Tuesday, February 4, 2014

Announcing www.myelomacrowd.org launch! First "one-stop-shop" for multiple myeloma

I'm so excited to announce the launch of www.myelomacrowd.org! A BIG HUGE kudos to my fellow myeloma warrior, Jenny, for this monumental achievement. The amount of hours she put into this site is unimaginable.

Jenny and I met via Twitter. She noticed a photo I posted and recognized the Wasatch Mountains in the background. "I think we're neighbors," she Tweeted. We met up for lunch and, since then, we meet about once a week.

I believe the God brought us together, partners in fighting this disease, and, in whatever way I can, partners in making a difference in the myeloma community. When I was diagnosed with myeloma in January 2012, I was so overwhelmed by my diagnosis. I went online and found many outdated sites with alarming prognosis. While there are excellent and credible sites out there, this one is comprehensive and easy to navigate. Check it out!

The First One-Stop-Shop for the Multiple Myeloma Community Launches – www.myelomacrowd.org

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. Here I was making life saving decisions and knew little about my options. 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 one-stop-shop for myeloma.”

The new myelomacrowd.org site 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 about myelomacrowd.org and want to help patients get up-to-speed as quickly as possible on the disease,” says Ahlstrom. “By highlighting the great work being done in Myeloma by so many individuals and organizations, I believe that  patients can now be better poised in making decisions that directly affect our care and outcomes.”
 
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About Multiple MyelomaMultiple 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.

About www.myelomacrowd.org
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 AhlstromJenny Ahlstrom was diagnosed with Multiple Myeloma in 2010. Following tandem stem cell transplants and two years of maintenance therapy, Ahlstrom is currently in remission. 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 is Ahlstrom’s passion. She is a mother of six children, ages six to 19. She lives near Salt Lake City, Utah.