E-Update Winter 2015 Edition
February 11, 2015
MGFA News
2015 National Conference
Update with info from Kathy The 2015 National Conference will be held in San Diego April 28 through May 1at the Wyndham San Diego Bayside in San Diego,CA. To make your hotel reservations and register for the conference click here. Program details will be announced soon. To view the 2014National Conference video presentations go to . The Conference provides a wonderful opportunity to learn and share while making new or catching up with old MG friends from around the U.S. Included in the program this year are sessions on relaxation, exercise, gender issues and MG, clinical trial participation, and healthy lifestyles to name just some of the topics being explored. In addition, MGFA is pleased that Dr. Bhupendra O. Khatri, Wheaton Fransican Health Care, Medical Director of the Center for Neurological Disorders and author of Healing the Soul—Unexpected Stories of Courage, Hope and the Power of Mind, will present on the power of positive thinking on Thursday, April 30th. We hope to see you in San Diego!
MG Walk
RICH TO PROVIDE CONTENT--Add updated info from Walk Office:Has MGFA officially announced the Grammy Raffle winner? Should winner's name be in here? All 2014 MG Walk registrants received one entry into the raffle for every $1,000 they raised. The winner had the opportunity to attend the Grammys on February 8, 2015 to see live performances from 2014 hottest acts and watch music history being made. We have launched the 2015 MG Walk schedule as the Campaign enters its 5th year andwe are moredetermined than ever to raise awareness and vital funds for the MG community throughout thecountry. If you have any questions or need more information, please call 855-MGWalks (855-649-2557) or email . Follow the MG Walk Campaign at Facebook.com/MGWalks; Twitter.com/MG_Walk; and Pinterest.com/MGWalk. Thanks to everyone who has helped the MG Walk over the last 4 years to take tremendous strides toward the ultimate "Finish Line" -- a world without myasthenia gravis.
Celebrating 5 Years Already: 2015 MG Walk Campaign
Hoping to build on the record-breaking results of 2014, the 2015 MG Walk Campaign is off and running…as the MG Community celebrates 5 years of increased awareness and fundraising!
MG Walks in Florida and Georgia will formally kickoff the season in March…as will first-ever MG Walks in North and South Carolina!
Please visit to see the other Spring events launched and register today(Fall MG Walks will launch in the coming weeks). The website has some updates including the new “MGagement Program”, which offers more ways to earn well-deserved recognition as well as rewards and prizes…and helps MG Walkers maximize their engagement, awareness & fundraising efforts!
If you have any questions or need more information, please contact the MG Walk office at 1-855-MGWalks(649-2557) or please follow the MG Walk Campaign atFacebook.com/MGWalks,Twitter.com/MG_Walk, andInstagram.com/MG_Walk.
Thanks to everyone who helped the MG Walk over the last 4 years, make tremendous strides toward the ultimate "Finish Line"…a world without myasthenia gravis! We look forward to seeing you at an MG Walk around the country in 2015!
NEW MGFA FUNDRAISING PROGRAM
The MGFA is thrilled to announce a new awareness and fundraising initiative…Team ENDuranceMG! This new and exciting program will not only allow the MG community the ability to raise funds for the MGFA and spread awareness about myasthenia gravis, but this campaign will enable MG constituents and their family & friends to train and accomplish a “bucket list” activity such as a half or full marathon, triathlon or biathlon or even an obstacle course race in mud! Building on the success and model of the MG Walk, this new awareness and fundraising endurance program will bring us even closer towards our ultimate goal and finish line…an END to MG!
Stay tuned in the coming weeks for the formal launch ofTeam ENDuranceMGincluding the new website. In the meantime, please call1-855-649-2557 if anyone has questions or wants to hear more details about the Program.
Research News
Confirm if it's OK to include in E Update.I HAVE ASKED TOR & SAM WHO ARE AWAY AT A CONFERENCE. At its November 2014 meeting, the MGFA Board of Directors approved the following research investments:
- Agreed to continue the RFA (High Impact Pilot Projects) program in 2015 at $100,000 (2 x $50,000).
- Approved a Transformative Research program at $250,000 to commence in 2015.
- Agreed to continuing funding for the MG Patient Registry for over $130,000.
The board also approved a three year MGFA-American Brain Foundation fellowship commencing July 1, 2016. The total of MGFA's share was set at $160,000 over a three year period.
Request for Valuable Information
Are you a Parent of an MG Child? Ifthe answer is “yes,” MGFA would like to hear from you. Do you have an uplifting story of love, courage or hope to share about your child and how you and your family have coped with MG? Your story can be about your daily challenges and triumphs. It can be about how you manage and what makes it all worthwhile. If you have such a story and you would like to share it, please let us know. MGFA will include selected stories in the next Foundation Focus newsletter and all stories will be included on the MGFA website. Please keep your story to 250 words or less. Stories may be edited. To participate, please send your story to by March 9, 2015. High resolution JPEG or Gif photos are welcome and may or may not be used. Please provide your name and your child’s name, plus your phone number and an email address in case MGFA needs to contact you. Thank you. Kathy, a photo release will be needed with the submission or in a reply email to those who submit a photo. It’s standard practice, especially if the photo is of a minor child. YES, WILL DO.
Share Your Reading List. Have you enjoyed a book that has helped you cope with MG, become a better caregiver, improve your life, or enhance your mood? If the answer is yes, share your good fortune! Tell us the title of the book and the author’s name. In a few sentences tell why the book was so valuable to you and how you think other readers might benefit from reading it too. MGFA will include selected recommendations in the next Foundation Focus newsletter and all will be included on the MGFA website. Please keep your “book report” to 200 words or less. Content may be edited. To participate, please send your reading recommendations to by March 9, 2015. Please provide your name, plus your phone number and an email address in case MGFA needs to contact you. Thank you.
National Organization for Rare Diseases (NORD)
Rare Disease Day, February 28, 2015: NORD, of which MGFA is a member, is set to celebrate Rare Disease Day 2015 on February 28.th The official theme for this year's international event is "Living With a Rare Disease.” For the MG Community this is a chance to bring attention to MG and the challenges that we and all rare disease sufferers face.
MGFA encourages everyone who has been affected by MG to be involved. There are many ways to do so.
- Go to MGFA's home page for information
- See MGFA's post on Facebook: scroll down to December 8th.
- Talk to friends, co-workers and neighbors about MG and about why rare diseases are such a challenge. If each of us spoke to 3 people just letting them know what MG is and the challenges those with MG face we could triple awareness on just one day.
- Share your story on Facebook, YouTube or through other social media.
- Pick up the “I Support Rare Disease Day “ image, , and post it to your social media.
- Write your local and national elected officials about MG and why awareness of this disease and more support for research are so needed.
- Celebrate this year’s theme, “Day by Day, Hand in Hand” by taking a photo with your Support Group, family or friends and share it through
- Visit the websites below and learn about all the events taking place in the U.S.
or the National Organization for Rare Diseases, , in the U.S. or EURODIS the European agency that founded Rare Disease Day in 2008, .
U.S. Department of Health and Human Services (HHS)
Precision Medicine Initiative: On February 3rd, HHS released information about the President's new Precision Medicine Initiative. The agency described the initiative as “a bold new enterprise to revolutionize medicine and generate the scientific evidence needed to move the concept of precision medicine into every day clinical practice.” HHS described Precision Medicine as an “emerging approach for disease treatment and prevention that takes into account individual variability in genes, environment, and lifestyle for each person.” HHS further stated thatsignificant advances in precision medicine have already been made for select cancers, but the practice is not currently in use for most diseases. The plan is to help make precision medicine the norm rather than the exception with an investment of $215 million for the National Institutes of Health (NIH) and Food and Drug Administration (FDA) for research and development. To learn more about the initiative, click onPrecision Medicine Initiative
National Institute on Aging (NIA) and National Library of Medicine (NLM)
The NIA and NLM offer valuable information on the website “NIH Senior Health” that is not always limited to the older population. The NIA and NLM, both institutes of the National Institutes for Health (NIH), collaborate with other NIH institutes such as National Cancer Institute (NCI), the National Center for Complementary and Alternative Medicine (NCCAM), the National Eye Institute (NEI), the National Heart, Lung, and Blood Institute (NHLBI), the National Human Genome Research Institute (NHGRI), as well as other federal agencies, such as the Centers for Disease Control and Prevention (CDC). From time to time, this MGFA newsletter will include news items and suggestions provided by the NIH Senior Health website. Readers may go to NIHSeniorHealthfor more information and to subscribe.
Examples of recent items in Senior Health are recommendations such as:
- Create and maintain a record of your family’s health history. Learning about your family's health history can help you discover your genetic heritage and risks, and it can be a valuable tool in helping to lower your family’s risk for disease. To learn about how to obtain and create a family health history, go to Learn your family’s health history. The following link provides information and suggestions. National Human Genome Research Institute (NHGRI)
- If you were born between 1945 and 1965, talk to your medical professional about testing for the Hepatitis C virus (HCV). See details about getting tested for Hepatitis C. The CDC describes HCV as a “silent disease” because people can be infected and not know it. For more information go to
- The CDC's chart listing vaccinations for adults is accessible by clicking on
2014 Recommended Immunizations for Adults by Age. The chart has been updated for 2015.
MGFA RECOMMENDS THAT INDIVIDUALS WHO HAVE MG CONSULT WITH THEIR PHYSICIAN OR OTHER HEALTH CARE PROVIDER BEFORE UNDERGOING ANY MEDICAL TESTS OR RECEIVING INNOCULATIONS.
White House Conference on Aging (WHCoA): Executive Director Nora Super issued a statement on February 3rd stating that the president's 2016 budget contains new and enhanced initiatives that support older American's. They address the four focus areas of the 2015 White House Conference on Aging: retirement security, healthy aging, long-term care services and supports, and elder justice. For more information, go to President’s 2016 Budget
State Supreme Court Decision
Workers' Compensation for disabled worker who has MG
On January 30, 2015 the Alabama Supreme Court issued ruled that a Madison Academy custodian who has myasthenia gravis was permanently disabled after exposure to work-related chemicals and should be compensated. In early 2014, a circuit court judge found that the chemicals used for cleaning floors and stripping gym floor wax thad caused the custodian to suffer a work-related injury from exposure in 2011. The exposure aggravated her myasthenia gravis. The Supreme Court agreed with the lower court ruling. To view the Supreme Court decision, go to