This small nonprofit group has helped me to cope everyday with my illness for the past 25 years. When I had never heard of the disease they helped me understand what it was, what I needed to do to get better and how to deal with my illness in everyday life. They are always there for me when I need them either on the phone, with a support group meeting or spring and fall meeting programs on different aspects of this illness, question/answer sessions with neurologists, prescription guidance, diet and nutrition, exercise etc.
The MG Foundation of Il has been a godsend for me. They have helped me so much in my recovery and dealing with this illness. The support groups are great. It is just not a gripe session about your illness but help f rom other people dealing with MG and how they cope and make life easier for them, programs and discussions. The organization has 2 annual meetings a year and they have wonderful speakers with great question and answer sessions. I have been with this organization for 22 years and I am constantly learning and meeting great people that inspire me. The Executive Director is willing to help you as much as she can on the phone and give you referrals. I would give this foundation a 5 star rating and encourage anyone who gets MG to become a member, go to support groups, annual meetings and help support financially the cure for MG.
This is a wonderful organization helping those with this rare disease. From patient support to community education, programs and fundraising, they do so much. Joan who runs it is fabulous and goes above and beyond to make sure needs are met. It has meant a lot to me to feel part of a group of people who can relate and care.
I am a leader/convener of one MG of Illinois' support groups. We have received much help from the Foundation office, and always promptly. Joan has made the long trip on a Sunday afternoon to attend one of our meetings and encourage the support that is being given, as well as providing available literature. Also, different members of our group have personally received help from the Foundation office. Some of our new people were directed to our group by their office. We couldn't ask for more.
My sister had a thymectomy a few years ago-and thanks to the support of the myasthenia gravis foundation, she is living an educated, healthy and progressive life ( which includes a five-month-old baby girl, born after an awesome, healthy pregnancy!)
I was not even aware of how serious this disease is until I learned that my niece was suffering from it. As a result, and through the efforts of my brother (who became an active volunteer and donation solicitor), I learned more about not only the disease itself, but how much the Foundation provided help and encouragement to those having the disease as well as the patient's family and friends. My niece is now in remission (thank God), but my family continues to support the MGF of Illinois. Keep up the good work!
The board of MGF of Illinois began a new program this calendar year as part of its effort to explore new ways of assisting myasthenia patients. The Patient Assistance Program was created to provide financial help to MG patients struggling to pay those medical and medication expenses not covered by health insurance. So far this year MGF of Illinois has been pleased to be able to assist six applicants with these expenses. We encourage those seeking such help to visit our website for a detailed description of the program and an application.
This is the best source of information, I will always be grateful for the Treatment and Diagnosis from Dr Julie Rowan, for those who struggle with this ... please use the resources out there and know you will have a normal wonderful life. Speak up and talk with your doctor and do not be afraid to spread the word.
I have seen the MGF of Illinois help hundreds of patients and their families. I have attended support group meetings where patients are relieved that others know they are not making things up - their frustrations are real. I wish we could do more - MG poses significant challenges to continuing "normal" life and work. Many do fine but some have greater challenges. I would like to see better treatment options, earlier diagnosis and better education of our physicians.
I have ocular MG. I am one of the few lucky one who was quickly and timely diagnosed by Neuro ophthalmologist Dr. Jeffrey Haag, Wheaton Eye clinic and confirmed by leading Neurologist in the field of MG Dr. Mathew Meriggioli, Director of Neuromuscular Division, Uni of Illinois Chicago . Dr. Meriggioli was kind enough to give me an appointment very next day after I spoke to him, in spite of his busy schedule, and started the treatment immediately. My MG disease is under control. My family and I are grateful to Dr. Meriggioli .
My sister, Alison, has MG. After receiving improper (and often dismissive) treatment from a local neurologist, she was guided by this organization to Dr. Julie Rowan at the University of Chicago.
Dr. Rowan was wholly responsive. She informed Alison of treatment options and helped her manage the day-to-day challenges...physical, psychological...associated with this condition. My sister opted for a surgical route and had her Thymus gland removed. Alison's symptoms have since abated. She is being weaned from her prescribed steroids and is feeling very well.
Julie Rowan is a gifted doctor without whom Alison's life would be very different. Our family thanks the Myasthenia Gravis Foundation of Illinois for its education, support and medical network. God bless you!
I have Myasthenia Gravis so when I heard about the business nearby selling flowers to benefit the foundation, I immediately went there to buy some for my mother.
The business owner, once learning that I was purchasing flowers to help MG and that I have MG, donated not only my purchase but the purchase of his best sale that day!
Thank God for these types of benefits to earn money for the MG Foundation of Illinois in order to research and someday provide a cure for this awful disease!
i WAS DIAGNOSED WITH MG AT 18 AND NOONE KNEW ANYTHING ABOUT THE DISEASE. THE MG FOUNDATION WAS INSTRUMENTAL IN PROVIDING INFORMATION FOR MYSELF, MY FAMILY, AND LOCAL DOCTORS. THEY ALSO PROVIDED A MEANS TO BE IN CONTACT WITH OTHER MYASTHENICS FOR SUPPORT AND ENCOURAGEMENT. THE ANNUAL MEETINGS AND SUPPORT GROUPS ARE A WAY TO STAY CURRENT IN RESEARCH AND TRENDS. IT IS ALSO A WAY TO PROVIDE SUPPORT TO OTHERS. GREAT JOB!
When i was first diagnosed, it was helpful to get all of the information that they had availaable. I also went to the support sessions for a few years. One of the best things they did was to send patient information packets to 2 people who had been diagnosed and had come to me for information. The people were very greatful for the information provided.