Category Archives: Helping Hand Initiative

Letting His Lights Shine

Every year, in Plymouth, Minnesota, Brother Mike Justak (Ball State) invests more than 500 hours in programming, assembling, and testing a six-house, sequenced, 60-minute Christmas light show. Just as every shimmer of light in the show is perfectly timed to the music played over FM radio, those 500 hours are coordinated to match Mike’s peak hours of performance on his Parkinson’s meds.

By Merritt Onsa

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Considered “Young Onset,” Mike was diagnosed with Parkinson’s disease (PD) in 2004 at the age of 47. “By the time you’re diagnosed, up to 80% of your dopamine cells are already gone,” says Mike. He’s referring to the nerve cells in the brain that produce dopamine. Once there are visible symptoms, there is little hope of reversing the loss.

Those symptoms might include rigidity, slowing of movement, loss of balance, dysfunction in fine motor skills and speech, or—as the American public observed when Michael J. Fox revealed his diagnosis in 1999—tremors.

Justak has the least common form of PD, without tremors. “I’ve started to call it a ‘movement disorder.’ Most people with PD can’t get their bodies to stop moving. I can’t get my body to move,” he says. He specifically has trouble with repetitive motion on his right side. He’ll start to move his hand or foot normally, but without medication, his movements get smaller and smaller until they halt altogether.

That makes those 500 hours of multi-tasking as a computer programmer, electrical engineer, webmaster, DJ, and designer of a homegrown Christmas light show a bit more challenging than they would be for the ordinary person who doesn’t have training in any of those fields.

That’s right; Mike is an analyst by trade. He graduated with an accounting degree, but he says his Parkinson’s has helped him develop a creative side. What he knows about sequenced light shows he’s learned from others or by trial and error.

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The same goes for managing his meds around his activities, especially the detailed preparations for the show, which take nearly half the year. “I’m either on or off. When people see me they say, ‘You look great,’” says Mike. What those people don’t realize is the synchronization of his meds necessary to ensure he doesn’t “shut off” in the middle of a conversation, event, or light show.

PD Shimmers – You Will Be Amazed!

Mike’s annual Christmas light show, now in its fourth year, is called “PD Shimmers”—a tongue-in-cheek reference to the tremors commonly associated with the disease. Created by a man undeterred by Parkinson’s disease, Mike’s goal is to create awareness for Parkinson’s. His tagline for this year’s show: “You will be amazed!”

The amazing will begin on November 29th, when 58,000 lights will shimmer and dance, recognizing the number of PD diagnoses in 2013. Video and voiceovers will remind viewers of the purpose of the production. “My lights shimmer and dance to remind the world that 1.25 million Americans are waiting for a cure. We will shimmer as long as people tremor,” he says. As has become the tradition, Plymouth Mayor Kelli Slavik will flip the switch this year to commence season four of PD Shimmers.

New to the show in 2013 is “Sparkle.” Mike’s recent invention was inspired by a new feature at Disneyland’s “World of Color” show—lighted Mickey Mouse ears that glow green and red on cue with the music.

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Plymouth Mayor Kelli Slavik flipping the switch to commence Mike’s annual PD Shimmers lights show.

“Sparkle” will allow audience participation in PD Shimmers. To pull it off, Mike wired a four-foot transparent plastic hollow wand to a battery pack with strings of battery-operated lights stuffed inside. He’s built seven wands, each with a different color and timing to match the show, and all are designed to sit at the base of a car windshield.

“This is Minnesota in December. No one will be standing in front of the house to watch.” Instead, volunteers will approach each car asking if they want to participate in the show with a Sparkle wand on their windshield. “I’m hoping the kids will like it,” says Mike.

Caring for the Parkinson’s Community

Mike is also the founder of the Mike Justak Foundation for Parkinson’s Disease (MJFPD), created in 2009 to promote awareness and provide resources to the community about the disease.

To date, there is no cure for Parkinson’s. In fact, the “best” PD drug was invented 50 years ago, and it still has some of the same pitfalls it had then. Today, care for patients is focused on easing the symptoms, and one of the best ways to do that is through movement.

Enter the MJFPD’s Wii-Initiative, which gets PD patients moving again in the comfort of their own home using the popular Nintendo Wii Fit. “It’s ‘move it or lose it’ with Parkinson’s,” says Mike. His foundation provides funding for new or repurposed Wii kits to eligible applicants including, most recently, a 40-year-old single mom. She was the perfect candidate; as a result, she is now able to move and play with her two-year-old daughter.

Exercise is such a crucial aspect of a PD patient’s treatment because it can increase dopamine production and potentially slow the progression of the disease. In addition, exercise has been tremendously helpful in reducing depression symptoms, a common side effect of PD.

Helping People to Help Themselves

When Mike became acquainted with David Zid, creator of ‘Delay the Disease,’ a PD-specific exercise program, he invited David to a symposium in Plymouth. During the symposium, David gave a quick lesson instructing PD patients how to rise from a chair unassisted.

As the lesson ended, Mike heard a woman in the back of the room saying, “It worked! I’m standing!” and saw her begin to cry. This was her first time to stand unassisted in six months. “My question of why I got Parkinson’s was answered that day. I am convinced I have PD to lead people to solutions to help themselves,” says Mike.

In September, Mike’s foundation was invited to participate in The Victory Summit® sponsored by the Davis Phinney Foundation for Parkinson’s, a charity named for the former professional cyclist and Olympic medalist who was diagnosed in 2000. The event is designed to help people living with Parkinson’s focus on improving their quality of life. As part of that mission, Mike donated a Wii to one lucky attendee who visited his booth during the Victory Summit and even got his picture taken with the famous cyclist.

Full of ideas for investing in the local Parkinson’s community, Mike is chartering two buses this year to take PD patients and caregivers out to see Christmas lights. One of the tours is designated for advanced patients who don’t often have the chance to get out socially.

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Exercise is a crucial aspect of a PD patient’s treatment because it can increase dopamine production and potentially slow the progression of the disease. Mike’s foundation provides funding for new or repurposed Wii kits to encourage and facilitate movement in PD patients.

Two other pet-projects include creating a depository for first-generation Wii systems after families decide to upgrade and a video project called the “Faces of Parkinson’s” designed to bring awareness to the fact that Parkinson’s is not just a disease of the elderly. The latter is an effort Mike hopes will influence federal funding. Compared to cancer or heart disease, funding for Parkinson’s research is lagging by thousands of dollars per incident. “I’m trying to put a face to Parkinson’s. The squeaky wheel gets the grease; people need to know it’s not just the elderly who are diagnosed with PD,” he says.

Passing Down His Legacy

Mike and his wife, Karen, have four kids including two Sigma Nu legacies, Ryan and Greg, who currently attend North Dakota State University. Mike didn’t know there was a Sigma Nu chapter on campus until his eldest, Ryan, came home and announced he was a Sigma Nu candidate. A few years later Greg joined the chapter; he currently lives in the chapter house and serves as Treasurer, the same position his father held in the Theta Nu Chapter at Ball State.

A philanthropist like his father, Ryan is currently philanthropy chairman for the chapter and, this year, he instituted their first-ever haunted house. With great media coverage and a line around the block to get in, the chapter raised $5,000 for the American Heart Association.

Mike is thrilled his sons decided to pursue membership in Sigma Nu. “It helps you grow and gives you opportunities. Without a doubt, it was a valuable experience; I think it helps me to this day,” says Mike.

Though it’s been decades since his college days, one of his chapter brothers was recently reminiscing about a Halloween party in which Mike dressed up as a Christmas tree. “I had an electric cord running down my pant leg with 10 feet of slack so I could plug into a wall. The brothers all sang ‘O Christmas Tree’ as I stood in the corner. It was a story I’d long forgotten, but here I am, 40 years later, running my own Christmas light show.”

Although the show itself means hundreds of hours of painstaking work, not to mention the sacrifice of time with his family during one of the most family-centered times of the year, Mike says it’s worth it. “I have found something I can be passionate about. By doing this, I hope to inspire people who have problems in their lives to look for ways to contribute and help pay it forward.”

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Rebuilding Moore

By the time footage of a horrific tornado reached the airwaves Brothers from three different chapters in Oklahoma were already leading the rebuilding effort in their communities.

By John Bauernfeind (Indiana)

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In the aftermath of the tornado that hit Moore, Okla., the city was a shell of its former self. Areas that the tornado rumbled through were flattened. The town was unrecognizable. There were no landmarks with which to judge one’s bearings in Moore. There were no trees either.

“It was horrific,” said Sam Denyer, 21. “It was a war zone. Worse than a war zone, actually. I can’t explain how badly destroyed and mangled it was.”

After several weeks, the national media will have wrapped up its coverage of the disaster. Anytime a national tragedy or environmental crisis occurs, the media is all over it; current events are new and interesting, even sexy. But they die down, and what’s left at places like Moore, Okla., are people who genuinely care, for whatever reason or motive, about the wellbeing of the city and of the people who occupy it. People like Dylan Droege, who made the trip from his hometown of Longview, Texas, to Moore two times. There and back, it’s a twelve-hour trip.

“We immediately sent $2,000 to a Catholic charity up in Moore that went directly to the victims,” Droege said. “I’ve been there twice. We’ve been helping repainting and rebuilding fences. It was just crazy to see something do that much damage in such a short amount of time.”

Droege, only nineteen years old and a sophomore, is already the Lieutenant Commander of the Delta Epsilon Colony at University of Oklahoma. A native Texan and pre-dentistry major at OU, Droege has, come to love his adopted state during the rebuilding process.

“Personally, it makes me have more pride,” he said. “It didn’t matter that I didn’t grow up there. I absolutely love everything about Oklahoma.”

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Chapters in Oklahoma (Delta Epsilon, Epsilon Epsilon, and Mu Tau) reported receiving donations from various chapter and alumni across the nation, including schools in California, Georgia and Illinois. Pictured here are members of Epsilon Epsilon Chapter at Oklahoma State.

Zach Cissell is a twenty-two year old senior at the University of Central Oklahoma. He is studying industrial safety and is a member of the Mu Tau chapter of Sigma Nu. He is also from Moore, Okla., the town that was decimated this past May by a tornado that stretched over a mile wide. Cissell, who was at school at the time of the tornado, raced home to his parents and grandparents’ houses, where, unbeknown to him, one of them had already been destroyed.

“I headed down there when the storm was still hitting,” Cissell said. “It took me about an hour to hike in. Once I got there I went in to my grandparents’ house and tried to salvage anything I could. My grandparents had a pretty big house, and we tore it down last week.”

Cissell’s grandparents were not in the house at the time the tornado ran through. Cissell called his mother, who was home, and was relieved to learn the tornado missed her by about a mile. His father, who had been at work, and his brother, at graduation practice, were alright, too.

Colt Coldren, one of Cissell’s Mu Tau Chapter Brothers, has visited ground zero of the tornado’s destruction multiple times

“When it first hit, it was an absolute wasteland,” Coldren said. “It was definitely shell shock. I remember specifically a house that was demolished beyond recognition. When we went to clean it up, I realized that I was standing in what used to be someone’s kitchen, made into rubble.”

Coldren is a sophomore at Central Oklahoma. Last month he and several fraternity brothers went to Moore and actually knocked an entire condemned house down. Coldren says that his chapter has already completed over two hundred hours of community service, and estimates that they’ll be over five hundred at the end of summer.

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Brothers from Mu Tau Chapter (Central Oklahoma) volunteering in the clean-up effort in Moore, Okla.

“It’s been a marathon,” he said. “It’s going to take five years to put the neighborhood back together. We really appreciate everything that you guys do for us.”

Coldren is referencing the donations Mu Tau has received in the past several months. “A lot of man hours have been donated along with everything else we’ve received for the Save Moore Foundation.” Coldren said that Mu Tau has received donations from various fraternities and chapters across the nation, most recently from schools in California, Georgia and Illinois.

Coldren said that five to fifteen people from Mu Tau Chapter would go to Moore at a time to help out. In the wake of the tornado, they sent multiple teams of brothers every week to the town.

“For some of us being from that neighborhood, to see where they spent their childhood leveled and mashed,” he said. “It’s definitely done a huge part in bringing us together.”

The Epsilon Epsilon Chapter at Oklahoma State University has also taken part in the rebuilding of Moore. Chase Snodgrass, Epsilon Epsilon Commander, said that he and his chapter are in it for the long haul.

“Our chapter is committed to helping our fellow Oklahomans,” he said. “The rebuilding process will take years and we plan on being a part of it.”

Snodgrass is a senior at Oklahoma State. He’s majoring in marketing with a minor in human resource management, and plans on attending law school in the fall of 2014. Snodgrass said that, in the immediate aftermath of the tornado, the responses his chapter got were overwhelming.

“We received phone calls and emails for over a month, from brothers, both collegiate and alumni, wanting to know how they could help,” he said. “With their help we had car loads of needed supplies that have been used and since donated to Serve Moore. Members of our chapter and their families have continuously been helping victims in Moore. In addition, our chapter had over twenty brothers and a handful of prospective members attend a full day of service in Moore and had the opportunity to help out many different people.”

The aforementioned Denyer is also a member of Epsilon Epsilon Chapter. Denyer is a senior and Lieutenant Commander of his chapter. He emphasized how proud he is of his chapter and its efforts to help the people of Moore who were thrilled when Denyer and his brothers came to help.

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“When we went to clean it up, I realized that I was standing in what used to be someone’s kitchen, made into rubble.”

“I was really surprised,” he said. “But I think once we arrived, the trauma of the situation had blown over. Everyone was excited and grateful that we were there to help.”

One of the first people that Snodgrass and his brothers helped out was a widow and her infant. “The very first person we had the opportunity to help on the ground in Moore was a younger woman with a one-year old baby boy. Her husband, a former track star at Moore High School, had passed away just before the birth of their child. The woman had hung all of his track medals on the ceiling above the baby’s crib. The tornado had completely destroyed her house. As we tore the house apart, moving it piece by piece to the curb, she had only one request: to look for the medals as we moved the rubble. Amazingly, we not only tore the house down to its slab and moved it to piles along the curb, but we were able to find many of the medals, giving the woman and her child something to remember her husband by.”

Snodgrass estimates that Epsilon Epsilon has contributed over two hundred hours of community service towards the relief efforts in Moore. Still, the cleanup process has just begun.

“While much of the debris has been cleaned up along major highways, there is still much to be done,” Snodgrass said. “However, Oklahoma is not new to tragedy on this scale. Oklahomans always take care of their own.”

Cissell takes it a step further, comparing the destruction in his hometown to a war zone. “It’s still pretty level,” he said. “It’s kind of like a war zone still. You can definitely tell what was and what wasn’t affected by the tornado. It’s definitely getting better, but slowly.” Cissell remembers the moment he heard of the tornado. “I’d just gotten off work. My roommate had the TV on, and I saw Moore being shown on the station, debris clouds hitting the city. I called my mom and made sure she was okay. Then I told myself, ‘I’ve got to get down there.’”

Among the uncertainty he faced on his way to Moore in that moment, Cissel said the support from his Sigma Nu brothers was consistent. “I instantly saw it, because all of my fraternity brothers knew that I was from Moore,” he said. “I kept getting texts and calls from them, asking me to let them know if there was anything they could do for me. Because it is my hometown, seeing the destruction that took place where I grew up puts you in shock. Seeing the outpouring help from the chapter, it puts everything in perspective. It’s really what I saw come out, everything we’ve been taught about brotherhood.”

Droege, Coldren, Denyer and Snodgrass spoke of similar circumstances. Their brotherhoods were strengthened through their shared experiences helping the victims in Moore.

“I know guys who went to Moore day after day and who grew a summer bond with one another,” Droege said. “It’s definitely helped to build a stronger bond with one another, and it gave us a sense of community and responsibility. From a chapter standpoint, we’re still a colony, but we’re really proud to give back to the community in any way that we could.”

“Personally, it’s definitely an experience you can never have unless you’re there,” Coldren said. “Seeing all the affected people, and to see how proud Oklahomans are, it’s crazy. It’s unexplainable how proud you are to be a part of such a great State that helps each other out.”

“I was very proud of our guys, and very proud of the number of people who showed up to help out,” Denyer said. “I’m extremely proud of the way our group performed. We really worked to help out and make their lives better.”

“There is no greater feeling than helping those in need,” Snodgrass said. “At Epsilon Epsilon we strive to live our values and the tenants of Love, Honor and Truth.”

In Oklahoma, amidst the wreckage, heartthrob and despair, the tenants that every Sigma Nu decrees by were on full display.

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Chapters Send Support in Wake of Boston Marathon Tragedy

Chapters from across the country took to Twitter yesterday to send words of support and encouragement to all affected by the Boston Marathon attack. In the coming weeks we anticipate hearing inspiring stories of Brothers stepping up to serve and lend the helping hand to those in need, as they always do following tragedies like this one.

 

 

Countdown to Founders’ Month of Service…6

#6

Use your chapter’s operating budget. Chapters that are serious about philanthropy cover their own expenses.  If your chapter raises $1,000 in contributions but uses $600 to cover expenses, the juice probably wasn’t worth the squeeze.  There should be a line item in your chapter’s budget to cover the expenses of your philanthropy event.  This means that every dollar collected goes straight to the cause.  Letting donors know this will encourage them to be more generous.

Countdown to Founders’ Month of Service…7

#7

Setup a PayPal account so donors can contribute online. Now you can send the link via email and Facebook to thousands of potential donors–alumni, friends and family–with the click of a button.

Countdown to Founders’ Month of Service…8

#8

Get a credit card terminal. Fewer and fewer people are carrying cash or check books these days, so get with the program and procure a credit card terminal.  And if you’re really serious, talk with student account services on your campus.  Some will provide a machine allowing students to donate money from their meal plan.

Countdown to Founders’ Month of Service…9

#9

Ask people for donations. Sounds obvious, right?  Then why do so many philanthropy events consist of nothing more than chapter members sitting behind a card table with a change jar?  The most common reasons people don’t donate is because they were never asked or, believe it or not, because they were asked for something insignificant.  Ask donors for a specific amount and don’t insult them by asking for too little.

Potential donors could include alumni, brothers’ family members, other students and local vendors/businesses.  And donations need not only be monetary.  For example, ask a local grocery store to donate bottled water or ask local restaurants to provide gift cards as incentives.

Learn more here about how your chapter can participate in the Helping Hand Initiative.