Dear Michigan MG Community:
As some of you may be aware, the national parent organization, “Myasthenia Gravis Foundation of America, Inc.” has decided this year to do away with its long-standing Chapter structure and to primarily direct all activities from its headquarters in New York. We learned of these plans earlier this year and waited to hear if it would actually be ratified at the national conference this past April in San Diego. The plan was approved at that conference and we again waited to find out what our future might be under this new format. We were visited by representatives from the National Board and told that we had three options:
1) Dissolve our chapter and remain as an affiliated community group becoming basically “volunteers on call” for holding periodic support meetings, awareness, or fundraising events organized by and for the benefit of the National.
2) Disband our chapter and we would be required, by year-end 2015, to liquidate our assets and remit them to National, let our part-time director, Sue Southerton, go and close up our office here in West Michigan.
Or
3) Reorganize ourselves as an independent entity with our own 501(c)3 status (which allows us to fundraise as a tax-exempt charity). We would not be affiliated with or receive any direct support from National such as event insurance or printed materials for free and we would no longer have to pay a monetary assessment to them as we have in the past.
I am happy and proud to inform you that your board has decided on option 3 and to that end, we have now reformed our entity structure and assumed our new name the “Myasthenia Gravis Foundation of Michigan.”
We strongly feel that this choice is the very best way to care for our MG patients, support their caregivers and inform the citizens of Michigan about this debilitating and rare disease.
You should also know that we have applied for 501(c)3 status and we are awaiting those documents shortly. We have drafted new by-laws and we will hold an election of officers at our first official meeting in January 2016.
Fortunately, your board members have chosen to remain together so that we can carry on our work of keeping the phone line and website available, offering meetings, events, raising awareness and providing informational support.
At this time, I would like to thank the entire board for their input, guidance and support through this difficult and uncertain time. I would especially like to thank Esther Land and Sue Southerton for their unwavering energy in carrying on our operations by manning the office, communicating with patients and providers and organizing our events and meetings.
I would also like to thank our Treasurer, Priscilla Walden, for her many hours managing our accounting and generating countless forms and reports, so that we could make this reorganization happen. At the same time she continued to hold small events to raise money for our organization.
Also, last but certainly not least, our gratitude and admiration to Jim Burr, a gentleman who has served us so well, for so many years as a board member, legal advisor and great friend. He has successfully counseled us
through many regulatory policies and legal issues.
So, now that we stand on our own, we need all of you more than ever as together we keep the operations viable, communications flowing, the support meetings happening, and making our communities throughout Michigan aware of MG. We hope to reach out to all of you by year end with an annual appeal for your financial help in funding your newly reformed organization. God bless all of you and keep you strong through your journey with MG.
Sincerely,
Howard Hansen
President, Myasthenia Gravis Foundation of Michigan
