May 9, 2012

Trio of Bulldogs Take on “Tough Mudder” for Myotonic Dystrophy Foundation

Accurso, McConnell and Sharp Continue Work Started by "Get a Grip" Campaign

NEW HAVEN, Conn. – For a cause close to their hearts, three members of Yale's Ivy League champion field hockey team will spend Mother's Day battling obstacles such as mud, fire, ice water, 10,000 volts of electricity, 12-foot walls and underground tunnels. It is all part of the "Tough Mudder" challenge in Pocono Manor, Pa., and the three Bulldogs participating -- freshman forward Jessie Accurso (Jamison, Pa./Central Bucks South), junior goalkeeper Ona McConnell (London, England/American School) and junior forward Maddy Sharp (San Diego, Calif./La Jolla) -- are using the challenge to raise funds for the Myotonic Dystrophy Foundation. McConnell was diagnosed with that disease, the most common form of muscular dystrophy, during her freshman year at Yale.

Ever since McConnell was diagnosed, the Bulldogs have held annual "Get a Grip" fundraisers in which supporters pledge donations based on the number of goals the team scores each season. The first "Get a Grip" campaign, in 2010, raised more than $50,000. While raising funds for the Myotonic Dystrophy Foundation, the Bulldogs have also been breaking records -- they scored a school-record 69 goals last year en route to winning a share of the Ivy League title for the first time since 1980.

"Given the success of the 'Get a Grip' campaigns, I've been eager to find other ways to spread awareness of myotonic dystrophy across and beyond Yale's campus through some sort of event that would catch people's attention more than an ordinary fundraiser would," said Sharp, Yale's captain for the 2012 season. "The purpose of the Tough Mudder campaign is to raise awareness, funds for scientific research, and support for Ona and others afflicted by this rare disease."

The 12-mile Tough Mudder obstacle course, billed as "probably the toughest event on the planet", is designed by the British Special Forces. It tests all-around strength, stamina and camaraderie. There are 25-30 challenging obstacles, including many that require teamwork to overcome. Roughly 15-20% of those competing do not complete the course.

Shortly after being diagnosed with myotonic dystrophy (or DM, for dystrophia myotonica), McConnell became a board member for the Myotonic Dystrophy Foundation.

The most common of the nine forms of muscular dystrophy, DM is a rare genetic disorder that can cause problems with many systems in the body. Muscle issues are often, although not always, one of the first complaints of adult patients, characterized by the following:

  • muscle weakness, most commonly seen in the arms, face, neck and often legs
  • progressive muscle wasting (atrophy)
  • stiffness and difficulty relaxing a muscle (myotonia)

However, classifying myotonic dystrophy simply as a muscle disorder is misleading because of the range of systems that can be affected. The severity of symptoms seen and the range of systems affected can vary greatly between patients, even in the same family. In addition to muscle problems, issues with respiratory function, heart abnormalities, cataracts and the gastrointestinal tract are often seen. However, an affected person does not typically exhibit all, or even most, of the possible symptoms. Often, the disorder is mild and only minor muscle weakness or cataracts are seen late in life. At the opposite end of the spectrum, life-threatening neuromuscular, cardiac and pulmonary complications can occur in the most severe cases when children are born with the congenital form of the disorder.

There is currently no cure for myotonic dystrophy.

Despite the physical challenges that her condition presents, McConnell remains on the field hockey team and has twice earned Yale's Amanda Walton Award, "given by the Yale players and coaching staff to that team member who demonstrates the ability to confront challenges, displaying the courage to overcome them, while inspiring teammates with her work ethic and unselfish attitude."

The weakness and cramping that McConnell experiences will present an extra challenge for her during the Tough Mudder, but she remains committed to getting through the course with her teammates.

"I would have done this if I were fully healthy, so I'm going to try to do it even if I'm not," said McConnell. "I'm definitely going to be out there and try my very hardest to do what everyone else does."

The Myotonic Dystrophy Foundation is a non-profit, 501(c)(3) organization founded by families living with myotonic dystrophy. Through education, advocacy and research, MDF is committed to establishing a voice and a face for this disorder. The MDF works in tandem with medical and scientific leaders to mobilize resources in order to help affected individuals, their families and medical professionals understand this complex disorder and to develop treatments and ultimately a cure for this disease.

The MDF has created a special donation campaign for the Tough Mudder event under the name "Yalies Against Myotonic Dystrophy." 

Accurso, McConnell and Sharp are not the only members of the Yale Field Hockey family taking on endurance challenges for a cause. Former Bulldog Rachel Lentz '07, a student in the Yale School of Medicine, recently ran the Boston Marathon as a fundraiser for the National Multiple Sclerosis Society on behalf of her mother, who has MS. This was Lentz' third marathon, and she raised more than $5,000.

"She is my inspiration -- in life and running," said Lentz. "It gives me a tremendous amount of pride to have her name on my back for 26.2 miles, knowing that although she can't walk, she's still there, running the marathon with me."

Report by Sam Rubin '95 (sam.rubin@yale.edu), Yale Sports Publicity 

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