Champions in Action

The Parkinson’s Disease Foundation (PDF) is pleased to highlight inspiring stories from our PDF Champions — individuals, families and organizations that have shown incredible dedication to Parkinson’s research, education and advocacy by making PDF their charity of choice. We applaud our featured Champions, and all others who signed up for the task in the last few months.

Actor Raises Funds and Awareness

After Larry Strauss, an actor living in Southern California, was diagnosed with Parkinson’s, he found auditions to be challenging.  It was difficult to hide his symptoms and to know when or how to tell a potential employer about his diagnosis.  So he performed outreach work about issues of employment and Parkinson’s that led to a series of articles in a national industry publication. 

He did not stop there and has since worked to publicize the cause amongst the casting community, his friends, family and neighbors.  After Larry finished up his latest feature role in the film White Knuckles in July 2008, he convinced the producers to stage a special early-release screening of the film and donated the proceeds from ticket sales to PDF.  He did the same for PDF in 2006, when he organized a dance event at a local night club and invited friends, family and colleagues.  Then this past April, when friends threw him a birthday party, he asked that his friends make donations to PDF in lieu of gifts.

These events raised a total of over $3,000 and this was certainly welcome.  But as Larry says, “Raising money is important, and we all have favorite hobbies or interests that can be turned into fundraising events.  But there are other ways to contribute.  The more awareness about Parkinson’s, the better.”

Personal Trainer “Pumps it up for PD”

Personal trainer Ann Savio-Affinito found her inspiration by bringing together her professional passion and her desire to fight PD.  Her motivation comes from the experience of her late father, Guy Savio, who battled with the disease.

Ann’s most in-demand class at Renaissance Club Sports in Walnut Creek, CA, has been body sculpting. So, with the support of her fitness club, she promoted a one-day class called “Pump it up for Parkinson’s” — from which proceeds have supported PDF’s programs.

She raised over $600 from her class.  Sadly, Ann’s father passed away in June, but not before he found out about her event.

As she said, “I wanted to raise awareness and I’m a fitness trainer by trade.  It is something I enjoy and I’m good at so why not use it to raise awareness?  You hear about cancer and heart disease, but not a lot about PD.  Helping to change that hit home for me.”

Secret Marathon for Mom

When Kate Jaggard called the Parkinson’s Disease Foundation (PDF) to discuss raising money by running a marathon in honor of her mother, PDF staff showed her how to create her own page on the PDF website (www.pdf.org) to raise awareness and funds for her project.

Kate immediately set up her page, but she and her fellow runner, her father Bruce, kept the website and their entire project a secret from her mother, Alice.  Kate’s mom was diagnosed with Parkinson’s disease around 2002.  Despite her diagnosis, Alice continued life as usual, never complaining to her family about how the disease impacted her life.

After several months of training and creative efforts by Kate and her Dad in publicizing their race, they told her mom about their plans.  Not only did they tell her about it; they also showed her by revealing their personalized webpages (they had two because of a friendly father/daughter fundraising competition).  On each of the pages, numerous friends and family had left touching comments about the role Kate’s mom plays in their lives — quotes like, “Kate, your mom is one of a kind!,” and, “I think the world of your mom!”  Alice was touched and overwhelmed by the outpouring of support for her family.

On November 2, 2008, Kate and her Dad ran the Raleigh City of Oaks Marathon in four hours and 11 minutes, while her mom cheered them on.  The pay-off, from the generosity of their family and friends, totaled $5,613 to support Parkinson’s research, education and advocacy.

Kate said of her experience, “I see how frustrating the symptoms of Parkinson’s can be and admire my mother’s strength and courage as she lives with this disease.  I wanted to show support for her, but I was never sure how.  PDF made it so simple to be able to combine my dad’s and my love for running with our love for my mom.”

The Second Annual Zwick Pro-Am

On August 13, 2008, family and friends of Lenny Zwick gathered at The Farms Country Club in Wallingford, CT, for the Second Annual Zwick Pro-Am, a golf tournament designed to raise funds for programs supported by the Parkinson’s Disease Foundation (PDF).

Attendees honored friend Lenny Zwick, who had passed away a month earlier.  Mr. Zwick, who lived with Parkinson’s disease (PD) for 25 years, had been a member of the club for over 30 years.  An avid golfer, he was active on the links until 2006 and maintained close friendships with club members and staff.  His battle with PD led one friend, golf pro Jim Hanlon, to organize the first Zwick Pro-Am in 2007.

This year’s event included 18 holes of golf as well as a pre-tournament luncheon, a silent auction and an awards dinner.  25 teams of five golfers competed throughout the day and gathered afterwards to celebrate and remember their friend.

The 2008 Zwick Pro-Am raised over $80,000 for PDF’s research, education and advocacy programs.  Mr. Zwick’s daughter Stacey, told PDF News & Review, “It was so fortunate that my father was able to see the first tournament a year ago, and so touching that the club will continue the event in his honor.  Not many of us get to leave a legacy like that.”

Chris: Amtrak Conductor-Turned-Designer Raises Funds for PDF

As an Amtrak conductor for 18 years, Chris Waugh met people from all walks of life.  Through one of these chance encounters, he became a unique kind of “PDF Champion:”  a fashion designer!

About two years ago, Chris met Tina Lutz, a regular passenger on the Amtrak route from Kingston, RI to New Haven, CT.   Over time, the two shared stories about their lives, careers and families — including Chris’s wife Cathy and their two children, and his father, who lives with Parkinson’s disease (PD).

They also chatted often about Tina’s fashion design company, Lutz & Patmos, and its seasonal guest designers — among them, Sofia Coppola, Liv Tyler and Julianne Moore.  Each guest designer created an item of clothing and designated a charity to receive a percentage of the proceeds from the sale of that item.

As Tina and Chris talked one day, Chris quipped half-jokingly, “If you’re looking for a guest designer — I’m here, ready, willing and able.”  Little did he know that Tina would take him seriously and would sign him up to be the next guest designer.

Over several train rides to New Haven, the two chatted about Chris’s ideas for a women’s sweater (developed with 13-year old daughter, Brooke, in mind).  As Chris described his thoughts, Tina would sketch them.  As the design neared completion, Chris told Tina that he wanted the charity portion of his sweater sales to be used to support the fight against Parkinson’s, in honor of his father. 

What started out as a casual conversation has now become a reality. Chris’ cashmere, hooded sweater is now available in stores nationwide, where $20 of each purchased item will go to support PDF’s mission of research, education and advocacy.

Chris found the entire process to be a wonderful experience for his whole family, including his father.  To order your sweater and support PDF, please visit, www.lutzandpatmos.com.

Karen and Brian: 13.1 Miles for Mom

As Karen and Brian Staron prepared to run their first half-marathon, they knew it would be a challenge. For Karen, however, who has watched her mom live with Parkinson’s disease (PD) for over 25 years, the training was “nothing compared to the challenges that my mom faces daily, and has faced almost my whole life.”

Karen’s mom, LaVerne, was diagnosed with Parkinson’s in 1981 at the age of 43, when Karen was only six years old. When the households of Karen and her mother merged three years ago, Karen experienced in greater depth the daily realities of PD, such as the complexity of managing medications.

This only further increased her admiration of her mother’s spirit. Karen and Brian knew that friends were developing a new local half-marathon — the Palos Bank Southwest Half Marathon — that would run through the nearby south side of Chicago.

When 2008 was announced as the year for its launch, Karen and Brian decided to combine their running goal with raising funds for a very personal cause — Parkinson’s— in honor of LaVerne.

By the time Karen and Brian completed the race on Sunday, May 4th, they had raised an impressive $2,626 for PDF’s research programs — more than double their original goal!

Maggie: Running for Bobby

A few months ago, Maggie Simpson wasn’t a runner, nor was she affiliated with PDF. However, she had a big heart, a history of “giving back,” and a stepfather, to whom she pointed as her inspiration.

By November 10, 2007, Maggie had completed her first road race, eight kilometers long (4.96 miles) and had raised more than $3,000 for PDF.

Maggie’s mother, Priscilla, has long been involved in philanthropic events for worthy causes such as AIDS and breast cancer. Maggie realized that she wanted to do the same for a cause much closer to her heart — Parkinson’s disease. Maggie’s stepfather Bobby has been living with PD for eight years.

Bobby’s courage in the face of PD inspired Maggie to get involved and to help find a cure. She chose the “NTELOS 8K,” a road race that travels the neighborhoods of Richmond , VA , as her fundraising vehicle. Then she hit the Internet for training tips, created a disciplined schedule, put on her shoes and began to run.

In addition to generating awareness and needed funds for PD, Maggie found herself continuing a family tradition of philanthropy and winning the enthusiastic support of her community.

James: Worn Out Sneakers

Running 26.2 miles is no small accomplishment, so you may think it ambitious of James Rolke, a longtime runner from Woburn , MA , to complete a marathon as a means of raising funds and awareness for PD.

In fact, James did not think one marathon was good enough. So, in October 2007, James set off on an ambitious “Worn out Sneakers” campaign: to run a marathon in each of the 50 states, at a rate of two or three each year, beginning with the 2007 Chicago Marathon. The goal of his multi-year campaign is to generate a stunning $250,000 for PDF.

From the Chicago Marathon, James raised a total of $5,450 – $1,000 of which he donated himself. He has promised to repeat this generous contribution for every race he runs.

James is touched by Parkinson’s through his girlfriend’s father. He has observed that while other diseases seem to be visible in the mainstream media, Parkinson’s is not as well represented. He wants to get the word out and plans to do so by drawing media attention to the “Worn out Sneakers” campaign during his future marathons.

Thank you to all of our PDF Champions for your spectacular commitment to PD research, education and advocacy!