Put the FUN in FUNdraiser

February 21st, 2014 by Helaine I., Event Director

(February 21, 2014) – I am always impressed with the positive energy behind the fundraisers created by our walkers and teams. In addition to the tried and true method of reaching out to friends and family for donations, many of our walkers decide to mobilize their supporters at an event that raises awareness and funds for research. We highlight these events on our Parkinson’s CHAMP in Action page, to acknowledge their efforts and in the hope that one of the ideas will inspire someone else to create a fundraiser of their own. Restaurant “give back” nights, bar crawls, pancake breakfasts, zumbathons, local 5Ks, bowl-a-thons, and fashion shows are just some examples of how Unity Walkers are raising funds for research. The Unity Walk is just over two months away. There’s still time to plan a fundraiser for this year.

Looking for inspiration? Look no further than Debbie Flamini’s Volley for a Cure held last night at the Hartford School in Mount Laurel, NJ to raise funds for Debbie’s team, Debina’s Dream. I had the privilege of attending and experiencing first-hand, the support of the entire school for Debbie and this cause. I could barely find a parking space when I arrived which I took as a good sign about attendance. The spirit hit me the minute I walked in the door and was greeted with a warm welcome by several Hartford School students. Debbie was in the school lobby being interviewed by the local CBS cameraman and the story aired on the 11pm news. There was a carnival before the volleyball games and food was for sale before and after. Everything was donated so there were no expenses. It was the 5th grade vs. the 6th grade staff on the volleyball court. Both teams rocked but the 5th grade staff prevailed. The bleachers were filled and the teams were cheered on by parents, students and staff. The final tally isn’t in yet but so far, over $6,000 has been raised.
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The fundraiser created by Debbie and the Hartford School is just one example of the many amazing efforts put forth by our walkers and represents the best of the Unity Walk – Debbie’s resilience and positive attitude, her determination to fight this disease and work towards a cure, and the support of those who care about her. Never underestimate the power of community. It was palpable at last night’s event.

I wish I could personally attend each and every fundraiser held on behalf of the Unity Walk but most are not in such close proximity to our office. Even without being there, I know that what these fundraisers all have in common is the sense of commitment and community that is created when people gather for this cause in support of a person they care about. To paraphrase the famous line from Kevin Costner’s movie, Field of Dreams, “Build it and they will come.” Create your fundraiser and you’ll be amazed at the outpouring of support you’ll receive.

Once you decide on your fundraiser, let us know the details and we will post the information on our community calendar and with your permission, on our social media sites. Once the event has passed, complete this form and send us photos and we’ll share your experience on our Parkinson’s CHAMP in Action page.

Have questions or need some guidance? We’re only a phone call and email away. We wish you every success with your fundraising!

Helaine Isaacs
PUW Event Director

A Message From Tricia Cole, Team Captain of the 2013 PUW Top Rookie Team

February 18th, 2014 by Guest Blogger

TeamColeBannerWebwithdate

I discovered the Unity Walk in 2012 when looking for a way to get involved in spreading awareness and fundraising for Parkinson’s research. Immediately I knew it was an event that I would love to participate in and I registered for the first time. I soon found, however, that actually reaching out to my friends, family, and coworkers to explain why this cause means so much to me was personal and harder to articulate than I expected. In 2012, I registered alone and didn’t raise any money. As soon as the event was over, I saw all of the pictures online and promised myself I would take the plunge the following year.

In 2013 I signed up again but this time I created a team. I was determined to tell my friends about the Walk and raise $5,000, which I felt was a lofty goal especially considering I had raised $0 the year before. I started by sending one email to my closest friends and another to my family. I felt very empowered by their responses. Some friends donated, some registered to walk, some did both, and some even started fundraising on their own for my team. Before I knew it, I was using the Team Captain Fundraising Guide, and the Social Media fundraising tools on the Unity Walk site to share our progress with all of my friends on Facebook/Twitter. I even mentioned the Walk at work and a colleague who I had never known was very invested in the cause wanted to participate and sent my team link around to a few of her friends.

A couple of weeks before the Walk when I realized that my family was flying up from Florida, we had over 30 walkers, we had raised almost $15,000… I figured that we should make it official with a team shirt. Key word being we, plural. I was completely humbled and overwhelmed by how many people were not only willing but eager to help, support, and contribute to our team. With all that support, we achieved the distinction of being the top Rookie team and will have the honor of leading off this year’s Walk. Here comes 2014 and our goal is to raise even more this year to support Parkinson’s disease research.

One of the new teams will be the top Rookie team for 2014 and will get to lead off the 2015 Walk. You never know – it might be you! I wish all team captains, especially the new ones, every success with your fundraising efforts.

Tricia Cole
Team Captain, Team Cole

Advocacy Through Parkinson’s Action Network

February 10th, 2014 by Guest Blogger

 

Joe #4Joe Narciso #2                   I am a 45 year old father of three. I have had Parkinson’s for over a decade and probably started seeing symptoms five or six years before that. Even after being diagnosed, I tried my best to stay in the closet. This was done more out of necessity than vanity. You see, I was, I am an actor.

I made my living as an actor for 16 years, and eight years after diagnosis. As I do not enjoy the same level of fame and celebrity as Michael J. Fox, I feared that once I was “out” my opportunities to work would be severely hindered. So, for the first few years I did very little to promote awareness and even less in terms of advocacy.

My wife, Charlene did a lot of research and we donated to various organizations, but we never went to anything or actively participated in any way. When we first heard of the Unity Walk, we loved the concept. One day, one event, to support all the major Parkinson’s foundations. Once at the Walk, we had a wonderful day. It was the first time I felt like I wasn’t alone in my battle. I wanted to do more. I wanted to participate in a meaningful way.

At the Walk we met representatives from many notable Parkinson’s organizations. All of them do important work. All have noble missions. Awareness. Patient support. Research. But one stood out, to me. They had a unique charter: Advocacy.

The Parkinson’s Action Network. PAN.

PAN’s primary mission since its founding in 1991 has been to provide an informed, organized, and effective voice in public policy issues affecting the search for a cure for Parkinson’s disease. Basically, what this means, is that PAN lobbies on behalf of the Parkinson’s disease community.

PAN allows patients, caregivers, doctors, researchers and others to become advocates. Advocates then descend on Capitol Hill and meet with members of Congress and Senators to secure funding, affect change, and put a face on this insidious disease.

It is quite humbling sitting with a United States Senator and telling them your personal story. There is also an incredible feeling of purpose, power and pride as well. I feel like I am doing something that I would not otherwise have an opportunity to do: speak face to face with the people who truly are decision makers. I know that what we do with PAN is important, tangible and real. And I know we are making a difference.

Today, I serve as an Assistant State Director of New Jersey for PAN. There are monthly tasks for all of the grassroots leaders to accomplish – from contacting our legislators with asks for specific budgetary and policy issues that affect the Parkinson’s community, to attending support groups to help keep them aware of PAN’s advocacy efforts, to staying involved in social media, and keeping up to date on the issues that are important to all of us.

I am proud and honored to be a small part of PAN. To get involved visit www.parkinsonsaction.org.

Joe Narciso
JOE TEAM!

Joe #3PAN Hill Day 2013 with Congressman Robert Andrews

Creative Ways to Fight Parkinson’s Disease

January 28th, 2014 by Our Team

Winter's soft lightBettina Chavanne has participated in the Unity Walk since 2007 and we enjoy seeing her photos on her blog. We know that photography brings her much pleasure in spite of some of the challenges associated with taking photos if you are living with Parkinson’s disease, and helps her relieve stress. We asked Bettina to share her experience and her photos. Click here if you’d like to see more of Bettina’s photos.
Helaine Isaacs
PUW Event Director

For many years, I imagined Parkinson’s as a thief, sneaking into my house and taking one more precious item every night. Eventually, I came to see the disease in a less sinister light, more as a sloppy roommate than a cat burglar. You remember the friend in college who would wear your clothes without asking?* The one who “borrowed” your favorite necklace and then “forgot” to give it back? That’s what Parkinson’s does – it borrows all the things I love and messes them up a little bit.

My creativity is my stress-reliever. Which is what made my right-side tremor a bitter pill to swallow. How was I supposed to write? Hold a camera? Play the piano? I realized I just had to wait for my time. I had to wait for those moments when Parkinson’s returned my stuff. Even if only for a moment.

ParisLouvre1Photography has proven to be the creative outlet over which I have the most control. The heavier my camera, the steadier my hand. (That’s also a great excuse to buy really big lenses.) I also developed a not-at-all patented maneuver where I swing my camera over my left shoulder and perch it there to stabilize it. In very wiggly moments, I use a tripod and a remote trigger. Looking at the world with an eye toward capturing it in a single image is a strangely calming pursuit. Taking pictures quiets me, quiets my body and my mind. I still love to sit at the piano and play my heart out, but when my forearm muscles get too tired from fighting the tremor and my notes get all muddy, I can still go take pictures.

Landscapes are my favorite to shoot, although architecture and machinery run a close second. No matter how many times you snap a picture of a particular lake or hill, it won’t ever look the same. I love the mutable quality of our natural surroundings. I love the vast and peaceful emptiness of certain landscapes. Abandoned buildings and machinery (bridges, rusted tractors, airplanes) are just as magical for me – all rusted edges and unusual, imperfect shapes. I get lost when I’m taking pictures, which means I get to forget for a while about how I’m feeling physically.

Manassas Air ShowParkinson’s will continue to borrow parts of me without asking permission, but I will continue to keep the best parts for myself.

For those of you fellow Parkinson’s folks interested in pursuing photography as a hobby, a few words of advice: 1. Make sure all of your lenses are fast (f2.8 or f1.4) and coded IS, for “image stabilizing.” 2. Shooting pictures with your iPhone is an exercise in futility. Unless you manage to master the “image burst” function, which lets you fire off dozens of shots at once.  3. Auto-focus is your friend.

*An important caveat to this blog: My college roommate is a delightful woman and a very close friend. And she never borrowed anything without asking (particularly since she and I had such different taste in clothes that she would never have been caught dead in one of my argyle sweaters).

Bettina Chavanne
Team Captain, Team Bettina

The Difference Between WELLness and Illness is I and WE

January 13th, 2014 by Our Team

Nancy Mazonson, Director of Parkinson’s Family Support Program at Jewish Family & Children’s Services of Greater Boston shares her experience of working with people living with Parkinson’s disease on a daily basis and participating in the Parkinson’s Unity Walk.
Helaine Isaacs
Event Director

“The difference between Illness and WELLness is I and WE.”
Swami Satchidananda as quoted by Dr. Dean Ornish, TED Conference, 2006 and repeated by Bob Kuhn, Opening Ceremony, 2013 World Parkinson Congress

circle hand holdingI experience the sense of WELLness that can only come from WE – from joining with others – every single day in my role as Director of Parkinson’s Family Support at Jewish Family & Children’s Service of Greater Boston. By offering Parkinson’s Dance, Tremble Clef choral singing, support and education groups for people with Parkinson’s disease (PD), care partners and adult children as well as information and referral help, I have the privilege of making it possible for people with PD and their care partners to share and connect deeply with others. Our focus is on finding better ways to live well with PD while we wait for a cure. I know for sure that although the Parkinson’s journey can be very challenging, the power of community and the focus on the creative arts can be a healing gift. As one of our dancers said, “This is a caring community filled with camaraderie. Sharing dancing and sharing knowledge with others is good for the soul. It’s so much better than going it alone.”

 

Nancy Mazonson at 2013 PUW

On a sunny April day in 2013, the message of WE truly echoed through Central Park. As a first time walker in the 19th Annual Parkinson’s Unity Walk; as the daughter and niece of men who battled Parkinson’s; and as a professional in the PD world; the energy and connection of the day lifted my spirits. The huge crowd that gathered for the Walk wore everything from matching team t-shirts with a beloved grandpa’s hand print to wacky Viking regalia. Some walked confidently, while others walked haltingly and doggedly – and some rolled along with walkers, wheelchairs or strollers. It was a diverse community all focused on a shared effort to raise awareness and funds for PD research. For those few precious hours in New York, the Parkinson’s Unity Walk offered people who care about Parkinson’s the opportunity to experience the sense of WELLness that can only come from WE – from joining with others.

Please join me in April in Central Park. Hope to see you there!

Nancy Mazonson
Director of Parkinson’s Family Support
Jewish Family & Children’s Services of Greater Boston