical treatment during the study). The study is long, so patients need to be willing to be monitored for three years. If the treating neurologist or the patient feels that the patient is doing poorly in the study, other drugs can be added or the patient can stop participation in the study at any time.

Everyone receives the accepted treatment of prednisone. For the study to be effective, a single operative procedure must be employed. The thymectomy procedure to be used is the extended transsternal approach. This has been selected because it is recommended as the procedure of choice at most major medical centers and predictably removes most or all of the thymus. Whether other thymectomy techniques produce similar results will have to be determined by similar rigorous studies in the future. The study does not allow any other type of thymectomy. The study cannot take a chance of more confusion in understanding MG treatment by allowing a surgeon or patient to choose the surgical method to be used.

Patients will be between 18 and 60 years of age, have generalized MG (patients with pure ocular myasthenia are not to be studied), and be seropositive (have antibodies against the acetylcholine receptor in the blood). Patients with a thymoma are not to be studied because all experts agree that these patients should have the thymoma removed. The goal of the study is to determine whether, after three years of treatment, patients receiving a thymectomy have received lower doses of prednisone, have fewer side effects, and are just as strong or stronger than patients not having the thymectomy.

Some of you reading this article will wonder why cyclosporine or mycophenolate are not being studied, or why older patients or those with ocular MG are excluded. It is important to understand that not all answers can be reached with one study. If too many questions are asked, none will be answered. The reason that so many centers are needed is that large numbers of patients have to be studied to have clear understanding of the result because, again, the many differences among patients must be “equaled out.”

We expect that it will take five years for this study to be completed. When it is completed, we believe that the MG community will have a long-awaited definitive answer as to whether the generalized MG patient does better with a thymectomy than standard medical therapy alone.

Our chapters continue to be one of the main points of support for MG patients and families across the country (and internationally!). Through their tireless efforts, MGFA has been able to continue to educate, advocate and provide emotional and physical assistance to an ever-widening audience. Although our chapters vary widely in their size and scope, they each remain similar in a very key area: dedication to the shared vision of MGFA to strive for “a world without MG!”

You will find below a sample of activities taken on by our chapters in fulfilling our mission, as well as a sample of chapters that are actively seeking volunteer help in a variety ways. However, it’s important to remember that all of our chapters play an important role in providing outreach, support and education throughout the US, and that they welcome all new or returning volunteers able and willing to support our important mission.

Our Connecticut “Nutmeg” Chapter has engaged in several special events throughout last year. For example, their monthly support group for the Chapter, based at St. Vincent’s Hospital in Bridgeport, celebrated its fifth anniversary in 2005. The support group is active in planning speakers, discussions and other various activities, and has been spotlighted by their local media for their community outreach efforts via doctors’ office and hospitals treating MG patients.

The chapter also hosted its third major fundraising benefit in four years at the Courtyard by Marriott Hotel in Waterbury, CT during “June is Myasthenia Gravis Awareness Month.” Held on June 24, 2005, the evening was titled “Laughter is the Best Medicine” and included a cocktail hour, dinner, raffle, silent auction and entertainment by a professional New York City comedian. State Representative Selim Noujaim of Waterbury and Greg O’Brien of the ESPN television network were the emcees and helped the Chapter raise nearly $15,000 for patient education, support and services to families. Over 250 people attended the sold-out evening, including many local and state dignitaries. Newspapers and radio talk shows from around Connecticut offered coverage of the event—which helped to promote MG as well as the fundraiser.

Our South Florida Gold Coast Chapter is currently seeking attendees and volunteers for their various support groups. If you are in the southern Florida region and interested in either attending or volunteering for a support group, please contact the national office at (800) 541-5454.

Ohio Chapter cookbook available

Our Ohio Chapter has recently completed its “Favorite Recipes” cookbook. The cookbook—with 192 recipes from MG patients, families and friends—is now available for $10. To place your order, please contact the Ohio Chapter’s office by phone, e-mail or mail.

Ohio Chapter
2907 Lincoln Way E, Unit B
Massillon, OH 44646
Ph: (330) 834-9066
Fx: (330) 834-9067
E-mail: ohio@myasthenia.org
Web: www.myasthenia.org/chapters/Ohio

Ocular MG brochure available

MGFA has produced an informative brochure about ocular MG. You may read or download the brochure from the MGFA Web site (www.myasthenia.org) or contact the national office to request a copy.

Annual Meeting videos available

Several presentations from the 2005 MGFA Annual Meeting are now available on VHS tape. The tapes are available from the national office for $15 per tape, plus shipping and handling. Each presentation is approximately one hour in length. Topics covered on each tape are listed below.

• Annual Meeting 2005 video 1
  MSAB Update – by James F. “Chip” Howard, Jr., MD
  How Research Fellowships Are Selected – by Dr. Robert P. Lisak, MD
  MSAB Panel Discussion – moderated by Dallas Forshew, RN, BSN

• Annual Meeting 2005 video 2
  MG 101 – by Louise E. O’Donnell, NP
  Aging Well with Chronic Disorder – by Marianne E. Miller, BSN , MSN
  Taking Control of MG – by Dallas Forshew, RN, BSN

To receive a copy of either of these tapes, please contact the national office at (800) 541-5454.

Summary of 2005 Scientific Session available

A summary of the 2005 Scientific Session of MGFA is available on the MGFA Web site, www.myasthenia.org.

MGFA thanks the companies whose generous sponsorship helped make this event possible:

Aspreva Pharmaceuticals Gold Sponsor

Athena Diagnostics Session Sponsor

2006 Annual Meeting registration deadline is near

Please join us at the 2006 Annual Meeting in Tempe, Arizona. This meeting promises to be one of the best we’ve ever had!

Comments and suggestions from last year’s meeting have been carefully considered in each phase of the planning. Are we “patient friendly” enough? Do we have enough time between sessions? Is the handbook useful—and not too bulky to carry around? Will there be enough time to share all the information we have?

These are the practical aspects of a meeting such as ours. But we also look at the reason why we meet each year. MGFA strives to further research of the disease and provide useful and valuable information to its members. At the Annual Meeting, each presentation is carefully chosen to address specific areas of need and knowledge, from the perspective of pure medical and scientific research to the practical effects on patients and families.

The Buttes, A Marriott Resort (formerly Wyndham Buttes Resort) is spectacular, with crystal clear pools with waterslides, and hot tubs carved out of the mountainside. Delight in the magnificent backdrop of sun-warmed stone and blazing blue skies while you indulge yourself with excellent food and enjoy time with friends and family.

Above all, come and hear our message of hope in the desert—the message that we all play a part in reaching our vision: a world without MG.

We look forward to seeing you in May!

MGFA Board of Directors

Associations

MGFA is proud to be a member of the following associations: