My Nonprofit Reviews
Brenda
Review for Arizona Myeloma Network, Glendale, AZ, USA
The Arizona Myeloma Network is a quality organization, locally founded by a very determined, resourceful woman who is passionate about getting help and information to Myeloma patients in my state. I myself am a Myeloma patient and help facilitate a Myeloma support group that she joined (her husband has Myeloma) and can tell you first hand that she gets things done for patients in our state like no one else. Her organization networks with all the other organizations that help Myeloma patients and she made it her job to get to know all the Myeloma specialists in our area. Her organization was instrumental in bring some of the best doctors in the field to speak to our support group and in so doing opened up a whole new level of care and information to patients in Arizona. The next best thing the organization did was start a yearly Myeloma conference that is free of charge and brings in top quality Myeloma experts as speakers. It is one of the best places to get information for the newly diagnosed patients as well as seasoned ones. People come from all over the state and it fills a very important function of providing a truly quality program close to home. This is a wonderful service, especially for those who aren’t well enough to travel great distances for help and information. This organization has been life enhancing on many levels for Myeloma patients. Thank you AZMN!
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I've personally experienced the results of this organization in...
access to information, introduction to doctors that are Myeloma experts and emotional support
If I had to make changes to this organization, I would...
give them more grants so they could provide more programs
Review for International Myeloma Foundation, North Hollywood, CA, USA
Finding the IMF when I was diagnosed with Multiple Myeloma in 1998 was one of the luckiest days of my life. I didn’t know it at the time but they were a pretty new organization. It was a rare disease and they had the best information and guidance available then and now. They gave me free information that guided me through how to get a complete diagnosis and how and where to find the most up to date and appropriate treatments available to me. I feel their dedication and kindness to Myeloma patients continues to be a huge factor in my healing and is one of the biggest reasons I am still in complete remission 12 years after treatment. They offer patient seminars all over the US every year where they bring Myeloma specialist to your area and keep you up to date on the newest treatments as well as give invaluable information to the newly diagnosed. When attending one of these meetings you meet other patients and some of the best doctors in this field. When I was looking for more local support in the state I live in they put me in contact with other Myeloma patients in my area and we formed with their guidance a support group that has grown from the original 15 patients to over 80. This is only one of the things they do best; but it made a significant change in the information and help available to patients in all areas of my state. They continue to grow and offer new help to patients every year. Two of the newer things most important to me have been the free help line that they staff with experienced and knowledgeable people and the “Myeloma Manager”, a free computer program that helps patients keep track of their testing results and makes wonderful charts for them to take to their doctors. These charts are the best things available to help doctors not familiar with your history and see your information quickly and efficiently. Most doctors are time constrained and this information is invaluable when getting a second opinion. Thank you IMF!
More Feedback
I've personally experienced the results of this organization in...
information gathering, treatment options, support and guidance.
If I had to make changes to this organization, I would...
Can't think of a thing.
