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Community Corner

I Would Walk 500 Miles (for Multiple Myeloma)

A rainy-day 5K for a personal cause morphs into a lesson on a deadly disease.

I think we can all agree that this past Saturday was not an ideal day for a 5K race. It was pouring rain that morning, and something like 45 degrees outside. Any other day, any other race, I would have just stayed in bed.

But this one was a biggie: the Miles for Myeloma 5K in Philadelphia. My family formed a team and ran/walked in this race to honor my Aunt Sue, who passed away from the disease in March. Just before she died, though, she designed our team T-shirt and, always the funny one, named the team "Sue's Nuts." Clad in those matching T-shirts—and ponchos!—our team of 20-plus participants braved the elements and completed the 5K.

But it occurred to me that people might not know what multiple myeloma is. I didn't until Aunt Sue got diagnosed. So I got in touch with two people who could give us all a little more insight into the disease and the event: Dr. Dan Vogl, assistant professor of medicine, Myeloma Program, Abramson Cancer Center of the Hospital of the University of Pennsylvania (HUP); and Marilyn Alexander Kostrow, one of the group leaders of the Philadelphia Multiple Myeloma Networking Group.

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West Deptford Patch: Let's start with the obvious—what is multiple myeloma?
Dr. Dan Vogl: Myeloma is a cancer of plasma cells, which are normally part of the immune system and live in the bone marrow at the center of our bones. When these cells develop into multiple myeloma, they can cause bone lesions, high blood calcium levels, low blood counts, kidney injury and susceptibility to infection.

Patch: How common is multiple myeloma compared with other forms of cancer? Are experts any closer to finding a cure for it than for other cancers?
Vogl: Myeloma is one of the more rare types of cancer, affecting about 20,000 new patients each year in the United States. We have made some amazing advances in recent years in treating myeloma, extending survival and improving quality-of-life for patients. We have not yet found a cure, but we continue to work on it.

Patch: How long have you been involved with the Miles for Myeloma 5K?
Vogl: This is my third year. The Philadelphia Multiple Myeloma Networking Group, which organizes the event, is a fantastic community of people with myeloma and their loved ones. They provide a wonderful resource for patients to get information about the disease and its treatment, and their fundraising efforts have made a real difference in advancing myeloma research.
Marilyn Alexander Kostrow: I have been involved with the 5K since we started three years ago. I got involved because I am a 17-year survivor of MM and know that the only way to find a cure for this much-dreaded disease is through much-needed research. The only way to do research is to get funding. That is now my goal.

Patch: Were you surprised at how many people turned out for the event despite the weather?
Kostrow: I was stunned at how many people turned out for the event on such a nasty, rainy day. I don't think I would have been there if I were not involved. However, I would say that most of the people were directly involved, either having a family member or friend who has multiple myeloma or they themselves have it and they wanted to be supportive.

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Patch: What was your fundraising goal for this event, and did you meet that goal? How will the money be used for myeloma research?
Kostrow: The fundraising goal for the event was $90,000 and we far exceeded our goal. The money will be sent to three organizations who will help the Multiple Myeloma Community directly. They are: the International Myeloma Foundation (IMF); the Multiple Myeloma Research Foundation (MMRF); and the Leukemia and Lymphoma Society-Financial Assistance Program (LLS).  

Patch: Are there any events scheduled in the future that will benefit multiple myeloma research?
Kostrow: The Miles For Myeloma event takes about a year of planning, so we concentrate our efforts on this event. There are so many details that need to be worked on throughout the year.

When we are not working on the event, we run a cancer support group called the PMMNG (Philadelphia Multiple Myeloma Networking Group) that meets on the second Saturday of every month at the Ralston Center at 3615 Chestnut St. in Philadelphia.

We will continue to have our 5K races every year to help the Myeloma community raise research dollars, so that someday soon, we may find a cure.

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