MPN Support Group Leaders Meet in Chicago

By Ann Brazeau

The MPN Research Foundation hosted a summit in Chicago on August 10th and 11th with patient support group coordinators from across the United States and abroad. Support group coordinators representing cities in the US came from California, Texas, Michigan, Illinois, Wisconsin, Massachusetts, Georgia, Ohio and Colorado. 

Kaori Taki hosts a group near Tokyo, Japan, and traveled the farthest for the second time to participate in this meeting. Lisa Lacamel, the Vancouver coordinator, joined us for the first time. 

The MPNRF provides ongoing support to the groups and is able to assist with recruitment, speakers, access to its website for meeting updates, access to brochures for distribution to cancer centers and hematology groups, and general information on forming a group as well as ongoing support when needed. 

Speakers included Ann Brazeau, VP of Development and Michigan support group coordinator; Barbara Van Husen, President of the MPNRF; and Robert Rosen, Chairman and founder. Marge Blocks, Wisconsin coordinator, gave a wonderful presentation on the very basic science, indications and how to read a CBC and understand one’s MPN diagnosis. Ron Anderson, coordinator from Los Angeles, recounted the history of the LA group. 

A brainstorming session at day’s end was useful in determining what the Foundation could do to better assist the groups and how the groups might assist the Foundation’s efforts in the future. The MPNRF hopes to host these events every other year. 

Click here to find a support group in your area.