By:  Kelly Rouba

Ticket Sales and Auction of Custom Guitars and Amps to Benefit The Ocular Immunology and Uveitis Foundation

Back in the 80s, the rock band Twisted Sister became well known for its hit songs “We’re Not Gonna Take It” and “I Wanna Rock.”

But to the band’s founder and guitarist Jay Jay French, it seems that for as many people who know of Twisted Sister, just as many have never heard of the devastating eye condition called uveitis that he has watched his daughter Samantha, now 17, suffer from since she was six years old. “I decided about three years ago I wanted to create awareness because so few people know what this disease is,” French said.
Simply put, uveitis is an inflammatory eye disease that destroys the uvea, or middle layer of the eye. The disease is linked to the autoimmune system and is often referred to as “arthritis of the eyes.” Currently, uveitis is the third leading cause of blindness in the United States. Unfortunately, the cause is unknown and there is no cure.

To create awareness of the disease, French and fellow band members will be hosting a benefit concert at the Best Buy Theatre in New York City on April 29 in addition to a special silent auction to raise funds for The Ocular Immunology and Uveitis Foundation in Cambridge, Massachusetts.

“The part that gets me, it’s not colon cancer, it’s not heart disease, it’s not  breast cancer, it’s not one of these big time diseases that people are throwing tons of money to. (Uveitis) is a relatively small disease and it behooves us to bring as much awareness as possible to this entire process.”

French said he decided to raise money for the foundation because Dr. Stephen Foster founded it and he has treated Samantha for years. “Dr. Foster is the leading researcher in inflammatory eye diseases,” he said, adding, “Out of 30,000 ophthalmologists in the country, there’s only 100 that deal with uveitis. Out of those 100, three have research abilities—laboratories—and only one has a research hospital.”

It was a little more than three years ago when French decided to organize a fundraiser for the foundation and he knew he needed to come up with an idea that was original so that it would garner both media attention and public support.

Aside from proceeds from concert ticket sales, funds will also be raised through the auction of one-of-a-kind PinkBurst guitars and amps at Skinner Auctioneers Fine Musical Instruments Department on Sunday, May 1, in Boston, Massachusetts. Custom made guitars from Gibson, Fender, Paul Reed Smith, Epiphone, Gretsch, and Martin as well as custom amps from Marshall, Fender, Vox, Mesa, Orange, Hartke, and Diamond will all be up for auction.

“I got Gibson, Marshall, Fender, Martin, Vox, etc., etc. to all agree to do a project together and these companies don’t like each other,” French said of the competitive industry. “In this case, I am getting all these guitar companies to look like my Gibson, which has never been done before. They all made one-of-a-kind models, so if you’re a collector, you want it because it’s the custom shops of these companies that built it that makes it special.” Additionally, the amplifiers will all be covered with same type of cover, which is made by Tolex.

French said the entire project took a lot of work, but he is hopeful that everyone’s efforts will pay off. “There’s been too much goodwill; there’s too much heart behind it” for it not to be a success, he said.

Through publicizing the fundraiser, French also hopes to further awareness of uveitis and encourage the public to get regular eye examinations since early detection and treatment can save a person’s vision. “For me to bring awareness to uveitis means take your kid to a doctor. Chances are the kid will be totally normal. But if your kid has uveitis, I’ve saved your kid’s sight because you can at least get treatment,” he said.

In Samantha’s case, it was a doctor conducting a routine eye exam at her school who first noticed something wasn’t quite right and recommended she see a specialist. A family friend who is an ophthalmologist in New York soon confirmed she had uveitis.

“We never heard of it and, of course, he explained it. We went on the internet and researched it and found that it’s a relatively rare eye disease. However, it’s the leading cause of blindness among American girls,” French remarked.

After Samantha was diagnosed with uveitis, her parents took her to see Dr. Foster at the Massachusetts Eye Research and Surgery Institution (MERSI). “He gave us this grim diagnosis about Sam (and said she) could take these steroid eye drops to knock the inflammation out, but the steroids could also cause blindness due to cataracts. I think my wife and I at the time—Sam’s mom—were traumatized by this whole thing. We didn’t know what this was. How could this happen to our daughter?”

French said they thought and hoped the problem with Samantha’s eyes was just a temporary reaction to something she ate or a chemical or environmental substance in the air. “We couldn’t believe she had a real disease that couldn’t be easily treatable,” he said.

As part of Samantha’s treatment plan, Dr. Foster recommended she take systemic drugs, but her parents were reluctant due to the potential side effects, so she continued taking the eye drops for a year. “It’s not the best thing; drops have a lot of complications,” French admits.

Unfortunately, within the year Samantha remained undiagnosed, she suffered some irreversible damage, which is referred to as 'scarring' of the uvea. Those who get uveitis as children won’t see or feel it, which is why scarring may go undetected for awhile. As a result, one may slowly lose vision because the blood vessels behind the eye become inflamed and cut off the blood supply, which causes irreversible blindness. In adults, however, the symptoms are different. Their eyes hurt and may be bloodshot. Moreover, light may be irritating and vision can worsen very quickly.

Unfortunately, in Samantha’s case, the scarring in combination with the steroid drops she had to take resulted in cataracts, which can be removed when mature. Steroid drops can also lead to glaucoma when taken for long periods of time.

In addition to that, after a year or so of taking the drops, they stopped working for Samantha so they inquired about using systemic drugs, or immunosuppressant chemotherapy, which is a preferred alternative to steroid-only treatment. Dr. Foster suggested they start out with methotrexate, a drug used to treat cancer and autoimmune disorders. “It worked a little bit but not enough and eventually they moved to cyclosporine,” French said, noting that it is an immunosuppressant drug.   

Over the past 10 years, Samantha has been on five different cycles of chemo drugs. They all worked to varying degrees and required her to be monitored constantly for possible liver damage. One of these drugs called Remicade is an IV infusion. “It’s a pretty heavy chemotherapy drug,” French said. Not to mention, “they were charging our insurance company $19,700 per dose. That’s unbelievable, right? My daughter took 12 doses of that over the course of two years.”

Due to the nature of the drug, it was administered to Samantha over a five-hour period in a cancer ward of a hospital. Although the medicine controlled Samantha’s uveitis, it “suppressed her immune system so much she was getting sick all the time,” he said, adding that they had to wean her off of it.

After being taken off Remicade, “for about three or four months, she stayed clear. Then bang, it came back worse than ever,” French said. “They put her back on the drops to get some immediate relief because you’ve got to get rid of those cells.”

The next drug Samantha was put on is called CellCept. “CellCept is a heavy duty (drug to prevent) organ rejection that you give to people who’ve had organ replacements. They had her on CellCept for about two years and it took about a year and half for the CellCept to finally kick in and to take the cells out of her eyes, (but)…she continued to get really sick from constant colds and the flu.”

Because she was getting so sick, doctors prescribed Humira instead, which is a drug that gets injected. Since last August, Samantha has received the injection every two weeks just above her hip. Given by a doctor, it takes only about a minute to inject, but it stings for about 10 minutes afterwards, Samantha has found.

“Humira has appeared to be, at least for my daughter, kind of a magic bullet,” French claims. “It’s working for her, but it’s not without its complications. When she gets a cold, it’s worse than normal, but she’s gotten less colds and the Humira has completely stopped the cells in her eye.” If Samantha continues to do well, she will be weaned off Humira in August 2012. At that time, they will determine if her body has become able to fight off the inflammation in her eyes on its own.

As French will attest, the trial and error process that comes with finding the best medication regimen for patients with uveitis and other forms of arthritis can be trying, as French will attest. “There’s a delicate balancing act between medications, her being sick, her quality of life, (and) her vision that comes in on a daily basis, and your heart rises and falls and breaks with every doctor visit because you’re waiting to hear if her eyes are clear or not. (And) you’re hoping that she doesn’t get so sick (from the medication suppressing the immune system) that she doesn’t have to go to the hospital.”

On April 26, French will appear on Late Night with Jimmy Fallon, where he will speak more about the fundraiser and plans for Twisted Sister. “Twisted Sister is always doing things,” he said. “We are playing all over Europe this summer. We are re-releasing our entire catalog re-mastered and have a bunch of new DVDs coming out. We are going to have 11 pieces of product out in the marketplace this summer. CDs and DVDs of concerts and performances that are legendary to this history of the band, if you are a collector of Twisted Sister stuff.”

For more information on the fundraiser or to purchase tickets, visit www.pinkburstproject.org. To learn more about Twister Sister or to purchase their merchandise, visit www.twistedsister.com.