The M.G. Rally -', ...~...I.'",... Why Should You Become a MGFA Volunteer? Mark Your Calendars!

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1 The M.G. Rally Newsletter of the Carolinas Chapter, Myasthenia Gravis Foundation of America, Inc January 2006 Volume 7, Issue 1 Inside this Edition... Carolinas Chapter Meeting Page 1 Volunteer Page 1 Directions to Meeting Page 2 Membership renewal Page 3 History & Purpose MGFA Page 4 Medical Identification Tags Page 5 MGFAAnnual Meeting PageS Save the datel Next Meeting is March 26, 2006 Mark Your Calendars! Carolinas Chapter Meeting Saturday, January 21, 2006 The Carolinas Chapter of the Myasthenia Gravis Foundation will hold an important meeting on Saturday, January 21 at The Exchange at Meadowmont, 1414 Raleigh Road (Highway 54), Chapel Hill, NC. 11 AM 12PM 1 PM 2PM Board of Directors Meeting Join Us for Lunch & Time to Chat Speaker Business Meeting Program Speaker: Doris Weaver From Medicare Today Topic: Everything You Need to Know About Medicare Part 0 MG patients, their family members, and friends are invited to participate in this especially informative meeting. The information presented is important to all those who need to understand the new and extremely complicated Medicare prescription drug coverage plan. Doris Weaver has talked to numerous lay and medical groups about how to make the best selections when choosing a Medicare Part D plan. Medicare Today is a broad-based partnership of organizations......~...i.'", ', groups, employers, and others. The mission of this nonpartisan partnership is to educate and infonn Medicare beneficiaries, the media, and the public at large on the new benefits provided through The Medicare Prescription Drug, Improvement and Modernization Act (MMA). Why Should You Become a MGFA Volunteer? The Carolinas Chapter needs your help! Our chapter is operated totally through the efforts of individuals just like you. We have absolutely no paid staff. Individuals volunteer because they find helping people with MG and their families to be rewarding, exciting, and self-fulfilling. We have a number of volunteer needs that we hope you will consider. These needs include general chapter leadership, program management, fundraising, newsletter production, meeting and support group planning, public awareness activities, and much more. If you have the talent (we can train you) and the commitment to serve the MG community, we want to hear from you. Why should you volunteer? People enjoy volunteering because they: Live longer (studies have shown this to be true)! Get to help others and feel needed Share their skills Gain new skills Assure that limited resources are wellallocated Demonstrate a commitment to a cause Have personal experience with a cause Want to make new friends Like to be part of a team Like to have fun! Want to make an impact.are asked.to -help We are asking for your helpl Please volunteer to assist the Carolinas Chapter. Join us at our Board of Directors Meeting on January 21 at 11 AM to learn more. You can also atcarolinasmgfa@nc.rr.com or call (919)

2 Directions to The Exchange at Meadowmont 1414 Raleigh Road (Highway 54) Chapel Hill, NC DIRECTIONS From Raleigh and Durham: Travel West on 1-40 and take Exit 2738 which merges onto Highway 54 (West). Proceed on Highway 54 (West), and at the 5th traffic light, turn left into The Exchange at Meadowmont. From the driveway, turn left into the parking lot of the building on your left (1414 Raleigh Road). From Chapel Hill: Travel East on 1-40 and take Exit 273. At the top of the exit ramp, turn right onto Highway 54 (West). Proceed on Highway 54 (West), and at the 4th traffic light, turn left into The Exchange at Meadowmont. From the driveway, turn left into the parking lot of the building on your left (1414 Raleigh Road). Enter at Exchange West Traveling west on Hwy 54 towards Chapel Hill. The Exchange at Meadowmont is located just beyond the Friday Center (on the same side ofhwy 54). 2

3 CAROLINAS CHAPTER 2006 Membership Renewal Last Name ~ First Name _ Street City State ZIP _ Telephone <-) ~ Annual Membership $150 MG patient who is unable to pay 0 I want to volunteer to help the Carolinas Chapter 0 Please check: 0 MG Patient 0 Relative 0 Friend 0 Health Professional Make checks payable to: Carolinas Chapter MG Foundation A" contributions are tax-deductible. Donation $ _ In memory of In honor of A card should be sent to Address _ City State Zip Donations sent to our chapter are a nice way to honor that special person you know. We will send an acknowledgement the individuals that you designate without mentioning the amount of your donation. to Please return to: Carolinas Chapter Myasthenia Gravis Foundation of America, Inc. 506 East Forest Hi"s Boulevard Durham, North Carolina We are interested in hearing your comments. -! 3

4 History and Purpose of MGFA: The Efforts of Volunteering Jane Ellsworth founded the Myasthenia Gravis Foundation of America, Inc. 54 nearly years ago. When her teenage daughter, Pat, was diagnosed with MG, there was very little information available. Pat stated that "Characteristically, my mother wanted to do something to help me, but she was stymied because there was no organization in which she could work". I said to my mother, 'Why don't you start an organization for myasthenia gravis, my disease?' She had already thought of doing that, but had not known how to go about it. My mother founded the Myasthenia Gravis Foundation by learning how to do it step by step and then simply doing it!" Until a cure is found, the MGFA will continue Jane Ellsworth's effort to help people and their families through the difficulties of managing and living with MG. Today's Organization and Patient Services MGFA is a nonprofit voluntary health agency that is comprised of people with MG and others concerned with helping us. The National Office is based in St. Paul, MN. The primary activity of MGFA is patient services. Our National Office and our chapters deliver these services, which include the provision of literature on MG and its treatments, a quarterly newsletter, over 100 support groups for patients and families (primarily managed by our chapters) and contact information for physicians serving on our Medical/Scientific Advisory Boards who are interested in treating people with MG. Printed literature is available as well as a highly developed website. On our toll free line, we receive numerous calls each day. Our office staff mails out packets of information about MG to patients and professionals who requested them. Numerous web Inquiries arrive every day from the US and around the globe. Although we cannot give personal medical advice, we try to give personal responses that help people get the information that they need to better manage their lives with MG. Medical Professionals and Research MGFA has two professional advisory boards. The Nurses Advisory Board is comprised of about 30 neuromuscular nurses and others interested in the nursing care of MGpatie/"ltS. This group is active in writing and reviewing MG literature for patients and families. MGFA offers a nursing research fellowship for nutsesinteresledinmg research. The MGFA Medical/Scientific Advisory Board (M/SAB) is comprised of over 80 medical professionals throughout the US Interested in MG clinical care and research. We are currently expanding this group to include international corresponding members. MGFA funds research in the form of post-doctoral and medical/graduate student fellowships. Medical Conferences and Symposia MGFA sponsors important gatherings for medical professionals. Each year, we sponsor a Scientific Session in conjunction with the meetings of the American Neurological Association. Last year's session was held in San Diego and was attended by a large number of MG researchers. There was a half day of platform and poster presentations on MG research with time for important professional dialogue. Every 5 years, MGFA sponsors an International Symposium in conjunction with the NY Academy of Sciences, during which time there are more than 100 research presentations over a 3-day period. A detailed important publication of the presentations is produced for medical professions as a result of that meeting. The next International Symposium will take place in Chicago in The Carolinas Chapter The Carolinas Chapter provides services to MG patients and their families in North and South Carolina. Our Chapter has no paid staff and all work is done by volunteers. We sponsor regular meetings, support groups and newsletters. We maintain a toll free number for inquiries and have . At our chapter meetings, information sessions about MG take place, often presented by members of our local health professionals advisory board. Growing Up With MG All of this is very important to me because I have MG too. That's why I volunteer my time to the Foundation and its important work. I was diagnosed when I was 10 and have experienced just about everything possible with this disorder. I am thankful that caring people from MGFA supported my family during those early days and beyond. I remember well the fear that my family and I experienced during the diagnostic period and early days of treatment -- the ventilators needed to breathe, and the inability to speak or eat. Caring people from MGFA helped to support and.., advanced treatments, I now lead a full and productive life for which I am thankful. Now it is my turn to belp others IJntU we find that cure. Will you join me? I sure hope so. Marcia Lorimer Chairperson, Carolinas Chapter 4

5 Medical Identification Tags There are a number of medical information identification tag services available for people with chronic disorders like myasthenia gravis. Possibly the most well known of these services is MedicAlert. Wearing a medical identification tag can protect you in an emergency or urgent situation because emergency medical services personnel (EMS) have been trained to look for them. The medical identification tag is worn on a bracelet, necklace, or placed on a key ring. It is engraved with a personal identification number, your primary medical conditions, and a 24 hour phone number for the service's emergency response center. At the time of membership application and purchase of the service, you complete a personal medical history form, which can be updated at any time. The history will include a record of your medical conditions, your physician contact information, your personal emergency contacts, and a list of medications that you are taking and their doses. The medical history will also include any allergies, implanted devices, health insurance information, and drug contraindications. This medical history information is kept at the response center. If you find yourself in an emergency situation, EMS will contact the 24 hour response center operated by the medical identification tag service. The response center can transmit your computerized medical profile to EMS or the emergency department. In addition to a medical identification tag, MedicAlert is now offering the E-HealthKEY, which they advocate as an intelligent self-contained USBenabled tool that is designed to launch your critical medical information in emergencies and allows you to carry your complete personal health record at all times. For more information about MedicAlert, you can visit them on the internet at or at the contact information below: MedicAlert Foundation International 23,23 Colorado Avenue Turlock. CA Phone 24hrs/day - 7 dayslweek from outside the U.S. Fax PLEASE READ THIS IMPORTANT DISCLAIMER: The articles in this._.... informationand edueationonli'rhey are not a substitute for professional medical advice or a medical examination. If you have questions about your health care or the health care of another, always seek the advice of your physician or other qualified health professional before making any adjustments to your medicaltherapy. 5

6 IIICarolinas Chapter Myasthenia Gravis Foundation of America, Inc. 506 East Forest Hills Boulevard Durham, Ne Address Service Requested CHANGE OF CONTACT INFORMA TION Please be certain to inform us of any change in your address so we can keep our mailing list up to date. If you want to be removed from our mailing list, we would appreciate knowing that too. The chapter pays a substantial fee for returned mail. Please print all information clearly and return to: Carolinas Chapter MGFA 506 East Forest Hills Boulevard, Durham, NC THANKS! Last Name First Name _ Street ~ -_ City State ZIP _ Telephone ('--_-J) ~ _ Please check one: This is new information. Please remove my name from the mailing list. Comments: 6