Priepke Family Leads

Fund-Raising Drive For Sturge-Weber Research

By Kaaren Valenta

Donations are piling up in Peter and Karla Priepke’s garage as the Sandy Hook couple and their son, John, 22, get ready for a July 28-29 tag sale to support the Sturge-Weber Foundation.

The family recently returned from the foundation’s international conference in New Jersey, full of excitement about recent developments in medical research and determined to raise money to help find the cause and cure for “orphan disease.” Fewer than 1,000 babies a year are born with Sturge-Weber, a syndrome that usually includes a port wine stain birthmark on the face, typically involving an upper eyelid and the forehead. Glaucoma is a frequent complication; some children have neurological abnormalities and developmental delay of motor and cognitive skills, some suffer seizures and even  strokes.

“We are excited about the developments in gene research – we hope it will lead to answers for us,” Mrs Priepke said. “Sturge-Weber families are donating tissue to be looked at. It probably won’t help John but if I could save even one parent the sadness of having to go through some of these things with Sturge-Weber, it is worth it.”

“It takes money and awareness to get this research. If we get the awareness, we will get the money,” she said.

A syndrome like Sturge-Weber is especially difficult for young persons, many of whom have endured stares and cruel remarks by strangers.

“The conference was good for the young adults,” Mrs Priepke said. “Quite a few of them attended. They were able to share with others who have the same condition and many of the same experiences.”

At the conference the Priepkes attended lectures on epilepsy, neuropathology, ophthalmology, psychosocial implications, genetics and laser treatment. The conference also had available for distribution the first medical text in over 40 years on Sturge-Weber syndrome.

Dr John Bodensteiner and Dr Venita Jay of Toronto’s Hospital for Sick Children presented reports from the recently held National Institutes of Health Consensus Conference on Sturge-Weber syndrome. The landmark conference is expected to generate new research into the cause of the proliferation of blood vessels which comprise a port wine stain.

Karl Plate, MD, a world-renowned neuropathologist from Erlangen, Germany, lectured on the factors involved in angiogenesis during development of the fetus. “Understanding the angiogenesis process in the syndrome is crucial to unlocking the key to Sturge-Weber syndrome,” Dr Plate told the Priepkes and others attending the conference.

“Sturge-Weber is not well known,” Mrs Priepke said. “Fifty percent of the doctors in the medical community have no idea what it is. Parents frequently have to go so far for treatment.”

While many Sturge-Weber patients will require lifetime supervision and support, others are able to go to college, have careers and get married.

“Many parents have to financially plan differently when they have a child with Sturge-Weber,” Mrs Priepke said. “We have to think of what will happen to the child when we are gone. Some will need lifetime supervision. Some can’t drive if they have glaucoma or seizures.”

The tag sale, which will include everything from antiques to new towels, linens and rugs, will be combined with the third annual softball tournament set for August 5-6 at Young’s Field in New Milford to raise money for Sturge-Weber research and family support services.

“We’re still looking for teams and sponsors,” Mrs Priepke said. “Anyone who is interested in playing or helping in any way can call me at 426-8811 or Carol Shaw in New Milford at 860/354-0568.”

The wishing well at Stew Leonard’s in Brookfield will be dedicated to Sturge-Weber during the last week of July. In October the Priepkes are hosting a picnic for Sturge-Weber families from throughout New England and the East Coast.  They also are planning a nationwide Jeans for Hope fundraiser next year in May. The first Jeans for Hope fundraiser, held last May 17, was supported locally by such companies as Mott, where Peter Priepke works as a senior food scientist, and  Shine Pharmaceutical.

The tag sale will be held from 8 am to 4 pm on July 28-29 at 1 Timbermill Road (the corner of Timbermill and Riverside Road in Sandy Hook). The Brain and Tissue Bank at the University of Baltimore can be reached at 800/847-1539. The Sturge-Weber Foundation, a non-profit organization, can be reached at 800/627-5482 and has a website at http:www.sturge-weber.com.

The foundation is looking for corporate donations of a plain paper fax machine with program memory, a four-door vertical file, two four-line telephones, a Powerpoint computer-compatible projection machine, two secretarial desks and computer stations, a copier with reduction and enlargement, a coalating stapler compatible with computer, new research panels for conference display, a portable printer for a laptop computer, computer software, a computer monitor, a laptop and printer, and funds to underwrite office relocation and rent increase for one year. Donations are tax deductible.