Building a Collaborative Research Network to Address a Rare Disease

Early June 2016

Chris had extreme leg pain off and on for about a month. Pain that came and went, creeping in slowly but sometimes with extreme intensity. Based on x-rays an orthopedist diagnosed a torn hamstring that was on the mend. We were sent home to rest and ice his muscles.

One Sunday Chris played in the pool for 5 hours straight and didn’t wince once. The following week he was fine so he went to soccer practice on Wednesday and swim team practice the next day. At 11:30 that night he woke up screaming in pain. Same leg. Same spot. Back again.

Late June 2016

We were on vacation in Greece. The pain started again, severe and intense and scary, so bad he couldn’t sleep lying down in a bed.  Desperate, we ended up in a Greek hospital… the local pediatrician was wonderful and recommended we fly home and see an orthopedic doctor as soon as possible…a terrifying flight home: No answers and a pit in our stomachs. Chris was in a wheelchair.

July 2016

We finally got the orthopedist to order the MRI. The MRI results were what every parent fears: “leukemia or lymphoma” and a referral to an oncologist.  After many invasive tests, the oncologist said it was probably not cancer.  We felt such relief, but we were left with no answers for all his pain. We moved on to infectious disease.

August 2016

The infectious disease specialist said they could not culture anything so they didn’t believe that Chris had an infection. Again, incomplete answers.  We were then passed off to rheumatology.  The frustration of not having any answers and our child still in pain was heart-breaking, isolating, and terrifying.

Based on the bone biopsy and MRIs the rheumatologists finally gave Chris a diagnosis: Chronic Recurrent Multifocal Osteomyelitis (CRMO often pronounced “chromo” for short).

The good news: it was not cancer; the bad news: very little is known about CRMO because it is a rare disease.

Continue reading “Building a Collaborative Research Network to Address a Rare Disease”

Seeds of Change Award Recognizes Commitment to Local Community

Nicole Haselwander and Stephanie Shea accept the Seeds of Change award for Promega.

Community Shares of Wisconsin presented Promega with its Seeds of Change award for our workplace giving efforts. The award is presented to a local business that shows innovation, growth, and commitment to Community Shares of Wisconsin. Over the past 15 years Promega and our employees have collectively contributed more than $717,000 to Community Shares work! Our 100% corporate matching helps employee gifts go twice as far to member nonprofits and the community.

Charitable giving programs and paid time off for community service are examples of Promega’s commitment to corporate responsibility. Learn more at https://www.promega.com/responsibility #corporateresponsibility

Nicole Haselwander and Stephanie Shea were on hand at the Community Change-Maker Awards hosted by Community Shares of Wisconsin to accept the Seeds of Change award on behalf of Promega Corporation. “It was an incredibly inspiring and uplifting program,” says Stephanie.

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Next-Generation Genomics Education: Educating and Preparing the Next Generation

Students pursuing their interests wit h hands-on activities at BTC Institute.
Students pursuing their interests wit h hands-on activities at BTC Institute.

The BTC Institute has many partners in creating educational opportunities in the molecular biosciences. In recent years, we have worked with the Dane County School to Work Consortium (DCSWC) to create a unique, one-semester class aimed at giving high school Juniors and Seniors interested in scientific research and health careers a chance to explore how concepts they have been learning about in their biology and biotechnology classrooms are used in the laboratory.

To take it one step further, these laboratory experiences are tied to the Gates Foundation Grand Challenges in Global Health. The Challenges provide a framework to help students understand worldwide concerns, including ways in which biotechnology can be applied to generate solutions to these problems. Students are encouraged to place scientific challenges within social and socioeconomic contexts which, in turn, make some solutions more appealing than others. This holistic approach provides the “real world” milieu that is so sought after in academic endeavors. Continue reading “Next-Generation Genomics Education: Educating and Preparing the Next Generation”