After six years of successful fundraisers that work toward a cure for the Tay-Sachs disease, Blue Sky Winery may host its final campaign Saturday.
“We continued it last year and we continued it this year, but it sounds like this might be the final benefit that we do for this organization,” said Jim Ewers, the winery’s co-owner.
The benefit started in 2006 after Elise Rochman, the granddaughter of Blue Sky Winery co-owner Barrett Rochman, was diagnosed with Tay-Sachs disease in 2005. Tim and Kerri Rochman, Elise’s parents, then learned about the Cure Tay-Sachs Foundation, a not-for-profit organization geared toward funding research that may help find a cure for the disease.
The foundation’s popularity has grown since its beginning, when it was started by a group of parents who had children afflicted with the disease, and it has partnered with more people and places such as Blue Sky. However, it has become harder to organize the event over recent years with family members moving away or growing older, said Karrie Ewers, Jim Ewers’ sister and assistant to the benefit’s silent auction coordination.
“The family has kind of spread out a little bit more and moved to Seattle,” Ewers said. “Because of this, we don’t have quite the workforce we did in the past. We’re getting older, too; we need a younger group to take this on.”
Tay-Sachs is a hereditary disease caused by a defection in the Hex-A gene, which is an important half of an enzyme that plays a vital role in the central nervous system, according to the Genetics Home Reference website.
This defection results in a premature deterioration of cells and eventually death.
There are no treatments for the disease, but efforts toward a cure such as Saturday’s benefit help doctors get closer to that goal, according to the foundation’s website.
Tim Rochman, Elise’s father and Barrett Rochman’s son, said Blue Sky has raised more than $200,000 for the Cure for Tay-Sachs Foundation over the past six years.
Rochman said the benefit not only raises awareness and funds for the foundation, but it also helps unite families who have dealt with the disease.
“This is just another way to bring us all together,” he said. “You know for the families it’s a good time. We all hang out and just share time amongst people who are going through the same thing we went through, so I think they appreciate being around families who are in similar situations.”
Ken Bihn, president of the foundation, and his daughter Dakota, who has the disease, will be at the fundraiser along with several other families from different parts of the country, Rochman said.
The benefit runs from 10 a.m. to 8 p.m. with free admission and activities that include a silent auction as well as a coed bag toss tournament called Toss for Tay-Sachs.
Ewers said the silent auction tends to raise the most money at the event. She said the auction raised around $18,000 last year.
Fern Palmer, coordinator of the silent auction, said the auction’s items are quite impressive this year and should interest anybody looking for a unique purchase.
One item in particular always receives numerous bids, Palmer said. She said there is a jet plane ride donated to the auction by Greg Cook of Cooks Portable Warehouses. The highest bidder wins a private jet service for seven passengers that goes anywhere in a 1,200-mile radius from Marion.
Some other items include tickets to a Cardinals or White Sox game, tickets to the Shedd Aquarium in Chicago, a cabin stay in Saugatuck, Mich., gift certificates to local restaurants and many more.
Tim Rochman said there will also be live music, and none of the bands play the same style of music so there will be something for everyone to enjoy. Some bands include Dave Clark, Building Rome, Bill Harper, Concordia and South of 70.
“We have a wide variety, so it’s going to be nice, mellow music from country rock to a pop-punk/acoustic two-man set,” he said. “It’s definitely going to appeal to anyone high school and over, I guess, all ages would be the best way to describe it.”
The music will start at 12 p.m. and end at 8 p.m.
Tim Rochman said his father’s generosity does not stop at the Tay-Sachs event. He has also donated to the Ryan Rendleman scholarship, which was named after a Daily Egyptian photojournalist who was killed in a car accident April 29, 2008, while he was on his way to photograph the 3rd annual Tay-Sachs Benefit Concert.
Tim Rochman said he didn’t know Ryan personally, but he knew he was a hard-working journalist who went the extra mile to obtain quality content.
Rochman said his son’s middle name came from the memory of the deceased photojournalist.
“I was the one that talked to him the night before he came up,” Rochman said. “He is definitely in our hearts, and I’ll always remember him. Elise’s middle name was Ryne, after Ryne Sandberg, but I switched it up and did Ryan for (my son) Sammie in honor of Ryan.”
According to the Cure for Tay-Sachs Foundation’s website, an update was released in July that stated research has moved into a clinical trial phase where doctors and scientists will determine effectiveness, safety and overall data on how certain drugs may effect the disease.
The update shows the clinical process is a very crucial part of finding a cure, but it will require further funding from resources like the Tay-Sachs Benefit Concert.
Palmer said this is a small price to pay for any parent who wants to make an effort in helping their children.
“You’ll do anything to save your child, you know?” Palmer said. “I mean, when you’re a parent it’s just what you do.”