Zilucoplan Clinical Trial Updates

Ra Pharmaceuticals is preparing to launch a Phase 3 clinical trial to assess the therapeutic potential of zilucoplan for the treatment of patients with generalized myasthenia gravis (gMG). This comes after the company’s completion of End-of-Phase 2 interactions with the FDA

Third Annual Meeting and Conference Sunday, September 23, 2018

Fundraising for the third Annual Meeting and Conference

September 23, 2018

We are having the “Bucket Raffle” again. If you are not familiar with a Bucket Raffle, it is similar to a silent auction only instead of bidding on items you purchase raffle tickets and place the tickets in the bucket of the item that you want to win. There will be one winning ticket drawn per bucket. Place tickets in as many buckets as you would like. The more tickets that you place in any bucket, the greater your chances are to win the item.

 The costs of the tickets are:

No. of Tickets                        Cost of Tickets

5                                              $                5.00

12                                           $              10.00

25                                           $              20.00

 

Tickets will be available for purchase at the conference. No limit on the number of tickets you can purchase.

 

We still need raffle items…

If you would like an idea or have an item, call Shirley Kramer at 612-240-3100.

 

 Brunch Menu:

We are having a build your own sandwich buffet. It includes assorted breads, turkey, ham, roast beef, three cheeses, lettuce, tomato, potato chips, pickles, pasta salad, and a fruit plate.

 

 

We encourage you to invite your family and friends to the conference. It is a chance for them to learn about Myasthenia Gravis and help raise funds for MG.

 

DOOR PRIZES

There will be door prizes throughout the conference, including a door prize for whoever brings the most guests with them. 

 

Keynote Speaker

Dr. Kiesling will be speaking on the new medication, Soliris from her perspective as a patient. She is a member of the Brainerd MN MG support group.

 

We hope to see you at the conference!

 

Second Annual Meeting and State Conference

Such a Grand Day!

Highlights from mgMN’s Second Annual Meeting and State Conference

Another year to celebrate!  mgMN’s Second Annual Meeting and State Conference was held on Sunday, September 24, 2017 at the Best Western Hotel and Conference Center in Shoreview, MN.  Several people were heard to remark, “This is the best conference ever.” Registration began at 9:00 am, as pastries and coffee were served.  mgMN Board Chair, Diane Tower bid a cheery good morning to everyone and opened the business meeting.  Formal minutes as well as the financial report were presented, amended and approved.  People were directed to look at the formal committee reports as well as reports from the support groups in their conference packets.  The business meeting was adjourned.  

A special time was spent honoring Lianne Anderson, a long-time member with MG, board member and support group leader for her outstanding service and superior leadership over the years.  In a small ceremony led by Barb Corner, Lianne was awarded a beautiful, inscribed table clock in recognition of her contributions.  Lianne was unable to attend this year’s conference due to illness, so a video was made of the ceremony.  It will be given to her along with the clock, and our thanks and appreciation of her dedication at a later time.

Our first speaker, Karen Peterson, the Executive Director of Honoring Choices Minnesota was remarkable.  Her organization reaches out to groups and individuals interested in learning about health care choices and health care directives.  Every conference participant received a blank copy of a health care directive.  In a very clear, practical and compassionate manner Karen explained the reason and purpose of every section and question.  She spent a lot of time discussing with the group the importance of choosing their health care agent wisely.  Karen emphasized how critical this was to insuring that the choices you desired would be carried out. Another thought Karen shared was that when thinking about what direction you would like to take, think about a general path and use that as a guideline.  This organization is an excellent resource. (Insert Pop-Up Door Prizes!)

 A new brunch (or should we say lunch) menu was served this year - a sandwich bar! Yummy! (Insert Pop-Up Door Prizes!) 

Teri Kiresuk, DNP was our afternoon speaker.  Teri is an associate professor, a doctorate level nurse practioner, works for LIVIO Health Group an on-site health care partner providing medical assessments and services in the home, as well as a mom of a young woman with refractory MG.  Teri talked about MG and it’s relationship to other autoimmune disorders in general. Her comprehensive presentation covered technical aspects of MG as well as the day-to-day realities and challenges of living with the condition.  When one uses the word fatigue when describing the symptoms of MG, Teri explored the question - what does fatigue really mean? What does it look like?  What is it’s impact? Teri has a unique and compassionate way of blending her technical knowledge with her nursing perspective to present a holistic picture of MG.

Auction Time!  This year it was accompanied by coffee and chocolate chip cookies!  Ooh la la!  We had great auction items.  Ticket sales were up! There were wonderful baskets; a beautiful coffee basket, a Kowalski’s Fruit and Gift Certificate basket, The Bee’s Knees Honey basket, some $50 gift certificate bags, a lottery ticket basket, a mystery money envelope, even an Irish Soiree event to attend.  Dave Schlief once again performed the honors, ably assisted by Shirley Kramer.  An entertaining pair. This year’s winners seemed to fall into a unique pattern as they sat throughout the room, what are the odds of that? So much fun to watch.  (Insert Pop-Up Door Prizes!) Thanks everyone for the great time.  See you next year.  We’ll have even more fun!

Shirley Kramer