There are over 7000 types of rare diseases that affect over 350 million people worldwide and approximately 80% of those rare diseases are genetic (meaning they are caused by an inherited gene mutation).  However, because of the relatively small number of people affected by each individual disease they often do not get the attention that the other major diseases do.  For example, it is estimated that 95% of rare diseases have not one single FDA approved drug treatment and 50% of rare diseases do not have a disease specific foundation supporting or researching their rare condition.

There are several reasons why Steel consider this such a special night and want to bring attention and awareness to the matter.  During the 2014-15 season the Steel created the First Annual Rare Gene Awareness Night by honoring the daughter of Steel General Manager Bryant Black who passed away from a rare genetic disease called Zellweger’s.  The money raised from that night was donated to the Global Foundation for Peroxisomal Disorders.

This year the Steel want to create awareness for another rare genetic disease that once again hits close to home with the Steel.  Two of the first faces you see when walking through the doors of the White Bear Lake Sports Center are Duncan and Teri Woodhull.  Behind the warm hearts and smiling faces of the Woodhull’s is a genetic disease that Teri has been battling with for years…ovarian cancer.

Ovarian cancer is considered a rare disease as there are only about 22,000 women diagnosed in the U.S. each year.  Even with those small numbers it is the 5th deadliest cancer for women with approximately 15,000 women dying each year.  Since 1977, no increase has been achieved in the percentage of women who survive ovarian cancer.  A significant number of ovarian cancers are caused by an inherited gene mutation like the BRCA mutation that runs in her family. 

This year’s donation will be given to FORCE (Facing Our Risk of Cancer Empowered) a national non-profit dedicated to support, education, advocacy, awareness, and research specific to hereditary breast and ovarian cancers.  Tax deductible receipts will be available for donations.

The puck drops at 7:00 on the 26th.  We welcome all to attend and support the Steel’s 2nd Annual Rare Gene Awareness Night.