multiple myeloma research foundation patient portal

What is the Multiple Myeloma Research Foundation?

The Multiple Myeloma Research Foundation (MMRF) drives discoveries for new treatments, accelerates groundbreaking clinical trials and fuels the most robust data-driven initiatives in cancer research. Our goal is to find a cure for each and every patient diagnosed with multiple myeloma.

How can a multiple myeloma nurse support you?

Here, she supports myeloma patients in a variety of ways from triaging calls, to educating patients on their myeloma, labs and test results, and coordinating with research and management to implement integral changed and streamline processes for access to new treatments.

What is the first myeloma platform trial?

Karen has worked with the consortium sites and pharma companies to launch nearly 100 multi-center clinical trials including the first-ever myeloma platform trial, MyDRUG.

How can you help accelerate a cure for multiple myeloma?

You can help accelerate a cure for each and every myeloma patient. Click to explore ways that you can donate. The Multiple Myeloma Research Foundation (MMRF) drives discoveries for new treatments, accelerates groundbreaking clinical trials and fuels the most robust data-driven initiatives in cancer research.

What is the life expectancy of multiple myeloma patients?

Multiple myeloma is an uncommon cancer of the blood. The median length of survival after diagnosis with multiple myeloma is 62 months for Stage I, 44 months for Stage II, and 29 months for Stage III. Life expectancy depends on many factors, including the person's age, health, kidney function, and more.

Is there a multiple myeloma Foundation?

The Multiple Myeloma Research Foundation (MMRF) drives discoveries for new treatments, accelerates groundbreaking clinical trials and fuels the most robust data-driven initiatives in cancer research. Our goal is to find a cure for each and every patient diagnosed with multiple myeloma.

Can you survive multiple myeloma?

The overall 5-year survival rate for people with multiple myeloma in the United States is 55%. For the 4% of people who are diagnosed at an early stage, the 5-year survival rate is over 77%. If the cancer has spread to a distant part of the body, the 5-year survival rate is over 54%.

How serious is multiple myeloma?

Multiple myeloma can also affect your bones, leading to bone pain, thinning bones and broken bones. Reduced kidney function. Multiple myeloma may cause problems with kidney function, including kidney failure. Low red blood cell count (anemia).

Is multiple myeloma a terminal?

Unfortunately, though, myeloma is currently an incurable (terminal) cancer.

What is usually the first symptom of multiple myeloma?

The early signs, which can vary among individuals, include: Bone pain (particularly in the spine and ribs) Excessive bruising or bleeding. Unexplained bone fractures (especially in the spinal vertebrae)

Can you live 20 years with multiple myeloma?

While multiple myeloma doesn't yet have a cure and can be fatal, patients' life expectancies vary widely, according to Jens Hillengass, MD, Chief of Myeloma at Roswell Park Comprehensive Cancer Center. “I have seen patients live from several weeks to more than 20 years after being diagnosed,” Dr. Hillengass says.

Is myeloma a death sentence?

Today, a multiple myeloma diagnosis is no longer a death sentence because our community's efforts have helped bring 11 new drugs through FDA-approval.

What triggers myeloma?

What Are Its Causes? Exposure to toxic chemicals, atomic radiation, anything that interferes with the immune system, or infection with cancer-causing viruses have all been implicated as causes or triggers of myeloma.

What foods should I avoid with multiple myeloma?

Since multiple myeloma makes your immune system weaker, you'll need to steer clear of any foods that could make you sick, including:Raw meat or fish.Runny eggs.Unpasteurized drinks.Sushi.Unwashed fruits and vegetables.

Where does myeloma spread to first?

At first, the cells reproduce in the bone marrow of the spine. From there, they enter the bloodstream and travel to bone marrow in other parts of the body. They collect in the bone marrow and the hard, outer part of the bones. As this progression happens, the plasma cells can cause multiple tumors.

Is multiple myeloma curable 2020?

Multiple myeloma is a type of blood cancer for which there is no cure. In 2020, of all patients newly diagnosed with a blood cancer, 18% are expected to be diagnosed with this type of blood cancer. Depending on the stage, the average survival rate is five to seven years.

What is the MMRF?

The Multiple Myeloma Research Foundation (MMRF) is a 501 (c) (3) non-profit organization established in 1998. The group’s mission is to find a cure for multiple myeloma by pursuing innovation that accelerates the development of next-generation treatments to extend the lives of patients. The MMRF is focused on using precision medicine ...

What is MMRF in medicine?

The MMRF is focused on using precision medicine to help patients get the right treatment based on their specific molecular information. The MMRF gathers, generates and analyzes vital information about multiple myeloma, patients, and treatments, shares the data with researchers and institutions, and evaluates new treatments through a collaborative research consortium. These efforts are helping to accelerate discovery and produce better, more targeted treatments for people living with multiple myeloma.

What is MMRF CureCloud?

You can help yourself — and every multiple myeloma patient. The MMRF CureCloud® is a research study that includes the first at-home genomic testing program designed to ultimately inform smarter treatments for you . Your data can help researchers identify the best treatment paths for you and ​all​ myeloma patients. We hope all myeloma patients will join. Here, you’ll learn, step by step, how to become an MMRF CureCloud participant.

Who signs blood draw order form?

Your doctor signs your Blood Draw Order Form and sends it to the MMRF.

Does MMRF test for myeloma?

We send you and your physician a report that will list certain genetic variations in your myeloma cells, if any are detected in the blood sample that you provide, along with timely information about potential clinical trials for your specific mutation (s). Not every patient will have these specific actionable mutations in their myeloma genome, and this information is also valuable, as it may mean that certain targeted therapies or clinical trials are NOT appropriate for patients like you. The MMRF offers this cutting edge genomic blood test at no cost to you or your doctor.

What is MMRF CureCloud?

Introducing the MMRF CureCloud® — a research study that includes the first at-home genomic testing program for multiple myeloma patients. Our goal is to accelerate research toward smarter treatment options for every patient.

When was the MMRF founded?

Founded in 1998, the MMRF continues to blaze new trails in pursuit of a cure, acting with urgency to ensure every patient has the solutions they need to take the next step and ​find the right treatment. A nonprofit, the MMRF's innovative methods and relentless focus on better outcomes for patients have helped bring ​many FDA-approved therapies ...

Who is Mindy Flinn?

Mindy Flinn joined the MMRF in May 2020 as the Vice President of Development where she works with a talented team raising philanthropic support for the organization. She brings over 23 years of development experience to this position. Ms. Flinn spent over a decade in development at Mayo Clinic in Rochester, MN and in Jacksonville, FL, where she oversaw the stewardship of top-level benefactors and served as a major gift officer. She also worked for the LIVESTRONG Foundation in Austin, TX as a major gift officer and was Director of Philanthropic Resources at MD Anderson Cancer Center in Houston, TX. Prior to joining the MMRF, she was Senior Director of Development at Yale School of Medicine. Ms. Flinn received her Bachelor of Science in Biology from Bethel University and a Master of Business Administration from Cardinal Stritch University. Her additional accomplishments include successfully climbing Mt. Kilimanjaro in 2012 as a member of Survivor Summit and skydiving.

Does Patti have multiple myeloma?

Patti has smoldering myeloma and had no signs or symptoms of her disease when she was diagnosed. During her annual physical her bloodwork came back abnormal, so her physician ordered further testing. Patti is now in a study where some of the smoldering patients receive Revlimid for treatment and the remaining patients remain under observation without treatment. The test is to see if the medication will help eradicate the smoldering Multiple Myeloma. As a result of the study, Patti now gets blood tests every month and every year she will get a PET scan and bone biopsy to keep an eye on the status of her Multiple Myeloma.

Can you donate to a myeloma patient?

You can help accelerate a cure for each and every myeloma patient. Click to explore ways that you can donate.

Total Revenue and Expenses

This chart displays the trend of revenue and expenses over the past several years for this organization, as reported on their IRS Form 990.

Largest Programs

The Multiple Myeloma Research Foundation reported its three largest programs on its FY 2019 Form 990 as:

Mission

The MMRF’s mission is to accelerate a cure for each and every multiple myeloma patient. Founded in 1998 by Kathy Giusti, a myeloma patient, and her sister Karen Andrews, the MMRF works tirelessly to bring new treatments to patients faster, and to build models that acquire new data critical to pursuing a cure for the disease.

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About Multiple Myeloma

Multiple myeloma is a type of cancer formed by cancerous plasma cells. Normal plasma cells are found in the bone marrow and are an important part of the body’s immune system. When plasma cells grow out of control, they can form a tumor, usually in the bone marrow.