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15 Reviews
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November 7, 2013

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1 previous review
June 25, 2011

I was diagnosed with Multiple Myeloma in 2001- I found the IMF in 2002- they have been a great source of MM information. I have them to thank when it comes to starting our MO/IL MMSupport Group. They ... more

November 7, 2013

I can not say enough about Dr. Durie, Susie Novis or the IMF staff! They are what they are - caring , honest, educated & loving folks who dedicate their lives to helping myeloma patients & caregivers!
They eat, breath & sleep myeloma! They donate their time & energy to bringing the myeloma
community hope,education & maybe the cure one day soon!!!!
I am a Myeloma patient & volunteer support group leader. I consider them part of my health team!!
We are truly thankful there is an IMF & for the people who founded it & make it what it is today!

Ways to make it better...

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

Unlimited finances to continue there work without limitations!!

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

June 25, 2011

I was diagnosed with Multiple Myeloma in 2001- I found the IMF in 2002- they have been a great source of MM information. I have them to thank when it comes to starting our MO/IL MMSupport Group. They have come to our area with workshops helping area mm patients & caregivers.
I have attended
some of their leadership conferences as well as a patient & family seminars. The staff is easy to reach and are always there to help. It is like a family of caregivers- they are special people doing alot for us myeloma patients.
Even tho they are based in CA. They have been by my side since 2002.
Just wish I lived closer to them!!:)

The Great!

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

The IMF helped me start our area support group, helped me learn to run it with their Leadership Conferences that I attended. Once we were on our way- the IMF brought educational workshops to our area to help patients. This was all done for the patients at NO cost! They have been a blessing to the Myeloma community. Thanks needs to go to them for educationg the patients & families dealing with Myeloma, as well as all the searching they are doing to find a cure for us!

Ways to make it better...

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

I wish they had an area office closer to us in the midwest.

November 30, 2012

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November 30, 2012

Diagnosed with multiple myeloma in 2006, I searched all over to find information about the disease. The International Myeloma Foundation (IMF) sent me a free package of their publications. They were extremely informative and helpful. As the IMF says, "Knowledge is Power", and they do wonderful things to help educate patients and caregivers. Their Hotline is a Godsend for patients and caregivers seeking expert information and advice. I attended several of their wonderful Patient and Family Seminars, where myeloma expert physicians give excellent talks and answer any and all questions individuals have. The IMF also helped me to start a Multiple Myeloma Support Group, providing funding for startup efforts, and offering great advice, visiting speakers, and a regional support group coordinator to answer any and all questions I had. In addition, they have an annual Support Group Leader Summit, a weekend of valuable education and shared discussion with leaders nationwide and myeloma experts. They also educate medical professionals, fund critical and productive research to help find a cure, coordinate international medical efforts through the International Myeloma Working Group, and run a Nurse Leadership Board that creates excellent publications on supportive care for myeloma patients. And much, much more. Bottom line: the IMF is the bright star lighting the way for folks impacted by multiple myeloma.

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

June 30, 2011

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June 30, 2011

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!

The Great!

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

information gathering, treatment options, support and guidance.

Ways to make it better...

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

Can't think of a thing.

June 29, 2011

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June 29, 2011

I was diagnosed almost 9 years ago, and over 5 years ago started a Multiple Myeloma Support group. During that time the IMF has been a wonderful source of information about MM and treatments/drugs and clinical trials available.

This has been very valuable in understanding my own
treatment options and providing information and contacts to others with Multiple Myeloma.

I'm happy to see local events Like the Patient and Family Seminar being held in Minnesota, and I'd love to see an opportunity for that type of information event in Rochester MN.

The ability to contact someone personally is extreamly valuable to those that have been newly diagnosed or are considering new treatment, Thank You for providing that.

Photos

The Great!

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

Information / Brochures on treatments and Desease overview Seminars that explain many related topics to dealing with MM and quality of life .

Ways to make it better...

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

Provide more local connections to support groups Provide local seminars to areas with Cancer Centers and a high number of MM patients

More feedback...

How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Likely

How do you feel you were treated by this organization?

Quite well

How did you find this group?

via others involved in Multiple Myeloma and via web search

What, if any, change in your life has this group encouraged?

Help in supporting and reaching out to others!!

When was your last experience with this nonprofit?

2011

June 28, 2011

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June 28, 2011

On several occasions, I was at a point in my treatment where I didn't know what decision to make. In each case, I called the IMF and spoke to a hotline advisor/counselor who helped me make a decision that was right for me. They were able to give me information about doctors in the city I had just moved to, to guide me to a local support group, and to provide encouragement and empathy as well. I really feel the IMF offers a unique service through their patient hotline, their many family patient seminars, as well as many other ways of providing education and support for people experiencing this difficult and little understood cancer.

The Great!

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

my life

Ways to make it better...

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

don't have any specific ideas for changes I would make

June 28, 2011

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June 28, 2011

Carole L. I was diagnosed December of 1987, 24 years ago. The first 4-5 years after diagnosis were a time of feeling very alone as Multiple Myeloma was not a well know cancer. I could not reach out to anyone that knew what I was going through. With the help of my Doctor and self educating I gathered what I could. Then with the help of computers I found the IMF and it opened a whole new world for me. I was able to chat on line with others, get updated on treatments, and finally go to a MM patient seminar. The IMF to me is and will always be a sustaining hope for everyone with Multiple Myeloma. The IMF never gives up and they have been instrumental in moving science forward. Hats off to Dr. Durie and Susie.

The Great!

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

The IMF is always there to answer questions, keep you updated, and mostly to always give hope. What is unique is this is always done on such a personal level like you are family. Susie personally talked with my daughter to console her. What organization does that.

Ways to make it better...

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

Not change a thing as they are one of the few organizations that constantly strives to improve and to keep moving forward with what they can provide and offer you.

June 27, 2011

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June 27, 2011

My husband was diagnosed in June, 08. The information that I have received from the site and from phone calls to them, has helped me talk to his doctor, and know what to ask. How to understand his test results, etc. He is 78 and out mowing grass right now.

The Great!

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

Good experience from this group.

Ways to make it better...

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

Get more funding from the Govt.

June 27, 2011

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June 27, 2011

When I was diagnosed with multiple myeloma in 1998, I quickly found out I had a lot to learn. A friend dragged me to a support group sponsored by the IMF. I learned much more useful information from my fellow patients than I did from my doctors and nurses. The patient-oriented brochures published by the IMF were good references that helped me learn a new vocabulary for dealing with my disease. Over the years when I have run into a problem for which nobody seemed to have the answer, I have turned to the IMF Hotline. If they didn't have an answer, they would refer the question to members of the Scientific Advisory Board and get back to me.

The Great!

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

I give the IMF credit for helping me be a 13 year survivor of multiple myeloma which had a 2-3 year average survival when I was diagnosed.

Ways to make it better...

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

Conduct more workshops in different parts of the country that are under-served.

June 25, 2011

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June 25, 2011

Barnum and Bailey were known for their exciting 3-ring circus under one big tent - a circus that travelled the nation, lifting everyone's spirits. Novis and Durie have pulled together an even more exciting 3-ring forum under one big tent: the International Myeloma Foundation (IMF). Multiple Myeloma experts, patients and caregivers meet and communicate under this invaluable tent, sharing important information and supporting critical research to find a cure for the disease. Susie Novis, Founder and President of the IMF, and Dr. Brian Durie, myeloma expert and Chairman of the Board, created this wonderful organization focused on helping multiple myeloma patients and families. Their Patient & Family Seminars and other educational events have educated me, my family and thousands of others, supporting their theme that Knowledge is Power. Their funding and fostering of international coordination on critical research has helped to accelerate the availability of new and effective treatments, enroute to what will hopefully one day be an ultimate cure. In addition, they provide guidance and assistance to over 150 worldwide myeloma support groups, enabling patients and families to learn more about the disease and to share information and provide mutual support. The topnotch IMF is 5-Star, across the board.

The Great!

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

I've personally experienced the results of this organization in many ways. I've become much more knowledgable about myeloma through their publications, hotline and educational seminars; learned from many experts at such events, and benefitted immensely from interaction with other patients and caregivers through support group functions.

Ways to make it better...

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

No changes warranted, other than finding a way to double or triple their annual budget to support more of their wonderful efforts.

June 24, 2011

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June 24, 2011

My husband was diagnosed with Multiple Myeloma in 2009, at the age of 66. We knew nothing about the disease, but through research online found the IMRF and the amazing amount of information available not just from the medical and scientific community, for which we were hungry, but by which we were often confused; but most helpfully, patient chat boards and archives full of helpful suggestions and encouragement. Now there are updates, caregiver blogs, patient, nurse and physician blogs, all full of hopeful information for those of us living and loving those with MM. My husband has a great attitude. He had a successful SCT in 2010, and is in remission. A bout of double pneumonia a year later turned into kidney failure. His kidneys are back to 10% function. Thanks to the patients input, I know this isn't unusual.

The Great!

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

Reading about and hearing from long term survivors. It has been like drinking water after a desert journey to hear of new effective ways of treating MM.

Ways to make it better...

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

Encourage more local fund-raisers and Ira roll over type contributions from the rich and arrange a knighthood for our Jeopardy champ.

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