Where your Concert for a Cure donations go

It's a warm summer day, perfect for an outdoor party and music especially one that raises funds for a worthy cause.

You stop at the beer counter, buy some food, bid on some silent auction items and listen to music. You feel good because you've done your part by attending the Concert for a Cure fundraiser for the Paul Ruby Foundation for Parkinson's Research.

You talk to Paul Ruby, the general manager of the Herrington Inn in Geneva, and listen to him tell about how he has coped with Parkinson's disease, a degenerative disorder of the central nervous system, for the past four years. You walk away feeling pretty good, mainly because Paul seems to be doing OK, and he has a positive outlook for a future cure.

You don't think much about where the dollars you just spent on food and auction items will eventually end up. The last thing on your mind is which doctor will conduct research that unveils some clues to the mystery that is Parkinson's disease.

But that is always on the minds of Ruby and members of his foundation.

Where money goes

Unlike many charitable organizations in which money goes into a huge pool of donated funds to be spread around for general use related to a specific cause, those who work tirelessly to plan the annual Concert for a Cure for the Paul Ruby Foundation know exactly where, and to whom, the $200,000 that has been raised so far is going.

“The original purpose of the foundation was to allow us to operate a fundraiser in the proper way, so that donations could be tax deductible,” said the 47-year-old Ruby, who was diagnosed with Parkinson's at age 43. “Because of all of the people involved, it really became more than a fundraising mechanism and became a legitimate foundation with specific goals and objectives.”

After donating $70,000 to the Michael J. Fox Foundation in 2007 after the first Concert for a Cure because “we knew the money would be in good hands,” Ruby said, he began to learn more about the research taking place at the Parkinson's Disease and Movement Disorders Center at Northwestern Memorial Hospital in Chicago, where he was being treated by Dr. Aleksandar Videnovic.

“We got more involved with Northwestern because we started to think, what if we actually have a say in what we will do with the money?” Ruby said. “We approached Northwestern and it was a good fit for both sides.”

Julie Captain, the planned giving director for the Northwestern Memorial Foundation, became the liaison to the hospital for Ruby and his foundation.

“We knew they were active in private philanthropy, and it was decided his foundation could support the hospital's center,” Captain said. “It is up to the donor's discretion as to where the funds go, and it has become a more formalized procedure.”

That procedure includes Ruby and his foundation members sitting in on presentations from physicians who explain research projects and estimated budgets. The Ruby board then meets privately to narrow down choices. In the meantime, a medical review committee examines the same proposals to provide another viewpoint and more feedback for the Ruby Foundation to consider.

“It's definitely kind of overwhelming,” Ruby said of the process. “Everyone in the room is kind of looking at me, probably concerned about how the research affects me, but I am just the opposite in trying to look at it objectively.”

The Ruby Foundation ultimately decided to use its funds to support two research projects $75,000 to Videnovic's study of circadian rhythms, or sleep-wake cycles, in patients in the early stages of Parkinson's disease; and $25,000 to Dr. Darren Gitelman's pilot study of treatment drug effects on neurotransmitters in the brain.

Doctors thankful

“The support of the foundation is instrumental in allowing this research, which is a relatively novel outlook, as Parkinson's has not been studied from this perspective,” Videnovic said of his project. “We are trying to study how circadian rhythms function in Parkinson's disease and its impact on the motor symptoms of the disease.

“But it also looks at non-motor symptoms, such as depression, sleep disorders and high blood pressure,” Videnovic added.

Videnovic said the impact of sleep/wake cycles in those with moderate Parkinson's symptoms will help lead to studies of the effects on various hormones and genes.

“The hope is to eventually apply some circadian-based therapy to bring rhythms to where they normally should be, maybe with melatonin or light therapy, or understanding the proper body temperatures in exercise routines,” Videnovic said. “It would all be to get rhythms back to normal, thus addressing the symptoms and applying it to future progression.”

Dr. Gitelman said his research will focus on the loss of neurotransmitters in the brains of Parkinson's patients, and why only some transmitters respond to medications.

“It has been known for many years that Parkinson's disease is associated with the loss of certain dopamine producing cells in the brain,” Gitelman said. “However, it is not entirely clear why replacing the lost dopamine improves some, but not all of the neurological deficits in Parkinson's disease.

“The aim of this project is to use advanced magnetic resonance imaging techniques to look at how various networks, motor and cognitive, in the brain change in their activity before vs. after being given a dose of medication.

“By understanding which brain networks do or do not respond to dopaminergic medications, it is hoped this will lead to a better way to measure the effects of these drugs and to develop treatments that improve activity in the less responsive brain regions.”

Good choice

Ruby was pleased that the medical expert panel validated the board's choices, especially in picking Videnovic's research project on its merit, not because he is Ruby's doctor.

“Some traditional research is always making progress,” said Ruby, who is optimistic that a cure or an effective way to alleviate Parkinson's symptoms is closer each year. “But Dr. Videnovic always says there are ‘way-out theories' worth pursuing.

“I believe we chose a project that is showing some merit with its circadian rhythms aspect,” Ruby said. “We believe it is a novel approach and a research area that has not been looked at before, and we're glad we're helping to do something new.

“It provides encouragement for me and other Parkinson's disease patients,” Ruby added. “It is a smaller, more novel project with some proven results and, you never know it could be the one that leads to a cure.”

Even though she is considered a key person in organizing the foundation's concert fundraiser, Dawn Vogelsberg of Geneva is also actively involved in the research funding process in her role as executive director of the Paul Ruby Foundation.

“I think it is the most exciting part of it because it is such an action step toward finding a cure or alleviating symptoms,” Vogelsberg said. “The more research you learn about, the more hope there is.”

For his part, Ruby hopes the community continues to rally around his cause and help fund future research.

“The last thing I want anyone to think is that the Concert for a Cure event only benefits me personally by helping with my medical bills,” Ruby said. “None of the money is for me; it's for a bigger cause. I get the therapeutic benefits of the process at the concert, and in learning about the research and its potential for the future.”