FOR IMMEDIATE RELEASE
MYELOMA PATIENTS LAUNCH A COMPREHENSIVE, PATIENT-CENTRIC SITE FOR THE
MULTIPLE MYELOMA COMMUNITY -- WWW.MYELOMACROWD.ORG
www.myelomacrowd.org features Multiple Myeloma clinical trials, treatments, support groups, and much more to help patients and caregivers navigate through treatment and beyond
[Salt Lake City, Utah] When 43-year-old Jenny Ahlstrom was diagnosed with Multiple Myeloma in 2010, she had never heard of the second most common blood cancer. The diagnosis was overwhelming and making quick decisions on selecting an oncologist and treatment protocol was difficult.
“I simply didn't know enough about my disease to know where to begin," says Ahlstrom. "I needed information fast in order to make good decisions about my care and I was overwhelmed. I was making life saving decisions and knew little about my options. Of course I went online to learn more. It was hard to determine the credible voices, find the best facilities and the best treatment options for this uncommon cancer. Three years later, I had completed my treatment and achieved remission. That's when I decided to help other patients like me and create a patient-centric and comprehensive site for myeloma.”
The myelomacrowd.org website is the first place caregivers and newly diagnosed patients can turn to. Created by patients for patients, it offers a comprehensive and current view of Myeloma— all in one place. It features the latest in clinical trials, treatment options, patient support groups, upcoming Myeloma educational events and more. Patients can find oncologists that specialize in Multiple Myeloma, learn about different approaches to fighting the disease, learn about effective medications and their side effects, and hear personal stories from other Myeloma survivors. Because there are links to the most valuable and credible sources from the Myeloma community, patients need not conduct their own exhaustive searches.
"I wish that I had found a site like this one when I was diagnosed," says Myeloma survivor Lizzy Smith, who was diagnosed in 2012 at the age of 44. "The first thing I did was get on the Internet and look up my disease but much of what I found was confusing, alarming, dated and conflicting. Myelomacrowd.org is incredibly informative and will help other patients and their caregivers find the resources and support necessary to navigate this disease. There is so much being done in the way of new treatments and therapies and that is exciting and here I can stay up-to-date on that progress. "
“I’m excited to help patients get up-to-speed as quickly as possible on the disease," says Ahlstrom. "By organizing and highlighting the great work being done in Myeloma community by so many individuals and organizations, www.myelomacrowd.org can shorten the steep learning curve for patients, helping them make more informed decisions about their care.”
About Multiple Myeloma
Multiple Myeloma is a hematologic cancer, or cancer of the blood. It is the second most common blood cancer, after non-Hodgkin’s lymphoma. While Myeloma is not curable, thanks to the advancements of medications and treatment options, patients are living longer lives than ever.
Myelomacrowd.org is a newly launched site featuring everything about Multiple Myeloma and highlights the best resources available for the Myeloma community. Featuring comprehensive, updated and relevant information on a single site, patients are better able to make decisions affecting their care and stay educated about this disease.
About Jenny Ahlstrom
Jenny Ahlstrom was diagnosed with Multiple Myeloma in 2010. Following tandem stem cell transplants and two years of maintenance therapy, Ahlstrom is currently in remission. Along with other patients, Ahlstrom developed www.myelomacrowd.org, which features comprehensive information about Myeloma that is easy to understand and navigate. In addition to the information found on myelomacrowd.org, Ahlstrom also interviews Myeloma specialists throughout the world on the Mpatient Myeloma Radio Show (www.mpatient.org), which broadcasts most Fridays. On the show, experts discuss a range of topics that include protocols, research findings, new medications in the pipeline, and much more. The broadcast is open to the public and call-in information can be found on the www.mpatient.org site.
Making a difference in the lives of other Myeloma patients and living long enough to raise her six children (ages six to 19) is her passion. She lives near Salt Lake City, Utah.
about the author
Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical research. Founder of HealthTree Foundation (formerly Myeloma Crowd).
The Science and Art of Creating Your Personalized Myeloma Treatment Strategy with Dr. Murali Janakiram, City of Hope
Jun 13 / 18:00 PDT