November News Items

We've got a few news items to pass along:

  1. Health Tree – HealthTree is a patient-led community effort where myeloma patients own their data and merge it into a collective network with other myeloma patients. As patients enter their data into the HealthTree platform, the system educates them on personally relevant treatment options and clinical trials  they can discuss with their doctors. Over time, the collective data of many patients provides more context for patient / doctor collaboration.  See the video below to learn more about Health Tree!

  1. The PROMISE Study – All myeloma patients wonder if their family members might be at risk for developing the illness as well.  Now, there is a way for the first-degree relatives of any myeloma patient to help answer this question. These relatives can be parents, siblings or children of myeloma patients.  Dr. Irene Ghobrial from Dana Farber Cancer Center shares the new PROMISE study, the biggest myeloma screening study ever run to help prevent the blood cancer from occurring by catching it at an early stage. The PROMISE study is supported by a $10M Stand Up 2 Cancer award. The study will include patients over the age of 45 with family members of MGUS, smoldering myeloma, multiple myeloma or Waldenstrom’s patients and African American patients, who are 3 times as likely to develop multiple myeloma.  Joining the study is easy. You are mailed a kit which you take to a lab and the lab takes care of sending the samples to the researchers. What can we learn from the study of 50,000 people who are likely to be at risk for early myeloma conditions and their family members? Perhaps how to cure myeloma before it begins. Follow this link to learn more.

  1. Inclement weather notice – With the upcoming winter season, it is important to review our practice regarding the cancellation of meetings due to weather.
    1. If inclement weather is occurring, we will decide whether to cancel a scheduled meeting by 10 AM on the meeting day.
    2. We will send out an email to the group detailing the cancellation and will post the cancellation on our website.
    3. If any member is not clear about whether to come to a meeting due to the weather, feel free to check with either Marilyn Alexander ( 215-694-4146) or Maddie Hunter (732-261-3929).