Writers to raise money for disease

The Rehoboth Beach Writers’ Guild will host its fifth annual Writers at the Beach Conference next month, on March 25-28. The four-day event, held to raise money for mitochondrial disease, will be held at the Atlantic Sands Hotel in Rehoboth Beach.

The conference was started by local writer Maribeth Fischer, who intended it to be a one-time event to support awareness and research into the disease that killed her two young nephews. After its initial success, though, she decided that, with the jazz festival, film festival and local art leagues already in the area, a writer’s conference was the perfect formal artistic outlet for writers.

“I thought it was a one-time event for charity, but it was really successful, and I thought, ‘You know, why not keep that community going all year?’ so that’s how it started,” Fischer said.

In 2005, Fischer, who was teaching full-time, decided to take a year off. There were many reasons for her sabbatical.

“I wanted to do something to help. I felt very helpless, I mean there was not a lot I could do to help my sister in terms of medical care, and I thought, ‘Well, I’ll do something.’ So I thought I would do a fundraiser,” said Fischer.

“I also needed to finish my book,” she noted. “I really thought I was taking one year off and doing this one-time event, but I found out that I loved doing it and it was successful, and it’s evolved into an ongoing thing.”

The conference has no deadline for registration, which is open up to the first day of the conference and costs $235. There is no limit to the number of people who can register for the conference, but space within individual workshops is limited.

“The thing is we try to limit workshops so there is more of a focus on each person,” Fischer explained. “We’ll take people as long as there’s seats are available.”

Workshops are attended and run by various members of the writing community, from authors and those in the publishing industry to college professors.

“You know, it’s an amazing thing to me,” Fischer said. “I’m writing to these authors. I’ll read a review of their book, or I’ll read their book, and I’ll fall in love with it. These people are strangers to me,” she explained. “For the first year, I just wrote them a letter: “This is what I want to do. I’m holding this conference. I can’t pay you. I can’t pay for your transportation, food – nothing.’ And they agree to do it. Some of them pay for their own lodging; no one makes a dime off of it.”

One speaker that Fischer contacted was U.S. Sen. John McCain’s literary agent, who, upon reading the request said, “Sure I’ll be there,” and was.

“To me, that’s the amazing part of it,” Fischer marveled.

This year, the conference has a few new points of interest that are likely to interest anyone who is interested in working on their writing.

“We actually have a biologist that is going to take us on a field trip and we are going to write about that, and we also have a woman who will be doing a workshop with meditation, to help develop characters.”

The conference includes an open-mic night, which will take place Saturday night, starting at 8:30 p.m.

“That will be if someone from the conference that wants to read what they have written, they will have the chance,” Fischer explained.

Thursday night, the conference will be open to the public as attendees mingle in the Atlantic Sands Hotel restaurant. Charity Case, a group that has previously performed at Ovations and the Milton Theater, will perform.

There will also be a free kid’s writing workshop Saturday at Browseabout Books in Rehoboth, where parents can hang out while their kids participate and write. There workshops are separated into two age groups, 10 to 11:15 a.m. for ages 9-11 and from 11:30 a.m. to 1 p.m. for ages 12 and older. Parents simply need to call and say their child wants to participate.

The conference’s host, the Rehoboth Beach Writers’ Guild, was founded by Fischer, who currently serves as guild president. The guild offers a multitude of resources for area writers, such as “Free Writes” and writing contests. The guild also offers classes on writing novels and writing the personal essay, among others.

“I founded it right after our first conference in 2005. I founded it because I realized there were so many people who came to the conference, that there were just a lot of writers in the area,” Fischer said.

She currently teaches fiction writing at the University of Delaware, works in their writing center and has published two novels.

“I actually went to college to become a high school English teacher, and I took a creative writing class and decided then and there I was going to be a writer,” explained Fischer. “I didn’t care if I was going to waitress for the rest of my life.”

Fischer’s two novels are “The Language of Good-bye” and “The Life You Longed For.” Fischer said her most recent book is a love story for her nephew, to whom she dedicated it.

“It’s about a little boy with mitochondrial disease,” Fischer said. “I could’ve made the child have any disease, but I chose mitochondrial disease because I was trying to bring attention to it.”

The guild currently has approximately 100 members, and with membership open to the public, it is growing.

“All of the events the guild does are open to the public. You don’t have to be a member. Everything is open; the only thing you have to pay for in the writer’s guild is the conference and the classes. The membership is more of a pledge of support.”

The writer’s guild now hosts the conference, and Fischer said she is grateful for all the member support.

“It’s all volunteer members from the guild,” she said of the behind-the-scenes work on the conference. “People bake things and do fundraisers. We have a guild member who’s a graphic designer, who has done designs for the conference. Guild members they’re running it.”

More than 160 people attended the conference in 2008, with 37 authors and industry members donating their time, free of charge. In total, over the four conferences Fischer has held, they have been able to donate more than $50,000 to research on the disease.

“The money we raise, I’m really proud of it,” she said. “But when you talk about medical research, that’s not much.

“But for me, the main thing is to get the word out about the disease,” Fischer said. “My hope is to inform people, because it’s such an unknown disease and if it’s not known, nobody is going to give money to it. This disease is so hard to diagnose, it’s so much more prevalent. So many people’s kids have this disease and, like my sister, they go from doctor to doctor to doctor, for years, not knowing what’s going on. If people became more aware of it, then they could ask questions about it.”

In previous years, the money raised for research on the disease was donated to the United Mitochondrial Disease Foundation. This year however, Fischer said she wants to keep the money local, by donating the funds raised to Nemours/Alfred I. duPont Hospital for Children, and it will be donated in memory of the two nephews Fischer lost to the disease, Sam and Zachary Juhlmann.

“Sam, who was 7 – I was very close with him because, when he was born his older brother was in the hospital for five months, and I took care of him. He was in first grade. He had a girlfriend. He thought he was king of the world. And this was a kid who was in wheelchair, tubes coming out of hi, and hearing aids, but he didn’t know that he was sick,” Fischer recalled. “You know, he had been that way his whole life. And the kids were young enough that they didn’t realize he was sick, either, so he never had any of that cruelty.”

“His older brother, Zachary, was 15 when he died. He was really creative – wanted to be a CEO of a company and make lots of money,” continued Fischer.

“Both boys had wishes granted through Make a Wish Foundation. Sam wanted to go to Disney World and meet Donald Duck; they had breakfast with Donald,” she recalled. “Zachary, by the time he could make a wish, he could not travel anymore, so what he wished for was a game room. So the Make a Wish Foundation turned their basement into a great game room. He was in the hospital at that time, so they sent a limo and they had a big party when he got home.”

Mitochondrial disease is a little-known disease that affects as many as 1 in 2,000 kids. Mitochondria are organelles within a cell that process all of the cell’s chemistry and functions. Mitochondria contain separate DNA, passed on by the mother, from that of the rest of the cell. Scientists believe they were once free-living cells.

Mitochondrial disease occurs when the mitochondria cannot process energy; essentially the biochemistry of the cell becomes impaired and cannot function properly, causing cells to die. Eventually whole systems within the body, such as respiratory and cardiovascular systems, shut down.

“With my nephews, it was kind of always a terminal prognosis,” Fischer noted. “We had a poster up at our first conference with pictures of 15 different kids with mitochondrial disease, all ages, at all different times. And of those 15 kids, 14 have died. I mean, that’s really devastating.”

Fischer said she is happy that the money raised from this year’s conference will go to children battling the disease within Delaware. She hopes the donation will help children pay for their testing and treatment.

“This year, we decided to donate to the children’s hospital because we wanted to give the money to go directly to help the families. A fund is going to be set up, for children who are going through test or being treated for mitochondrial disease there.”

For more information on the Writers at the Beach Conference, visit www.writersatthebeach.com. For more information of the Rehoboth Beach Writers’ Guild, visit www.rehobothbeachwritersguild.com.