USU Research Foundation Team Raises Funds for Rare Autoimmune Condition

Bonnie Schenk-Darrington and Kim Wengreen, receptionists at Utah State University Research Foundation, have started a walking team for the Myasthenia Gravis Walk that takes place in Salt Lake City Oct. 15. The MG Walk is sponsored by the Myasthenia Gravis Foundation of American (MGFA).

Schenk-Darrington and Wengreen believe their team, the Bon Bons, is the only one from Cache Valley.

Myasthenia Gravis is a rare autoimmune disorder causing muscle fatigue and weakness. The body mistakenly makes antibodies hostile to the acetylcholine receptors on the muscle surface, preventing muscle contraction. According to the MGFA website, approximately only 20 in 100,000 people have MG, so it is considered a rare condition. Treatment generally consists of drug therapy and/or removal of the thymus, a gland in the upper chest that has been associated with the disorder. There is no cure.

This is the first MG Walk held in Utah. Past walks in other cities have raised awareness and money to fund research into better treatments and an eventual cure for MG.

“Autoimmune diseases are really devastating,” said Wengreen. “They really disrupt your way of life.”

Her family has also been affected by other autoimmune diseases, so she is participating in the walk to show support and raise awareness.

“I was so excited to find out the MG Walk was coming to Salt Lake!,” Schenk-Darrington said. “I’ve wanted to participate for a long time. Usually they have been in big cities like Houston and D.C. I didn’t think I would ever get to be in one.”

Schenk-Darrington was diagnosed with MG in Jan. 2013. It was life-changing.

“I have to be very careful to get enough sleep, always remember my meds, eat really healthily and to not overdo it. If I don’t get enough sleep or am on my feet too long, my legs get really weak and I have trouble breathing.”

Her first indication something was wrong was a severe case of double vision, followed by a badly drooping eyelid in the summer of 2012. She went to six doctors in Logan and Ogden before she received a diagnosis.

“The MGFA says that they think MG is underdiagnosed,” Schenk-Darrington said. “That’s partly why I would really like to get the word out to people.

“Also, I am doing this because it’s an organization and cause that I really believe in.”

Schenk-Darrington said that thus far her fundraising effort has consisted of asking friends and Cache Valley businesses for donations. She has also posted about the MG Walk on her Facebook page.

For more information or to donate, visit the Bon Bons’ MG Walk team page.

Contact: Bonnie Schenk-Darrington, bonnie.darrington@usurf.usu.edu