Stepping Toward a Cure Saturday

Local mom Jenny Tischer is organizing a run/walk Saturday in her daughter’s memory to benefit the Dravet Syndrome Foundation.  She lost her two-year old daughter Maddie last June to the genetic disorder after she had a severe seizure. 

There are about 100 people already signed up for the “Steps Toward a Cure,” a 5K run/walk on Saturday. The event starts and ends at in Menomonee Falls.  People can still register on the day of the walk at Oakwood Park starting at 9:00 a.m.

Tischer hopes to not only raise funds to support the Dravet Syndrome Foundation, but to also raise awareness about the disease. 

“We also want to remove the stigma, and help people to realize that people who have Dravet Syndrome and epilepsy can look the same as other children.  At this run/walk families of children who have epilepsy can network and meet others dealing with similar issues,” Tischer said.

Dravet Syndrome is a form of epilepsy that is genetic, but not hereditary.  It occurs when a gene becomes mutated, truncated, or deleted.  It usually shows up when the child is less than one year old and begins to have seizures. 

This syndrome is different than other forms of epilepsy.  The seizures can last for hours, as opposed to the common seizure duration of 30 to 90 seconds.  Also, certain typical epilepsy medications can aggravate Dravet Syndrome causing more episodes. 

“Everything changes when a child is diagnosed with Dravet Syndrome.  There is no cure, but they are put on medications to treat it,” Tischer said.

According to epilepsyoutreach.org, it is estimated that 1 in 20,000 to 40,000 children have Dravet Syndrome.  It can only be detected with genetic testing.  Tischer knows of five children in southeastern Wisconsin who have been diagnosed with Dravet Syndrome. 

Tischer said there's hope for improved treatment for those with Dravet Syndrome, and a medical breakthrough is on the horizon.

“Hospitals funded by the Dravet Syndrome Foundation are in the final trials of two medications to stop the progression of Dravet Syndrome for those who have truncated or deleted genes,” Tischer said.

Tischer is dedicated to raising money for the research funded by the Dravet Syndrome Foundation.  She organized the fundraiser “Maddie’s Mall,” held in October 2010, which she plans to hold again this fall.  “Maddie’s Mall” was a home shopping extravaganza with vendors such as Tastefully Simple and the Pampered Chef who all donated their profits to the Dravet Syndrome Foundation. 

“We are trying to do whatever we can to honor Maddie,” Tischer said.

To Participate in the run/walk

To participate in the “Steps Toward the Cure” run/walk on Saturday, go to Oakwood Park the day of the walk at 9:00 a.m.  It’s $25 for adults, $15 for children 17 and under, and free for children under the age of three and persons who have Dravet Syndrome or epilepsy. 

Bagels donated from , bottled water donated by Hinckley Springs, and fruit will be provided for run/walk participants.

There will be a kid’s tent with balloons, activities, temporary tattoos and face painting.  A fire truck and squad car will be open for the kids to explore. 

There will also be a silent auction at Oakwood Park for items such as a suite for an Admirals game, Brewer’s tickets, signed sports memorabilia, and gift cards for restaurants and spas.