Multiple Myeloma Research Foundation, Inc.

Rating: 5 stars   17 reviews

Issues: Health, Cancer

Location: 383 Main Avenue 5th Floor Norwalk CT 06851 USA

Mission: The Multiple Myeloma Research Foundation, Inc. is the world''s largest private funder of myeloma research. It''s mission: To accelerate the search for a cure for multiple myeloma. To achieve this purpose, four goals are pursued: Funding research in the field of multiple myeloma, building collaborations among researchers and industry, providing disease and treatment related information to patients and family members while advocating for optimal patient care, and raising awareness of multiple myeloma. The MMRF was started by Karen Andrews after her twin sister Kathy Giusti was diagnosed with MM at age 37. Both sisters were shocked by the lack of awareness and research funding for this incurable cancer and were determined to help find a cure.
Results: By working closely with researchers, clinicians and our partners in the biotech and pharmaceutical industry, we helped bring multiple myeloma patients six new treatments in one decade that are extending lives around the globe. We are now at a turning point where we have the knowledge, the team and the tools to build upon this success and advance the next generation of treatments. We are reaching incredible milestones in advancing our innovative research portfolio of basic science, validation, and clinical trials programs to ensure that better, more effective treatments are brought to patients as soon as possible.
Programs: The mission of the MMRF is to relentlessly pursue innovative means that accelerate the development of next-generation multiple myeloma treatments to extend the lives of patients and lead to a cure. As the world's number-one private funder of multiple myeloma research, the MMRF has raised over $225 million since its inception and directs 90% of total budget to research and related programming.
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EIN 06-1504413
203-229-0464
http://www.themmrf.org
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Rating: 5 stars  

I am so happy to be receiving the regular communications from the Multiple Myeloma Research Foundation and have easy access to its website. Both are full of updates on research across the US and abroad about new treatments and their possibilities. Hearing about Kathy Giusti and her non-stop efforts to get the medical community and the pharmaceutical community to work together is so impressive. I have great respect for her and the way she has established this foundation and its focus on putting the best minds together to find a cure for Multiple Myeloma. The most important aspect of this connection is the hope it offers. After reading the new information, I am always encouraged. I feel this is evidence that all involved are working their hardest and using all of the available resources to help ME. I can't ask for anything more.

Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2013

Was this review helpful? 
Rating: 5 stars  

When I was diagnosed with MM in 2010, my daughter and niece found out about MMRF and immediately signed up to walk in the Chicago area Race for Research which was a week after my surgery. My wife, sister, brother-in-law, and son-in-law also walked on that rainy chilly fall day, but, from that walk, we have discovered what an outstanding organization MMRF is. The information they have provided about MMRF and the progress being made in its treatment has been so helpful as we have navigated our own journey with the illness. And the fact that MMRF has helped not only to fund much of the research but to spur some of that research and the collaborative way in which it is done is truly amazing. To top it all off, they are very resourceful in the way that they manage the funds they have raised so that almost all of it goes into research. We have walked in both the Chicago and Twin Cities races since 2011 and have raised over $22,000 for MMRF. We look forward to joining family and friends each year hoping that a cure will be found soon.

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

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Rating: 5 stars  

As a 15 year survivor of multiple myeloma, I credit the MMRF with speeding new treatments through the approval process so that I have always had other options available to me. I am grateful for the work they do to get researchers and clinicians, as well as patients, to work together to facilitate efficient progress.

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

Increase their international outreach.

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

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Rating: 5 stars  

When my sister was diagnosed with MM in late April 2011, I was grateful to learn of the work of the MMRF and determined to get involved with this organization. In the last two and a half years, I have run 4 marathons as a member of MMRF Power Team, participated in the Empire State Run Up, run 2 Race for Research 5Ks in Atlanta, and attended the 2011 Gala. To say that I am thankful for the work of MMRF is to severely understate my feelings. The advances made possible through MMRF's research and advocacy are why my sister is still with us today. Until there is a cure, I will continue to devote as much energy as I am able to this worthwhile organization.

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

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Rating: 5 stars  

My journey with MMRF began with my diagnosis in 2009. The organization is so well run with such singular focus, the results they achieve are truly life-saving. When I relapsed this year, I knew there were more options available due in part to the tireless work of MMRF. Family & friends look forward to the Race for Research in CA & IL. It's rewarding to raise funds & know exactly where the money is going.

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?

2013

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Rating: 5 stars  

My wife was diagnosed with Multiple Myeloma in in 2008. By July 2012 she had already had one stem cell transplant, gone into remission and then had the myeloma return. All of the available drugs had failed to hold the disease at bay. If it weren't for Carfilzomib becoming available that month, a drug the MMRF helped speed to market she probably wouldn't be with us today, in remission again. Simply put, the MMRF helped save my wife's life.
This amazing organization is fundamentally changing cancer research and drug development as we know it. All of us will benefit one way or another as the rest of the research world adapts to their method of open cooperation between all stake holders, including patients.

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?

2013

Was this review helpful? 
Rating: 5 stars  

MMRF is a remarkable foundation. They have found the magic model. Their mission is simple: cure the disease, and help patients on the way. They are not distracted from their mission by self-sustaining fund raising. They create a remarkable connection between the leading edge of medical discovery and individual patients through a compassionate and caring community, the staff of MMRF. Few in number, they bring the best docs face to face with patients and family, and work closely with pharm companies who want to drop the traditional ways of secretive research, and only work with a community of docs and companies who are willing to share data and results in the quickest manner. That's quite obviously why such rapid medical advances are taking place through MMRF and their approach to a cure. Our family has been touched by too many cancers. I've volunteered and contributed to many cancer causes and foundations. I'd not known of MMRF or the impact of multiple myeloma until my brother-in-law was diagnosed. I've never seen a foundation so efficient in delivering services and information to patients and their families. I've never seen one so diligent and committed to leveraging resources in enabling direct medical studies. And, I've never seen one so focused on the cure, not self-sustainment.

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

Force multiply.

Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2013

Was this review helpful? 
Rating: 5 stars  

I was diagnosed with Multiple Myeloma 5 years ago. The treatments I received, and continue to receive, were all developed through research funded by the MMRF. I feel very strongly that I would not be alive today if it were not for the MMRF. Since Multiple Myeloma is a relatively rare cancer, research into a cure for it does not receive much government funding. Thus, the work done by the MMRF to fund important research is critical. Funds raised by the MMRF are well spent as over 90% of all donations go directly to research, patient education, and support.

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

Triple their funding.

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?

2013

Was this review helpful? 
Rating: 5 stars  

I was diagnosed with Multiple Myeloma in December of 2010 and am in a complete remission. I am amazed at the work that the Multiple Myeloma Research Foundation does. Their work increases the life span of patients diagnosed with this incurable disease. They have funded development of new drugs that patients can take when other drugs have failed to control MM. This charity has changed the course of MM-making it more of a chronic disease and increasing the life expectancy of those suffering from MM. They also hold educational meetings for patients and caregivers. Recently message boards were introduced where patients can come together to support each other. They are striving towards their ultimate goal of finding a cure by sharing data among researchers.
The staff at the MMRF is amazing. I feel that we are a team working together to help raise funds to support this great nonprofit. I have attended small and large gatherings, races and an awards dinner. Though the events are different, the feeling among all the attendees is always the same. Our lives would not be the same without the MMRF. There is not a greater or more productive nonprofit than the MMRF.

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?

A lot

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

Was this review helpful? 
Rating: 5 stars  

I was diagnosed with multiple myeloma in 2011. Multiple myeloma is a blood cancer. Thanks to the MMRF, this cancer is being battled with new drug and treatment therapies that have emerged because of the support of the MMRF. Because the CEO has multiple myeloma herself, she understands the complexities of the illness, its effects on the body, and the urgent need for continued research into new therapies. Those of us with MM want and cure. Based on the work of the MMRF, it is not hard to believe that a cure will be found.

Additionally, everyone I've come into contact with at the MMRF is fantastic! They are supportive, knowledgable, and are intent on finding new therapies and a cure. I can regularly expect emails or calls from the MMRF just checking in on me to see how I am managing my illness and how I am feeling. They recently launched a new Gateway, which brings together those of us with MM from around the world into a forum to exchange information and ideas, as well as to offer support. The Gateway will continue to bring topics of importance to participants and to the MMRF as well. It's an amazing opportunity for clients, caregivers, and researchers alike.

I am involved in the MMRF 5k Race for Research in Boston. I will always support the MMRF through this race and other opportunities, because I know they are leading the way in finding a cure and are using their research dollars prudently, expeditiously, and with focused intention. They are an organization that so clearly understands their priorities and objectives.

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?

2013

Was this review helpful?