SOSIN EDUCATION SYMPOSIUM – OCTOBER 21, 2018

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.

Chuck and Caroline Caulk

 
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.

Myasthenia Gravis and Influenza Vaccine

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.

2018 Sosin Education Symposium

Date: October 21, 2018
Time: 12:00pm
Location: Inn at St. John’s
Plymouth, MI

The Guest Speaker for the Sosin Education Symposium is Dr. Kavita Grover, MD.  The event will be held on Sunday, October 21, 2018, at Noon at the Inn of St. John’s, Plymouth, MI.

There will be a served lunch.

Headshot of Dr. Kavita Grover

Photo Credit: Henry Ford Health System

Dr. Kavita Grover is a senior staff neurologist in the Department of Neurology at Henry Ford Hospital and an Assistant Professor, Wayne State University. She is the program director of the clinical neurophysiology fellowship. She completed her medical training at the Government Medical College & Hospital, Chandigarh, India and a post graduate neurology residency at Henry Ford Hospital in Detroit, Michigan. She then completed a one-year EMG track clinical neurophysiology fellowship at Henry Ford Hospital in Detroit, Michigan. After her training, she joined as a neuromuscular faculty in the same department.

Dr. Grover is board certified by the American Board of Psychiatry and Neurology (ABPN), in Neurology with added qualifications in clinical neurophysiology, neuromuscular medicine and by the American Board of Electrodiagnostic medicine. She is currently a fellow in the American Academy of Neurology. She has served on the In-service Examination Committee, Graduate Medical Education Committee of the American Association of Neuromuscular and Electrodiagnostic Medicine (AANEM).  Her research interests include treatment options for Myasthenia Gravis (MG), pregnancy outcomes in patients with MG and refractory MG.

It is our understanding that Dr. Grover is replacing Dr. Stanton Elias who retired on June 30, 2018.

The Sosin Education Symposium is so named in honor of Jean and Hilbert Sosin.  Both Jean and Hilbert helped to establish the Myasthenia Gravis Association (MGA) over 50 years ago. The Sosin Family continues to assist MGA through sponsorship of this event. MGA is very grateful for this support.

Please mark your calendars for Sunday, October 21, 2018, to meet Dr. Grover and ask any MG questions you might have. Formal invitations will be mailed in early September. For more information or to make a phone reservation, please call the MGA Office at 248-591-4419.  Visa and Mastercard accepted.

We look forward to seeing you there!!

Dick Giba, Dale Shomo & Jane Horal at the Sosin Symposium last year

Dick Giba, Dale Shomo & Jane Horal at the Sosin Symposium last year.

Click map below for directions to the Inn at St. John’s:

2017 MGA Holiday Party

The 2017 MGA Holiday Party was held on Sunday, November 12, 2017, at the American Polish Cultural Center in Troy, MI.  This was a new venue for 2017, but everyone enjoyed a great meal and the children had a great time with the activities provided and gifts received from Santa’s Elves!  A beautiful poinsettia plant from Eckert’s Greenhouse and MGA glassware were raffled off at each table.  Entertainment was provided by “Elvis” Kelly and “Oldies” Kelly.


 

So many wonderful volunteers this year — Heather Hosking was our Master of Ceremonies and did a great job in keeping the party on schedule.  Santa’s Elves were Nancy Williams and her daughter, Kristin, and I think they had as much fun being there as the children.  Karen Hanna and Stan Lisica assisted the MGA staff with registration and decorations to make this holiday event beautiful, as well as help from Nancy and Kristin Williams.  Stan Lisica did wonderful work selling 50/50 raffle tickets, which amount was bolstered by a contribution back from the winner of the raffle, Andy Lukacs.  Thank you, Andy!

Please plan to join us next year!!

FDA Approves Soliris for Generalized MG

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.

Muscular Dystrophy Association LogoWe 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.

Sincerely,
MDA Outreach

At the present time, Soliris is very expensive.

Soliris logo

 

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.

SOSIN EDUCATION SYMPOSIUM Held October 22, 2017

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!

Lama Woweidan and family

 
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.

MGA Holiday Party

Join us for our annual holiday party.

Sunday, November 12, 2017 at 12pm.elvis dancing graphic

We promise you a good time, good food, great entertainment and gifts for the children and grandchildren.

There will also be live entertainment by Elvis and other legends!

Download Printable Registration Form

The party will be held at a new location this year:

The American Polish Cultural Center
2975 E. Maple Road, Troy, MI 48083

 

The Advanced Course of Social Security Disability & SSI

Social Security Counseling Center Logo

 

 

 

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.

Itinerary:

  • 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/.

 

The 24th Annual MGA Golf Classic Was a Great Success!

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
Carl’s Golfland
Cornerstone Benefits
Cornerstone Group
Cranbrook Wealth Management
Government Cheese
Absopure Water

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.