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!

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.

MGA 24th Annual Golf Classic Info & Registration

When: Friday, June 16, 2017golfer clip art
Time: Registration 8:00 am
Scramble 9:00 am

Where: THE INN AT ST. JOHN’S GOLF COURSE “New Venue”
44045 Five Mile Road
Plymouth, Ml 48170
Phone: (734) 414-0600
Website: theinnatstjohns.com


DONATE TO THIS EVENT

 

If you would like to register more than 3 Foursomes please use printable form or contact us directly. Thank you!

Contact Us:

Phone: 248-591-4419
Toll Free:  800-227-1763
Fax: 248-591-4423
E-mail: mgadetroit1@yahoo.com

Woman golfer clip art

Please note the Early Bird Special for Foursomes will only be available until June 2, 2017 as well as the sponsorship opportunities for this event. If you can’t participate but would like to help sponsor this event fill out form here.

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1 Step 1
MGA 24th Annual Golf Classic Online Registration & Payment

Online registration closes on Wednesday, June 14th at 12:00am.
We will still be accepting registration by phone  at (248) 591 - 4419 and registration at the event will also be accepted.

Registration Options
First Foursome:
Team Captain
Team Captain Nameand/or primary registration contact
Company
Address
City/State/Zip
Phone(xxx) xxx-xxxx
Player 1
Name - Primary Contactfull name
Namefull name
Company
Address
Address
City/State/Zip
City/State/Zip
Phone(xxx) xxx-xxxx
Phone(xxx) xxx-xxxx
Player 2
Namefull name
Company
Address
City/State/Zip
Phone(xxx) xxx-xxxx
Player 3
Namefull name
Company
Address
City/State/Zip
Phone(xxx) xxx-xxxx
Second Foursome:
Team Captain 2
Team Captain Nameand/or primary registration contact
Company
Address
City/State/Zip
Phone(xxx) xxx-xxxx
Player 1
Namefull name
Company
Address
City/State/Zip
Phone(xxx) xxx-xxxx
Player 2
Namefull name
Company
Address
City/State/Zip
Phone(xxx) xxx-xxxx
Player 3
Namefull name
Company
Address
City/State/Zip
Phone(xxx) xxx-xxxx
Third Foursome:
Team Captain 3
Team Captain Nameand/or primary registration contact
Company
Address
City/State/Zip
Phone(xxx) xxx-xxxx
Player 1
Namefull name
Company
Address
City/State/Zip
Phone(xxx) xxx-xxxx
Player 2
Namefull name
Company
Address
City/State/Zip
Phone(xxx) xxx-xxxx
Player 3
Namefull name
Namefull name
Company
Address
City/State/Zip
Phone(xxx) xxx-xxxx

Payment options: Mastercard, Visa, Discover, American Express and PayPal. A PAYPAL ACCOUNT IS NOT NECESSARY TO PAY. Look under the PayPal members login for a link to pay with a Credit Card. All payments are made through PayPal's secure payment portal.

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Item(s)[field38][field38*field42]

Please don't hesitate to call our office if you have any questions and/or issues with the online registration form. 


Phone: (248) 591-4419

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MGA Holiday Party 2016

 MYASTHENIA GRAVIS ASSOCIATION
2016 HOLIDAY PARTY

SUNDAY, NOVEMBER 13, 2016 12:30 P.M.
SAN MARINO CLUB (see map below)
COST: Adult – $22.00
Child – $12.00 (ages 6-12)
(Age 5 and under – Free)

Clip art of Christmas Tree

We Promise you a good time, good food, great entertainment & gifts for the children & grandchildren. 

Download and Print the MGA Holiday Party reservation form here.
Please return by: November 9, 2016 

DONATE TO THIS EVENT

Contact us for more information:
Call: (248) 591-4419
Email: mgadteroit2@yahoo.com.

Location:
San Marino Club
1685 E. Big Beaver
Troy, MI 48083

2016 Golf Classic Raffle Winners

The MGA 23rd Annual Golf Classic and Raffle was held Friday, June 24 at The Orchards Golf Club in Washington Township, Michigan.

First Prize of $1000 went to Jake Veresh. Ticket seller was Heather Hosking. Jake is new to Michigan and said, “I never win anything.” Congratulations, Jake. Come back next year and try for a second win.

Second Prize of Golf for Four and overnight accommodations at Bay Harbor Golf Club in Petoskey, Michigan went to Ed Lynch of Rochester. Ticket seller was Mark Hosking. Congratulations, Ed.

Third Prize of $500 went to MGA’s longtime member, Jeanette Williams of Detroit. Jeanette couldn’t believe that she won! She also gave a donation to MGA from her winnings. Ticket was sold in the MGA office. Thank you, and congratulations Jeanette.

Golf Chairman, Mark Hosking and his team

Golf Chairman, Mark Hosking (far left) with his team, David Bernard, Sal Saputo and Tom Murar.