In this issue:

Chairperson Update
Chief Executive Report
Across the Country
Words of Praise
  - Two women honored at 2005 Annual Meeting
  - 2005 Annual Awards
Timely Topics
  - Call for Abstracts
  - Mestinon® Coupon
  - Coming Attraction!
Would You Like to Donate?
Medical News
Thank You
Upcoming Events
MGFA Officers & Directors
Subscription Information

by Esther M. Land

The Myasthenia Gravis Foundation of America, Inc. (MGFA) is a national voluntary health organization. As this indicates, we are primarily comprised of volunteers who do an exhausting amount of patient support, public awareness and fundraising to promote the goals of MGFA. While staff looks after our day-to-day operations and serves as support, it is the thousands of people who volunteer across America and, literally, around the world who are the backbone of our organization.

Our volunteers come with dedication and expertise from a wide variety of backgrounds. At the national level, our Board of Directors is made up of business executives, medical professionals and patient lay members who donate their time and talent to bring a balance of ideas, set direction and serve in various capacities to ensure execution of the established goals. Our two medical advisory boards (Medical/Scientific and Nurses) are also represented on our Board of Directors. They are comprised of world-renowned experts with keen interest in myasthenia gravis who volunteer their time to review research grants, organize our annual Scientific Session and, every five years, the International Symposium on MG and related disorders. They also give guidance on medical issues as well as coordinate and present seminars on MG.

At the Chapter level, we are equally blessed with volunteers from the business, medical and lay arenas who donate vast amounts of hours in their areas of expertise, many working at the local office or at home on administration and fundraising activities. See LJ Taugher’s article for further information on volunteering.

This issue of Foundation Focus is, in large part, a tribute to our volunteers. It was our privilege to honor a select few of these volunteers at our April Annual Meeting. Their efforts are highlighted on the following pages. THANK YOU, VOLUNTEERS!

Meet Two New Foundation Directors

At the April 2005 MGFA Annual Meeting, the following gentlemen were elected to the national Board of Directors:

Samuel A. Schulhof – Boontown Township, New Jersey Chairman, Board of Managers, AMT Machine Systems Co-Founder and Chairman of Board of Directors, Phoenix Fuel Systems Previous positions: General Electric, Corp Research and Development; University of Pittsburgh Trust, Executive VP and COO; US Environmental Protection Agency, Administration; Peace Corps and VISTA, Director of Recruitment and Communications; Deputy Special Assistant to the President of the United States and Assistant to the Secretary of the Department of Health, Education and Welfare Experience in private and public sectors and in many areas of 501(c)(3) status, including conceiving, structuring, building and leading nonprofit firms Interests on MGFA Board: Strategic Planning, Public Relations, Chapter Relations		Samuel A. Schulhof
Damon J. Wainscoat – Dale City, Virginia Retired Chief of Requirements, Analysis, and Enterprise Architecture for IT systems in MIS Viet Nam veteran, myasthenia gravis patient, member and officer of Virginia Chapter of MGFA Previous Experience: Financial Management Analysis, Trainer for Financial Management, Personnel Management, Marketing, Internal Controls and Audits, as well as designed, developed, tested and fielded Life Cycle Management of IT systems for MIS Division worldwide for the US Army Affiliated with CFC and AARDA Interests on MGFA Board: Financial Management, IT development and advocacy		Damon J. Wainscoat

A sincere thank you to Dallas Forshew, RN, BSN, who completed three three-year terms on our Board, and to Ronald McFarlane, R Ph of Raleigh, NC for accepting the position of Vice Chairperson.

by LJ Taugher

In the past two years, the Foundation has taken great steps toward making itself a strong, healthy organization. I am pleased to report that we are in a stronger position than we have been in years.

With the organization back on stable ground, this is a very exciting time for the myasthenia gravis community. Stability gives us the opportunity to shift our focus from keeping the basics being provided to doing what we can as an organization to move ahead with more impact to the MG community. How do we provide more information to the public? How do we support more research? What can we provide chapters so they can serve their areas better?

This is the time for the Foundation, and for you as the MG community, to step up and use our collective voices to “strive for a world without MG.”

How can you do your part? Helping the cause can take many forms—perhaps in ways you haven’t thought about. Helping the MG community can be viewed in three areas: Volunteering, Voice and Financial.

Volunteering – The great part about volunteering is that being a volunteer can take as much or as little time as you wish to give. A person can volunteer to do a one-time project for his or her local chapter (such as helping stuff envelopes for a mailing) or for an ongoing commitment (such as helping plan a fundraiser) or for many other options with varying levels of time commitment. Contact your chapter or the national office to see if you could lend a hand. If you or a family member has professional experience in fundraising, public relations, accounting, management, business or another specialty, the national organization and local chapters could use your experience.

Voice – A person can speak as a patient to their local governments, national government or insurance companies. It is amazing how much these bodies pay attention to the letters and calls they receive on topics. Write a letter to your representatives, letting them know what is important to you as a person affected by MG. You can also work with your local chapter to have local governments declare June “MG Education and Awareness Month.”

Financial – The national Foundation and local chapters can always put dollars to good use. Funds are always needed for more research, patient services and information for doctors/nurses on how to treat MG, as well as the basic necessities, such as keeping the lights on at the Foundation. Donations—small and large—can make a difference in people’s lives and keep the research funded to find better treatment and, eventually, a cure. Included in this newsletter is a donation envelope for your convenience. Please consider making a donation or including the Foundation in your will.

As we move forward in improving the services, advocacy and research for MG, remember that you can do your part to help. Each hand, voice and dollar adds strength to our cause and will help us work to eventually find a cure.

Great
things are happening!

by Mat Spaan, Chapter/Patient Services Manager

As the new Chapter/Patient Services Manager for the Myasthenia Gravis Foundation of America, I have seen over the past several months the incredible role our chapters play in providing patient support and public awareness. Just as importantly, MGFA is strengthened by each volunteer that gives his or her time and energy to a support group, chapter or the national organization.

Included below are only a small portion of the many activities that our chapters and volunteers have recently accomplished through their energy and dedication.

Our Wisconsin Chapter held a Myasthenia Gravis Breakfast Benefit on April 13th. This event was in honor of Judy Schwerm, former executive director of the Make-A-Wish Foundation and myasthenic. The event raised more than $25,000. Not only does a successful event such as this provide the support needed to continue fulfillment of our mission, but it also greatly enhances MG awareness within the greater community.

Our Jim L. Walker Arizona Chapter held a highly prosperous Charity Golf Tournament on April 2nd at the Legacy Golf Course in Phoenix, AZ. The tournament was a resounding success, hosting the maximum participants possible with 144 golfers.

In April, Kelly Haughey, Executive Director of our Garden State Chapter, was interviewed by Dr. Jay Adlersberg, the Medical Health correspondent for ABC News (New York) regarding myasthenia gravis and the chapter’s May Walk-a-Thon. This interview was broadcast throughout the New York and New Jersey region. This is a great success for MG awareness.

Our Great Lakes Chapter successfully hosted the MGFA Annual Meeting in April. Many chapter volunteers tirelessly provided the energy and skills needed to pull off a meeting of this magnitude. Well over a hundred participants were present for this very successful three-day event.

Expanding the audience of our Annual Meeting, our online chapter, MGnet, provided a video stream on their Web site of all the meeting’s presentations. With an average audience of 25 per session, this tool allowed us to reach across the globe, bringing our Annual Meeting proceedings to those unable to attend.

Denise Sampson helps with the MGnet broadcast during the Annual Meeting.

There are plenty of opportunities for more volunteers and involvement with MGFA and its 33 chapters. Listed below are just a few of the many chances.

Our Northwest Texas Chapter will be conducting myasthenia gravis screening on Sept. 17, 2005 in El Paso, TX. For more information, or to offer help for this or any other of their events, please call (325) 554-7038.

Our Ohio Chapter is actively collecting recipes for an MG cookbook. If you have a great recipe, now is the time to share. You can send your recipe to 2907 Lincoln Way E, Masillon, OH 44646 or through e-mail at ohio-chaptermgf@nci2000.net. For more information, please call (330) 834-9066.

Our Metro New York Chapter will hold their Annual Fundraising Walk through Wantagh Park on June 12. The chapter is actively seeking help through volunteers, participants or financial donations for this event. For more information, please call (516) 538-0738. If you have missed this year’s event, now is a good time to contact the chapter in anticipation of next year.

Remember, there are plenty more opportunities than the ones listed above. To find out what your area’s chapter is up to, and what help they could use, please visit our Web site at www.myasthenia.org/chapters for current chapter contact information, or call the national office at (800) 541-5454.

Two women honored at 2005 Annual Meeting

Patricia now feels blessed to have had doors opened to her because of her “awful disease.”

As a teenager, Patricia was involved with the activities of the Foundation. However, when she was doing well as a young adult, she didn’t want to think about her “awful disease” and left the running of the Foundation to her mother. Patricia’s and Esther’s paths intersected when Patricia married Larry Wilson in 1980 and moved to Michigan. Patricia asked which doctors would know about MG in Michigan and she was referred to Esther Penninga, who “knows everything about myasthenia gravis.” When Patricia called Esther for medical referrals, Esther persuaded Patricia to be on a panel that very evening.

Pat Wilson with husband, Larry

For many years, “The Team” of Esther Penninga and Patricia Ellsworth Wilson gave lectures at nursing schools in Grand Rapids and Kalamazoo, Michigan. Together, they set up support groups in Holland, Michigan. After founding the Great Lakes Chapter in 1976, Esther has been on its Board of Trustees in varying capacities over the years and is the current Treasurer. She has mentored three Executive Directors. She volunteers at every chapter fundraising event and helps coordinate and conduct support meetings. She has never been too busy to lend a shoulder to newly-diagnosed patients or those needing to talk or those who are having health problems.

Esther doggedly works to make each MGFA Annual Meeting successful to the point that her own MG is clearly visible. Esther has made MG her mission and has done so while remaining committed to her full-time job of 45 years, from which she retired at the end of February. Although she is planning to take some personal time, she vows to remain dedicated to the MG cause.

At this year’s Annual Meeting, Esther was presented the Founder’s Award. This award is given in recognition of outstanding or unusual achievement in the conquest of myasthenia gravis by an individual who displays the same characteristics of initiative, courage and fortitude as our founder, Jane Dewey Ellsworth. It was proudly presented to Esther Land “in recognition of her extensive involvement and dedication to the Myasthenia Gravis Foundation of America, Inc. In fulfilling its mission for over 45 years, she has exhibited an unbounded willingness to provide support to our chapters and MG patients.”

Esther Land

2005 Annual Awards

The MGFA Awards Committee accepts nominations for Volunteer Awards each February. Encourage your chapter to nominate deserving volunteers in your chapter.

by Donna Whittaker

The purpose of our annual awards is to confer national recognition each year for outstanding achievement in support of the conquest of myasthenia gravis. In addition to the Founder’s Award and President’s Award mentioned in the article on Esther Land and Patricia Ellsworth Wilson, the following awards were presented on Saturday evening.

The Doctor’s Award was presented to Gregory B. Bulkley, MD in appreciation of his dedicated support for myasthenics through decades of extensive patient education, research and the active pursuit of the most effective thymectomy procedure available.

Dr. Bulkley of Maryland is retiring as Mark M. Ravitch Professor of Surgery at Johns Hopkins University. This man is what every patient wants a physician to be: affable and accessible. His professional credentials speak for his skills as a surgeon, but MG patients need just as much care for their feelings as they do their bodies. Dr. Bulkley is a “good friend” of MGFA. He has never refused a request of the Maryland/District of Columbia/Delaware MGFA Chapter for information, nor an invitation to be a featured speaker. He arrives early, speaks and stays late so that he may interact professionally and socially with MG patients and their families. He enthusiastically encourages all of his patients to become members of local chapters, their support groups and our national organization. He distributes MGFA brochures in his office and clinic.

Dr. Gregory Bulkley receives the Doctor’s Award from Mat Spaan

The Nurse’s Award confers national recognition on a nurse who has made extraordinary efforts (beyond financially-compensated medical services) on a national or local level to assist people with myasthenia or in activities pursuant to the conquest of myasthenia gravis, including client services, research, professional education, lay education, fundraising and administration. This year, the award was presented to Louise E. O’Donnell, RN, MS, NP in appreciation for over 15 years of providing care to MG patients, service and leadership as a member of the Great Lakes Chapter Medical Advisory Board, and in recognition of her extensive research, teaching and commitment to the mission of the Foundation.

Louise O’Donnell of Michigan is currently a neurology nurse practitioner providing long-term management of patients with chronic neurological disorders focusing on optimizing function while reducing risk through medication monitoring and dose adjustment, with particular focus on patients and families struggling with the psychosocial impact of chronic disorders. Louise has lectured extensively to medical and patient groups, including three MGFA Annual Meetings. She has also authored articles published in several medical journals. She is an active member of the Great Lakes MGFA Medical Advisory Board and is instrumental in organizing the nursing segments for the 2005 Annual Meeting.

Louise O’Donnell, recipient of the Nurse’s Award

The Lifetime Achievement Award confers national recognition on an individual who has given more than 20 years of volunteer service to MGFA. It was presented this year Donna Whittaker for her life-long dedication to the mission of the Myasthenia Gravis Foundation of America, Inc. Through her commitment, she has widely contributed to the improvement of the quality of life for myasthenics throughout the world.

The Volunteer of the Year Award is presented to an individual who has performed admirably as a volunteer of MGFA, its chapters and the national organization. As an organization based upon volunteers, it is imperative that we honor these people. This year, the committee selected awards for four categories: Patient Services, Support Group Development, Board Development, and Public Awareness.

The Patient Services Award was presented to Myrna Langston for the extraordinary care and support she provides as the Snowflake Coordinator of the internet Snowflake Committee.

Myrna Langston of Michigan collects snowflakes and cards, making some cards herself, and sends them to myasthenics around the world who are sick or in the hospital. She dedicates her time and caring heart to seeing that people with MG who are having a difficult time receive a card and/or snowflake along with her own personal note of care and concern. She is on MG mailing lists and various online MG support groups for better awareness of myasthenics in need of a card or snowflake. She understands how important caring actions are, as her husband, Sam, has MG.

Myrna Langston and husband, Sam

The Support Group Development Award was presented to Marilyn Ricci for providing over 30 years of devoted service to the Jim L. Walker Arizona Chapter and playing a vital leadership role in the enhancement of support group activities.

Marilyn Ricci, RN, is a very positive dimension to the Jim L. Walker Arizona Chapter’s success and team-building. She is a genuinely wonderful person that the Arizona chapter is proud to have on their team. She is a very active Arizona Board Member. She has spent years doing training, chapter development, and patient support groups. She plays a vital role in doing support group training programs, scheduling speakers, and participating in support group activities statewide.

Marilyn Ricci

The Board Development Award was presented to Dale Wurtenberger in recognition of her exceptional leadership, motivation and guidance in the development of MGnet’s Board of Directors.

Dale Wurtenberger of Pennsylvania has done an outstanding job as MGnet’s President, motivating MGnet’s Board to establish and pursue goals that highly contribute to the fulfillment of MGnet’s mission. Her dedication leads her to actively participate in countless MGnet support meetings, to participate in each issue of MGnet’s newsletter, and to design and maintain MGnet’s “office,” the Web page www.mgfa-mgnet.org. Dale has excelled as a volunteer by giving a significant contribution to the development of MGnet and her continued commitment to motivating and guiding MGnet into becoming a relevant reference to the myasthenic community all over the world.

Dale Wurtenberger

The Public Awareness Award was presented to Bette Swann for her active leadership in a wide variety of activities that significantly contribute to raising awareness of myasthenia gravis and add considerable value to the support activities of MGnet.

Bette Swann of Texas is a dedicated Board Member of MGnet, previously as Recording Secretary and now as Treasurer. She is on the Audit and Nominating Committees. She is also a member of the Dallas/Ft. Worth Chapter. Bette founded “Bette’s Myasthenia Gravis Support Group” (http://health.groups.yahoo.com/group/
bettesmyastheniagravissupport/), better known as the “MG Club of Hearts” in April 2000. The Club has nightly chats and a very active message board and mailing list. The group presently has over 1000 members. Bette has made a considerable effort to help the fight against myasthenia gravis by actively contributing to raising awareness of MG and by helping myasthenics through the significant participation in MGnet’s activities and her competent participation in online support activities.

While many chapters make use of a Web site to provide Internet users with information about their activities, the Best Chapter Web Page Award is presented to a chapter whose site stands out for its innovation and creativity in providing information about myasthenia gravis, the chapter’s activities, and their upcoming events. This year, the award was presented to the Garden State Chapter in recognition of the Chapter’s dedication to patient services, education, public awareness, the provision of comprehensive information regarding myasthenia gravis through their Web site, and their commitment to the mission of the Foundation, in loving memory of Tracy Lynn Allen.

Kevin Haughey accepts the Best Chapter Web Page Award on behalf of the Garden State Chapter

When we are lucky enough to be blessed with so many outstanding volunteers, there is sometimes the need to present honors in addition to the traditional awards previously presented. The following three awards are beyond the scope of the MGFA Awards Committee. They were presented by the Chairperson to those volunteers who have exhibited outstanding dedication to the mission of MGFA.

A Special Recognition Award was presented to Wayne Magee in recognition of his unselfish devotion to the Arizona Chapter and myasthenics everywhere, and in grateful appreciation for dedicated service in fulfilling the mission of the Myasthenia Gravis Foundation of America, Inc. At the Awards Banquet, Wayne Magee, Scottsdale, AZ, was presented with this award for his inexhaustible energy in revitalizing the Jim L. Walker Arizona Chapter. The chapter now has an office, sends newsletters, and has an 800 number, a statewide support network, and a comfortable chapter treasury.

Wayne Magee

A Distinguished Service Award was presented to Dallas A. Forshew, RN, BSN in appreciation for her outstanding service to MGFA—for 28 years as advocate and encourager to MG patients, for ongoing service as lecturer and active participant for the Nurses Advisory Board, and for nine years of leadership and dedicated service on the National Board of Directors.

Dallas Forshew of California has served on the Program Services, Nominating, Research and Professional Education, Meeting Program and Audit Committees of MGFA. She has been a member of the MGFA’s Nurses Advisory Board for over 12 years and has given many lectures to professional audiences on behalf of NAB. She has given many presentations on patient care to myasthenics in Michigan, Utah and California, as well as numerous MGFA Annual Meetings. Her expertise and caring attitude for MG patients are assets that are appreciated.

Dallas Forshew (R) receives the Distinguished Service Award from Esther Land (L)

A Distinguished Service Award was presented to Rae Allyson Green in appreciation for over 15 years of leadership to the Great Lakes Chapter and for 10 years of active participation and direction to the National Board of Directors. Her charismatic enthusiasm and outstanding achievements have advanced the mission of the Foundation.

Rae Green of Michigan has been an inspiration of energy and efficiency to the Foundation. As Executive Director, she assisted the Great Lakes Chapter in rising to a higher level of awareness and financial stability. On the National Board of Directors, she has served on Nominating, Resource Development, and Audit Committees and as Secretary. She continues as a volunteer consultant to the MGFA Board and serves as Vice President of the Great Lakes Chapter Board. Her dedication to fulfilling MGFA goals and her ongoing volunteerism in pursuing financial resources while displaying genuine interest and concern for MG patients are truly assets to our Foundation.

Rae Green

Call for Abstracts

The call for abstracts for the 2005 Scientific Session is now online at www.myasthenia.org/research. The session will be held in conjunction with the annual ANA Conference in San Diego, California on September 24, 2005. The annual MGFA Scientific Session provides an informal opportunity for neurologists and others doing basic or clinical research relating to the neuromuscular junction to discuss their work in progress. Abstracts are due August 22, 2005.

Mestinon® Coupon

Melissa Noble with Valeant made Mestinon® coupons available at the Annual Meeting. Each coupon, worth a $20 rebate, is online at www.mestinon.com. For each coupon used, $10 is contributed to MGFA.

Melissa Noble and the Valeant Pharmaceuticals
booth at the 2005 Annual Meeting.

Coming Attraction!

Chairman of the MGFA Medical and Scientific Advisory Board, James Howard, M.D., is working with Discovery Channel to produce a television show on a patient’s difficult time in getting a diagnosis of myasthenia gravis.

Medical/ Scientific Advisory Board update

by James F. Howard, Jr., M.D.

Informational brochures in development
Among other services it provides to MGFA, your Medical/Scientific Advisory Board actively prepares educational brochures. The latest brochure developed and now available is on Congenital Myasthenia. Brochures currently in development include material on Lambert-Eaton Syndrome, Botulism, Ocular Myasthenia Gravis, and Pregnancy and Myasthenia Gravis. Each brochure will be reviewed on a periodic basis to ensure accuracy and the inclusion of current knowledge.

Clinical trials Several clinical research studies are underway or in the planning stages. Two trials are looking at the treatment effects of mycophenolate mofetil (CellCept®). These trials are still recruiting patients. A multi-national thymectomy clinical trial is under final review by the National Institutes of Health (NIH). It received an excellent priority score (126; 4th percentile) and all involved are awaiting a decision about funding. An ocular myasthenia gravis treatment trial involving 30 centers in the U.S. with 270 patients is under development and will be submitted to the funding agency this summer. Monarsen (EN 101) is currently under investigation in Israel and the United Kingdom. U.S. trials are planned, but a timeline has not yet been established.

Dr. James Howard provides an update on the activities of the M/SAB during the 2005 Annual Meeting.

MG research
The Foundation’s research efforts continue to be hampered by the lack of funding dollars. Several programs are in place. The medical student summer fellowship program provides funding for summer research. This program is used to “hook” medical students on myasthenia gravis as a professional field. The student will work in a laboratory performing research that is of interest to the Foundation. Post-doctoral research awards are given to young investigators to further research in myasthenia gravis and related disorders. Many members of the M/SAB have been recipients of these awards.

Founder
Jane Dewey Ellsworth

National Spokesperson
Suzanne Rogers

Chairperson
Esther M. Land

Vice Chairperson
Ron McFarlane, R.Ph

Secretary
Marie T. Ronnlof

Treasurer
Michael J. Rusinko

Chapter Liaison Officer
Kelly M. Carson

Medical/Scientific Advisory Board Representatives
James F. Howard, Jr., MD
Robert M. Pascuzzi, MD

Nurses Advisory Board Representatives
Madeleine Batenjany, RN, MSN, NP-C
Marcia S. Lorimer, RN, MSN, CPNP

Directors
Emma Ciafaloni, MD
Raina M. Ernstoff, MD, FACP
Melissa Noble
Cora Scarlet, RN, MS
Samuel A. Schulhof
Damon J. Wainscoat
Stanley H. Way

Chief Executive
LJ Taugher

Honorary Director
Patricia Ellsworth Wilson

Pro Bono Counsel
Oppenheimer, Wolff,
and Donnelly, LLP
Minneapolis, MN

Pro Bono Financial Advisor
Anne Kiefer, CFP®

Pro Bono Public Relations Agency
Shazaaam! LLC

Auditor
Ulbrich & Company
Arlington Heights, IL

FOUNDATION FOCUS is published quarterly by Myasthenia Gravis Foundation of America, Inc. If this issue was mailed to you, you are on our subscriber list. If you would like to add, remove or update a subscription, or request that you receive future issues by e-mail, please contact the MGFA national office.