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!
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!!:)
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.
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!
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.
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.
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.
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.
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.
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.
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.
I was diagnosed 16 years ago when the IMF was the only organization focused on making myeloma understanble for patients. Compared to today, the information format they provided was ancient, just as the internet was. But it was invaluable to me.
And today by providing MM expert video interviews, a technical helpline, webinars, and so many well-written documents, the patient/caregiver who wants to learn more about MM can find everything in every format from the IMF.
My dad was diagnosed in 2000 with multiple myeloma. He was only 36. I was seven and my brother was two. Since the beginning the people at the IMF were there for us with information, care and help. They feel like family to me. Their hard work and compassion makes a difference in so many people's lives. The IMF is a unique non-profit, organization in that they are not faceless organization, but people that truly care about patients and their families. They know who you are and want to help. But it goes much farther than that; the IMF's programs, publications, research, Patient & Family seminars, Regional Community Workshops, advocacy, hotline, support groups, internet, webcasts, myeloma matrix, International Myeloma Working Group; the list goes on and on! Each of these has helped my dad and patients worldwide do better!
In the summer of 2002 my brother and I wanted to help my dad and the IMF so without my parents knowing, we set up a lemonade stand in front of our house. We did not make a ton of money, but the IMF treated us like we did and were very thankful.
This year for my high school senior project, I wanted to raise awareness and funds for the IMF. I created a Glee Club for my school and we gave a performance to benefit the IMF. We raised over $5,000!
What better way to help others than through the IMF! They are absolutely "THE BEST" . . . a 5 Star Plus rating non-profit in my book.
It has been my honor to act as a member of the Board of Directors of the International Myeloma Foundation for most of the past 20 years.
In that time, it has evolved from a small, underfunded organization to become a primary source of current information and knowledge about myeloma and its management for tens of thousands of myeloma patients and clinicians all around the world -- from New York and Los Angeles to Beijing and Aukland.