The 2018 MGA Holiday Party was held on Sunday, November 18, 2018, at the Venetian Club in Madison Heights, MI. This was a new venue for 2018, but everyone enjoyed a great meal and the children had a great time singing holiday songs and receiving individual gifts from Santa! A special thank you to Emily Hillmer for being Santa’s helper and arranging for the gifts to be purchased, wrapped and delivered for all 29 children present. Beautiful poinsettia plants from Eckert’s Greenhouse and MGA glassware were raffled off at each table. Entertainment was provided by Rick Jones, with his wonderful piano playing. His piano playing of holiday songs was very well received and we look forward to having him return next year.

So many wonderful volunteers this year – Dick Giba, MGA Board of Directors President, was our Master of Ceremonies.  Heather Hosking did a great job directing everyone with a rousing rendition of the 12 Days of Christmas and keeping the children occupied with singing songs while anxiously awaiting the arrival of Santa Claus.  Gary D’Alessandro (our 2018 Sosin Volunteer of the Year) assisted the MGA staff with set-up, registration and decorations to make this holiday event beautiful.  Heather and her dad, Mark Hosking, did wonderful work selling 50/50 raffle tickets which contributed $180.00 to MGA.  Thank you also to Andy and Linda Lukacs for delivering the Santa gifts.   And last, but not least, thank you Santa for taking time out of your busy schedule to visit us.  Thank you, everyone!

Many families brought many members of their extended family, such as sisters, in-law family members, grandchildren and more to MGA’s opening of the Holiday season.

Please plan to join us next year…  We promise a good time!!


Diet is a Four Letter Word

Image of healthy foods

By: Kay Connelly
Sosin Education Symposium – October 22, 2017

Kay Connelly provided information about diet/exercise and the struggles with the neuromuscular disease myasthenia gravis. The information was well received and many questions followed, providing an opportunity for Dr. Raina Ernstoff to provide additional input. Kay firmly believes that it has helped her improve her stamina as well as initiating a healthier lifestyle.

You can review the presentation on diet and exercise for those with myasthenia gravis by clicking here or request a copy of the DVD from the MGA Office by calling (248) 591-4419.

Kay Connelly graduated from The Ohio State University in 1985 with a B.S. degree. She was diagnosed seronegative MG in 2003. She is actively involved in our Ann Arbor support group. Kay loves to travel with her husband Will who is a pediatrician, and she adores her two terriers. She was diagnosed with Sjogren’s Syndrome, an autoimmune connective tissue disease, this past January.

June is Myasthenia Gravis Awareness Month

June is MG Awareness MonthJune is Myasthenia Gravis Awareness Month and we wanted to remind you of our annual golf outing to raise funds to support those affected by MG and their families. In order to give a human face to this disease we also wanted to share an excerpt from a letter written by Mark Hosking, our golf outing chairman, to all of his friends and colleagues, and a newsletter article written about his daughter Leanne.

“The Myasthenia Gravis Association (MGA) is a nonprofit organization dedicated to serving the needs of people with MG, a neuromuscular disease. The Association assists patients and their families in coping with this disease through education, diagnosis, treatment and support.

Myasthenia Gravis affects all races, genders and at any age.  Most cases of MG are diagnosed in young women (Under 30) and older men (Over 55).  MG is not contagious. The major symptoms of Myasthenia Gravis are: blurred and/or double vision, involuntary drooping of the eyelids, slurred speech, weakness in facial muscles, difficulty in chewing and swallowing and sometimes breathing, difficulty in walking and talking and unusual tiredness in the arms and legs. Myasthenia Gravis is not a “well known” condition, but there are 36,000 Americans that have this disease right now.” – Mark Hosking (Mark’s daughter was diagnosed with MG in 2010.)

LIVING WITH MG – Leanne Hosking

If you met Leanne, you’d probably never guess she is battling a neuromuscular disease.   She is a lively 32-year-old woman who works full-time, exercises daily, and enjoys traveling the world.  But this wasn’t the case three years ago when she suffered from severe muscle weakness and fatigue.  She couldn’t drive at night and found it difficult to complete everyday tasks like getting dressed and brushing her teeth.  She battled double vision and scarily navigated her way through immigration in Germany with one eye covered because she refused to cancel a preplanned European vacation.

She was diagnosed with Myasthenia Gravis at Leanne Headshotthe age of 29 after suffering from noticeable muscle weakness in her arms. Shortly after diagnosis, she was referred to have a thymectomy, for which she sought Dr. Mark Orringer, thoracic surgeon at the University of Michigan Health System. Dr. Orringer referred her to neurologist Dr. James Teener for plasma exchange in preparation for the surgical removal of her thymus gland.  The actual surgery presented no major problems for her physically, but she still has not achieved remission of symptoms as hoped.  She is still under the care of Dr. Teener at U of M with her current course of treatment including two oral medications, CellCept and Mestinon, and biweekly plasmapheresis treatments.

Leanne works as a court clerk in the Detroit court system.  Luckily, she has a very supportive team of coworkers that permits her to receive plasmapheresis during work hours at the U of M Hospital in Ann Arbor.  On her current treatment plan, Leanne’s strength has stabilized and she has resumed her normal activities.  Leanne loves riding her bike and averages about 60 miles a week in the summer.  In addition to biking, she plays tennis, dances, and weight trains all to combat her fatigue and prevent muscle atrophy.

Since her diagnosis and surgery, she has traveled to Florida, Hawaii, and the Dominican Republic, as she finds the warm weather to be a favorable environment for her physical strength and well-being.  Leanne copes with the physical and mental challenges this rare disease presents with the help of her amazing support system of family, friends, and fellow MG patients.