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!!
The Sosin Education Symposium was held on Sunday, October 21, 2018, at the Inn of St. Johns in Plymouth, MI. Everyone enjoyed a great meal, followed by the awards presentation and speaker, Dr. Kavita Grover, Senior Staff Neurologist in the Department of Neurology at Henry Ford Hospital and an Assistant Professor, Wayne State University.
The Sosin Award was presented to Dr. Raina Ernstoff and her husband, Sandy Hansell, for their generous support of MGA. Dr. Ernstoff has supported MGA for over 20 years, often referring her patients to MGA for ancillary support services.
The Volunteer of the Year Award was presented to Gary D’Alessandro. Gary has assisted MGA at our golf outings, picking up donated items, working on the day of the event and giving financial support to MGA as well.
Congratulations to our 2018 award winners!
You can request a copy of the DVD from the MGA Office by calling 248-591-4419.
With the upcoming flu season fast approaching, MGA wanted to make you aware of information found on the internet regarding Myasthenia Gravis and the Influenza vaccine. NOTE: The content of this article is being provided for informational purposes only. Please consult with your own doctor regarding the Influenza vaccine.
Safety of influenza vaccination in patients with myasthenia gravis: A population‐based study
Lorne Zinman, MD., MSc Jessica Thoma BSc Jeffrey C. Kwong, MD., MSc Alex Kopp BA, ThÉRÈSe A. Stukel, PhD., David N. Juurlink MD, PhD
First published: 09 November 2009 https://doi.org/10.1002/mus.21440 Cited by: 14
Influenza vaccination has been associated with adverse events including Guillain–Barré syndrome. Because the safety of influenza vaccination in patients with myasthenia gravis (MG) has not been established, some clinicians discourage vaccination for these patients. We explored whether the administration of influenza vaccine to patients with MG might increase the risk of myasthenic crisis. Using population‐based healthcare data from Ontario, Canada, from 1992 to 2007, we utilized the self‐matched, case‐series method of detecting adverse events following vaccination. We studied patients with established myasthenia who were hospitalized for MG within 42 weeks of influenza vaccination. We defined the primary risk interval as the 6 weeks following vaccination. Between January 1, 1992 and March 31, 2006, we identified 3667 hospital admissions for MG. No seasonal trend in MG admissions was evident. In 513 instances, hospitalization occurred within 42 weeks following vaccination in patients previously diagnosed with MG. Among these patients, 266 (52%) were men, the median age was 74 years, and 86 (17%) had previously undergone thymectomy. The estimated relative incidence of admission for MG in the primary risk interval compared with the control interval was 0.84 (95% confidence interval 0.65–1.09). We found similar results in stratified analyses according to gender, age, and thymectomy status. Vaccination of patients with MG against influenza was not found to be associated with exacerbations of the disease. Our findings do not support the practice of withholding influenza vaccination in patients with MG. Muscle Nerve, 2009.
CDC Recommends Flu Shot
Posted January 3, 2015 at http://www.myastheniagravis.org/cdc-recommends-flu-shot/
With colder weather comes flu season. The Center for Disease Control (CDC) recommends a yearly flu vaccine as the first and most important step in protecting against this serious disease.
The CDC notes that some groups should especially get the flu vaccine because they are at higher risk for severe complications if they get the flu. This includes those who have chronic neurological disorders and those who are taking immune suppressant medications. The CDC recommends that these groups avoid the nasal spray vaccine because it is made with a live virus.
Kay Connelly, MGA member and co-chair of the Ann Arbor Support Group, sent the following information to the MGA office on an FDA approved drug treatment for generalized myasthenia gravis. It is called Soliris and Kay received the information through mda.org.
We have some exciting news to share with you: The FDA has approved Soliris to treat adults with generalized myasthenia gravis.
Soliris is a terminal complement inhibitor that targets a part of the immune system called the complement system, which is responsible for helping antibodies clear damaged cells and potentially toxic microbes that could cause infections. In MG, antibodies whose job it is to target these toxic pathogens instead inappropriately recruit the complement system and target the space across which nerve fibers transmit signals to muscle fibers, called the neuromuscular junction (NMJ). Soliris is thought to work in MG by inhibiting the complement pathway to prevent destruction of the NMJ. Soliris is not a cure, but it may lessen the symptoms experienced by people living with generalized MG.
For more on this exciting news, read FDA: Soliris is Approved to Treat Generalized MG in the United States, and be sure to check back at mda.org for updates.
At the present time, Soliris is very expensive.
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.
The Sosin Education Symposium was held on Sunday, October 22, 2017, at the Inn of St. Johns in Plymouth, Michigan. Everyone enjoyed a great meal, followed by the awards presentation and speaker.
The Sosin Award was presented to Dale Shomo for his service on the MGA Board of Directors, chair or co-chair of MGA special events along with his wife, Diane, as well as many volunteer positions with MGA. Dale continues to promote MGA to family and friends and is also a Vietnam Veteran, having served our country with distinction. Congratulations and thank you for your service, Dale!
The Volunteer of the Year Award was presented to George Kingston for his many years of volunteerism at MGA, especially the golf outing, where he made an excellent golf hole spotter! George does not live in the area and travels very early in the morning to help out at our events, offering to help wherever needed. George also donates to MGA via the United Way campaign at work and has designated donations annually to MGA, which are matched by General Motors. Congratulations and thank you, George, for all you do!
You can request a copy of this event on DVD from the MGA Office by calling (248)591-4419.
The Social Security Counseling Center is offering a seminar on “The Advanced Course of Social Security Disability & SSI” scheduled for October 18, 2017, at the Westin Southfield Detroit, Algonquin Ballroom, 1500 Town Center, Southfield, MI, 48075, from 8:15 AM to 12:00 Noon.
- 8am-9am: Sign-in and Continental Breakfast
- 9am-12pm: Seminar – The Advanced Course of Social Security Disability & SSI – “The things Social Security doesn’t tell you.”
Price: $35.00 per attendee. Visit this site for more information and to register for the event in advance: http://www.sshelpcenter.com/events/.
It is suggested that you have at least attended one of their previous sessions on the basics to gain the most from this upcoming event. Some of the topics to be discussed are returning to work while receiving benefits, in-kind support and maintenance deductions from SSI Benefits, events affecting SSI payments such as living arrangements, work activity, marital status including “significant other” relationships, presumptive disability, trial work periods, unsuccessful work attempts, and moving to another state or out of the country.
Social workers or case managers see Continuing Ed Credits information on registration form. For more information, go to http://www.sshelpcenter.com/events/.
Thanks to the hard work and dedication of Mark & Nancy Hosking and family – Leanne Hosking, Heather Hosking and Kristin & Mark Dalessandro!!!!
MGA appreciates all the time and effort the Hosking family has put in to help raise funds in support of MGA’s goal which is to assist persons diagnosed with MG, their families and/or caretakers. Read more about the event…
The event was held on Friday, June 16, 2017, at the Inn at St. John Golf Course in Plymouth. The weather on golf day was just great. Mostly sunny with some clouds and cool. All 63 golfers had a great time, along with the volunteers. Theme baskets were again raffled, along with our major raffle.
Winners of the major raffle were:
1st Prize (Crystal Mountain golf/ski package) – Kathryn Chrzanowski
2nd Prize (Diamond Pendant donated by Weinstein Jewelers) – Helga Freitag
3rd Prize ($500) – Shawn Shelby
Additional raffle items were: A special Dino Ciccarelli Red Wing jersey, owned and donated by the Hosking family, which was personally autographed by Dino Ciccarelli and beautifully framed, and three Red Wings signed pictures donated by David Harrison.
We thank our members who supported not only the golf raffle, but also had family members golf for the benefit of MGA. Andrea Fuller’s sister and brother-in-law, Robert and Angela Long, brought 16 golfers to enjoy the day and great camaraderie. All the Hoskings golfed with their friends, as well as many of Mark’s business associates. Dick Giba, President of MGA and Jane Horal, MGA Board Vice-President also golfed, along with former Board member, Dale Shomo.
We would also like to thank our major sponsors – PLEASE PATRONIZE OUR SPONSORS:
Crystal Mountain Resort
Weinstein Jewelers of Novi
Miller Vein (Jeffrey H. Miller, MD)
ATM 1000 LLC
Blue Cross Blue Shield
Cranbrook Wealth Management
In addition, thank you to Miguel Perez, Golf Manager, Inn at St. John’s Golf Course and all his staff, including the servers at dinner, MGA Volunteers –Andy and Linda Lukacs, Raelene Tucker, Alex Tucker, Joanne Westenberg and Janet Bartello, and Joanne’s friends, Marge Jenkins and Nancy Williams, who came to volunteer. A special thank you to George Kingston who came all the way from Grand Blanc and Gary D’Alessandro, our Hole-in-One spotters, as well as our “carry-all” helpers.
Initiated this year was a golf auction provided by DC Sports (DetroitCitySports.com) that helped the MGA bottom line with additional proceeds. We thank them for their time and the great products that were brought in.
We deeply missed Fred Brown, our major golf raffle volunteer and best friend to MGA, who passed away in December, 2016. We express our thanks to Helen Brown, his widow, who purchased many raffle tickets, along with family members, to help MGA. Fred was part of the MGA golf event for over 10 years and Helen continues to support our work on behalf of persons struggling with this neuromuscular disease.