Just about 20 years ago, I was at a conference very much like this one. I had worked for the National Multiple Sclerosis Society for 10 years. I knew almost from day one that I had found my career, serving people with chronic illness and disabilities. I was about to be promoted into a national leadership position - the VP of programs and service. I was on track.
But at that conference, a funny thing happened. I suddenly could not speak more than a sentence or two. My voice simply disappeared. I thought I was tired. I thought I had a sinus infection - and my GP put me on antibiotics. I thought - this will pass. But it didn't. And then my face got numb, and I couldn't chew very well, and couldn't dry my hair, and I knew. I had been the imbedded social worker in the Ohio State University MS Clinic for four years. I knew just enough, to say to my GP - this is no sinus infection - these are neurological symptons.
To read the rest of Nancy's Address, please click here to view the speech as a PDF.
Nancy Law is the newly appointed CEO for the Myasthenia Gravis Foundation of America (MGFA). She is a person with MG and served on the National Board of Directors for nearly nine years. Nancy had retired in 2015 from a 28 year career with the National Multiple Sclerosis Society, and was working as a consultant to the pharmaceutical industry on issues related to patient program design and enhancing doctor/patient relationships before she was asked to talk the MGFA CEO position. To find out more about Nancy, please click here to read her full bio.
The turn of the year has always been a time to reconnect and to revitalize, even as we reflect on accomplishments and progress towards our goals. In keeping with that tradition, we wanted to connect with you to tell you how your national organization, the Myasthenia Gravis Foundation of America (MGFA) is sharpening our focus on community service, volunteers and programs serving patients, cutting edge research, and our ultimate goal of finding a cure. 2015 was a year with significant progress to report.
Click here to see the MGFA progress report
For cooks and those who love to eat – that’s right everyone -- check out Whitney Miller’s latest cookbook, Whitney Miller’s New Southern Table. Whitney’s a friend of MGFA. She’s raised funds for MGFA through the sale of her cookbooks, spoke several times at the MGFA National Conference and more, since her Dad was diagnosed with MG. Whitney’s a Master Chef – a recognition she won at just 22 years old. Since then she’s honed her skills around the world as a judge in competitions and events. In this new book, Whitney focuses on “Preserving traditional family flavors,” and she adds “my own special touches, by lightening up classic dishes without losing flavor, experimenting with different southern ingredients , and using new techniques and cooking methods I’ve learned over the years.” For two fun recipes from the collection see, “Old Fashioned Fudge Popsicles” and “Homemade Ketchup” created with health conscious MGers in mind. Consider Whitney Miller’s New Southern Table as a gift for the cooks in your life. Get your copy here.
“Do you know that animals with MG usually have the same ocular symptoms as humans? Thank goodness, ‘cause my mommy says I have the most beautiful puppy eyes!” – MG Super Dog Bailey
Teens Camy, now in college, and younger sister Claire, took a chance and entered the Rack Room Shoes (RRS) 10th Anniversary Models Wanted contest and won. When asked what charity they would like the winning $5,000 to go to, they chose Myasthenia Gravis Foundation of America (MGFA) because their close family friend, Shelley Holt, is an MG patient.
Claire, who is 14, says that she’s known Shelley and sons Collin and Cooper, almost her whole life and they are “very dear to her heart.” When Camy asked Claire who they should honor with the donation, they both thought of Shelley immediately.
Shelley says that when she heard, she was very overwhelmed and humbled. “The girls are very self-less,” she said, “and I was so touched that they thought of me and MG.”
The girls’ mother, Sandi, originally entered them into the RRS contest back in 2011 and they won back then. That time it was a surprise – because Sandi didn’t want them disappointed, she only told them after they had won. Now 3 years later, when RRS invited former winners to enter their 10th Anniversary Models Wanted contest, the girls won again. Now, they are featured in RRS’s Back to School promotions. Camy, who attends Middle Tennessee State University, is happy for this opportunity because it gave her and Claire a fun time to be together.
Shawn Brooks of Rack Room Shoes says they are happy to help MGFA out as part of their Corporate Social Responsibility efforts. RRS has 385 retail stores nationwide and they’ve used real customers instead of models in their seasonal advertisements through their annual Models Wanted contest. The Stout sisters were voted among the top families on the RRS Facebook page making MGFA a winner!
June is National Myasthenia Gravis Awareness Month
Help us continue to unite for a cure! You can now download the 2014 June Awareness poster to share with your Chapter and community.
Download MGFA's Awareness poster to use year-round.
During the month of June, MGFA’s official “MG Awareness Month,” the national office, as well as chapters and individuals throughout the country, is involved in a variety of activities to promote awareness. These activities include obtaining proclamations from local and state officials, providing information about MG to the media, holding MG awareness events, disseminating information via social networks, and distributing MGFA’s “United For A Cure. A World Without MG” June Awareness Month poster. Several states and cities, including New York, Massachusetts, Nevada and most recently Connecticut, have issued proclamations, recognizing the month of June as Myasthenia Gravis Awareness Month!
There is a tremendous amount of ongoing MG awareness nationally and internationally, and several exciting things happening to further promote the mission of the MGFA to finding a cure for myasthenia gravis, improving treatment options, and providing information and support to people with myasthenia gravis through research, education, community programs, and advocacy:
· The MG Patient Registry™ launched last spring continues to grow with over 2,000 individuals registered to date, MyMG™ phone app has been downloaded by over 3,000 individuals, has been translated into Japanese and is being translated in to several other languages making it truly international in its scope.
· The MGFA is excited and proud to have received The Child Neurology Foundation’s Advocacy Award for 2013.
· The MG Walk™, a key component of MGFA’s awareness and fundraising programs, continues to grow each year and is generating greater awareness about MG on the part of the general public while raising money to fund research initiatives, develop educational materials and programs. The Walks have raised close to $2 million in the first three years.
· Two MGFA chapters have made significant gifts in support of’ MGFA’s research initiatives: The Garden State New Chapter, $100,000, and the Georgia Chapter, $10,000.
· The MGFA just concluded a very successful National Conference on April 17-18, 2014, in Philadelphia, PA. There was a tremendous amount of enthusiasm, research presented and ideas explored to better serve the MG community.
Although June Awareness is just one month, awareness efforts at all levels will continue throughout the year in fulfillment of MGFA’s mission to provide information and support to people with myasthenia gravis through research, education, community programs, and advocacy.
You can help us spread awareness by educating yourself and others about MG.
Enjoy Summer with a Popsicle
FOX Television MasterChef Season One winner and cookbook author Whitney Miller, who has been an advocate of raising awareness and funds for MG since her father John Miller was diagnosed, has been active in June and July, promoting the MGFA’s partnership with ZOKU and Miller’s popsicle maker fundraiser. Whitney has appeared in the media on ABC Birmingham News, Mississippi Public Broadcasting, Fox 8 New Orleans and in a story in the Picayune Item.
ZOKU is donating 20% of each of their popsicle makers sold on their site, www.zokuhome.com, when someone uses the code MGFA during checkout.
Whitney reports that the fundraiser has sold more than 100 popsicle makers for a fundraising total of close to $500.
You can view Whitney’s “Cooking Tips if You Have MG” on her web site at:
In Memoriam: Alfred Jaretzki III, MD
Alfred Jaretzki III, Professor Emeritus of Clinical Surgery at Columbia Presbyterian Medical Center in New York City died at age 94 on May 29, 2014. He was also a valuable member of Myasthenia Gravis Foundation of America’s Medical/Scientific Advisory Board. Read more here.
Launched under the leadership of the MGFA in 2011, MG Walk continues to gain momentum as it raises awareness about MG, energizes people to fight the disease and generates funds for research. After 13 MGWalks so far this year, $452,513 has been raised toward a year-end goal of $750,000. The Tri-State Walk kicked off June Awareness Month on June 1, and the New York-based event raised $176, 729; special congratulations to the efforts of Jasmine Snow and her team for raising close to $70,000. Fifteen walks are scheduled for the remainder of 2013. In addition, the “Virtual MG Walk” is ongoing, and anyone, anywhere can participate. For information on the Walk, to find a Walk near you, and to register, click on http://www.mgwalk.org/mgwalk/findevent_register.asp or call 855-MG-Walks (855-649-2557).
Alert to Patients Experiencing Problems with Medications:
If you are experiencing any problems with your medications, including such problems as crumbling or disintegration, please file a MedWatch Report with the Food and Drug Administration. You may file your complaint online here. Please also contact the MGFA office at firstname.lastname@example.org once you have filed your complaint.