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June 30, 2011

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June 30, 2011

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.

The Great!

I've personally experienced the results of this organization in...

Yes

Ways to make it better...

If I had to make changes to this organization, I would...

make no changes currently, just continue to be out there in the public eye

June 30, 2011

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June 30, 2011

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.

The Great!

I've personally experienced the results of this organization in...

seeing patients and families better educated and feeling better!

Ways to make it better...

If I had to make changes to this organization, I would...

Like to see a social worker or nurse practitioner who could travel to physician offices or serve as outreach and education outside the office.

June 29, 2011

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June 29, 2011

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 .

The Great!

I've personally experienced the results of this organization in...

The seminars, meetings presented by MGF of Illionois and the news letter Conquer are very informative and has given me lot of encouragement and understanding of this disease. KEEP UP THE GOOD WORK.

Ways to make it better...

If I had to make changes to this organization, I would...

I could not think of any changes to this organization . This organization can use more support and funding so that it can expedite the research to find the complete cure. MGF of Illinois is an organization that truly helps and supports MG patients and families.

June 29, 2011

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June 29, 2011

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!

The Great!

I've personally experienced the results of this organization in...

Watching my sister thrive as a result of the organization having lead her toward a proper treatment facility.

Ways to make it better...

If I had to make changes to this organization, I would...

Make sure it was abundantly funded.

June 25, 2011

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June 25, 2011

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!

The Great!

I've personally experienced the results of this organization in...

I have the disease and they are a great help to those that have it and don't have it by supplying information on the disease and upcoming discoveries tests etc.

Ways to make it better...

If I had to make changes to this organization, I would...

Provide other organizations names and benefits that assist those with MG that are financially challenged.

June 22, 2011

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June 22, 2011

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!

The Great!

I've personally experienced the results of this organization in...

KEEPS ME INFORMED AND ALLOWS ME TO INCREASE AWARENESS OF MG.

Ways to make it better...

If I had to make changes to this organization, I would...

I CANNOT THINK OF ANY NECESSARY CHANGES AT THIS TIME

June 22, 2011

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June 22, 2011

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.

The Great!

I've personally experienced the results of this organization in...

Providing information on a illness many had not even heard about. I circulated information in the school where i worked and where another teacher was diagnosed.

Ways to make it better...

If I had to make changes to this organization, I would...

I have no suggestions at this time.

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