Families team up to raise funds for Dravet organizationTwo Hastings families are teaming up with an Elma, Iowa, family to bring to Hastings a cause near to their hearts.
By: Katrina Styx, The Hastings Star-Gazette
Two Hastings families are teaming up with an Elma, Iowa, family to bring to Hastings a cause near to their hearts.
Alex and Patty Dohman and Brian and Deb Loesch, all of Hastings, and Brian and Amanda Meyers of Elma, Iowa, are hosting the first annual Cornhole for a Cure – a bean bag tournament fundraiser for Dravet.org. The event will be held Saturday, Aug. 4, at Dugarel’s Bar and Grill.
All three families have children living with Dravet (pronounced dra-VEY) Syndrome, a rare form of epilepsy for which there is currently no cure.
It’s been about two years since the Hastings Star Gazette first met the Dohmans and their daughter, Clover. Last year, we met the Loesch family and their daughter, Avery. Both girls had endured frightening and severe seizure episodes and illnesses.
This year, the families had good news.
“Clover is doing really, really well,” Patty Dohman said.
Avery had a long winter of illnesses, but her seizure control has been good, Brian Loesch said.
“Other than illness, she’s doing pretty good,” he said.
Clover’s been doing so well that the Dohmans have been able to decrease and even eliminate some of the medications she had been taking before. She started participating in equine therapy and just started school at Tilden’s Early Childhood Special Education program. She’s 3 years old this year.
Avery, age 5, is also starting school at Tilden ECSE in the fall, and has been talking much more, Deb Loesch said.
One improvement in treatment is that a key drug used in managing Dravet Syndrome symptoms, formerly available only in Canada, is now available in the U.S., Brian Loesch said. The best known medical cocktail consists of three drugs. Two are now available in the U.S. The third is only available in France, Patty Dohman said, and is extremely expensive.
“That medication could be like taking a second mortgage,” she said.
Trials are also under way at Gillette Children’s Hospital to test an existing cardiac drug that may improve seizure control.
Supporting the cause
The Loesch, Dohman and Meyer families are no strangers to Dravet.org.
“That’s the organization that’s near and dear to our heart,” Patty Dohman said.
Dravet.org is an organization of families and patients working with physicians, hospitals and others involved in caring for those with Dravet. While it works to drive research and make effective medications more available to patients, the organization is a resource for support as well.
Money from the Cornhole for a Cure will go directly to support Dravet.org. There will also be a toy drive to stock play rooms at the Dravet.org Professional and Family Conference for Dravet Spectrum Disorders – a national conference being held in Bloomington Aug.19. The conference is another key resource for families affected by Dravet.
“It’s how we meet other families,” Patty Dohman said.
Toys collected will go into child play rooms at the conference so parents can attend sessions. After the conference, toys will be donated to local hospitals.
The fundraiser itself includes a beanbag toss tournament, a beer bash, toy drive, a magician, raffle and food specials at Dugarel’s. The event is geared toward adults.
Prizes include Twins and Vikings tickets, a road bike and beanbag toss game boards. T-shirts with the event logo will also be for sale.
The cost is $40 per team. Registration begins at noon Saturday, Aug. 4. The tournament begins at 1 p.m. There is no limit to the number of teams.
The Cornhole for a Cure beanbag toss is intended to be a regular event in Hastings.
“We want to make this an annual event,” Patty Dohman said.