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Archive for the ‘Guest Post’ Category

Brooklyn Parkinson Group

Friday, November 4th, 2016

Support groups have a strong presence at the Unity Walk and Brooklyn Parkinson Group (BPG) leads the way. They have grown in size, spirit and offerings and convey the support that is derived from their group. Not all support groups offer the same breadth of classes but the sense of connection and community is available in all of them. We’ve invited Leonore Gordon, Team Captain of the Brooklyn Parkinson Group’s team at the Walk to share her experience of BPG.
Helaine Isaacs
PUW Event Director

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The actual home of Brooklyn Parkinson’s Group (BPG) has been, since 2001, in downtown Brooklyn, in a building owned by the world-renowned dancer/choreographer Mark Morris, who heads his own dance company and public dance-school, located up the block from the famed Brooklyn Academy of Music. However, the whole notion of people with Parkinson’s benefitting from dance was the brain-child of Olie Westheimer, another Brooklyn resident who brought the idea to Mark Morris in 2001. Shortly thereafter,  Dance for PD® was launched as a non-profit collaboration between the Mark Morris Dance Group and BPG.

Mark Morris generously offered space for the Brooklyn Parkinson’s community to house our dance classes and, over time, our singing and movement classes, and monthly support groups for People with Parkinson’s (PWP) and their caregivers. Morris threw in the bonus of providing two of his top dancers as our dance teachers, David Leventhal and John Hegginbotham, joined for many years by Misty Owens, a gifted tap dancer and dance teacher. The icing on the cake was the added gift of a live pianist/composer of exceptional talent, William Wade, who played (and still plays) piano during the dance classes, who went on to teach and lead the PD singing group.

It wasn’t long before the popular Friday “Movement Lab” was added to the line-up, led by another celebrated BPG star, professional dancer and choreographer Pamela Quinn, who lives with PD herself. Quinn now also leads classes in Manhattan, and travels across the globe, teaching her techniques. (link to Pamelaquinn.net)

Birthed at the start of the 21st century, this new organism, “Brooklyn Parkinson’s Group” became a life-raft not only for me, but for dozens of others, (today numbering in the hundreds) some arriving from New Jersey, Long Island and the four other boroughs. I began to gratefully partake in the free weekly classes for PD folks and care-partners in dance, movement and singing in 2003, gradually rescheduling my hours as a family therapist and Resident Poet in the NYC public schools so I could attend. Participation slowly became a necessity, motivating me (and countless others) out of our houses and into the welcome company of peers struggling to adjust to living with Parkinson’s.

By 2008, my own progressing symptoms forced me (not unlike innumerable compatriots) to reluctantly retire from my two careers. By then, fortunately for me and about 15 others, a new partnership had recently emerged between BPG and Long Island University, initiated by a lawyer living with PD. LIU was just a few blocks away, and we jumped at the chance to attend twice-weekly aerobic and weight-training exercise classes.

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Suddenly, nearly every weekday, classes had become available, strengthening our bodies, our voices and our spirits. Of equal value, this daily-ness and continuity allowed many of us to become a community, and a family. Traveling between boroughs, we began to share meals, birthday celebrations, attend theater together, sign up for boat rides to see fall foliage, to visit one another in hospitals, and sadly, to jointly attend way too many funerals.

In 2011, one of our dance teachers, David Leventhal, once a lead dancer with a soaring career in the Mark Morris Dance Group, astonished us all by leaving the dance group in order to become director of “Dance for PD.” He began to train interested dancers to initiate new Dance for PD classes across the US and eventually, throughout the world.  His program and techniques are being taught in over 100 communities worldwide.

In 2013, after being filmed for a year by documentary filmmaker Dave Iverson (who also lives with Parkinson’s) and videographer Eddie Maritz, a beautiful hour-long film, “Capturing Grace”, was released. The film followed our dance community for over a year as we prepared for a final professional dance performance in 2012, and the film won Audience Favorite awards at film festivals across the US, eventually appearing on PBS.  “Capturing Grace” has inspired viewers with Parkinson’s world-wide to dance and to believe in their abilities to feel graceful again. capturinggracefilm.com

BPG and Mark Morris Dance Company are still partnering to offer dance and singing classes in all five boroughs, as well as in New Jersey. Thus explains the fierce loyalty of the Brooklyn Parkinson’s Group. At the end of the day, we all share a common bond of one extraordinary, creative, patient-based Parkinson’s community in the greater New York City area.

Leonore Gordon
Team Captain, Brooklyn Parkinson’s Group & Friends

 

Peaches and Parkinson’s – Working Together to Find a Cure

Tuesday, June 21st, 2016

Ontelaunee Orchards is among a growing list of companies that are actively supporting their employees in their effort to raise funds on behalf of the Unity Walk. Doug Nemeth is their Executive Vice President. He is living with Parkinson’s disease and is a longstanding participant in the Unity Walk. Together, they’ve created “Peaches for Parkinson’s.” Read below for more details about their fundraiser.

This event highlights that you can raise funds for the Unity Walk all year round and those efforts don’t need to be limited to the months of February through April.

We are grateful to Doug, Stacey and the owners of Ontelaunee Orchards for their support and wish them every success with their fundraiser. If you’re in their area on August 13th, please make sure to stop by.

Helaine Isaacs
PUW Event Director

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I mentioned in passing to Stacey Mullen that I would love to have a fundraiser of some kind in the orchard for the Parkinson’s Unity Walk but thought it might be a challenge with our time limitations at work.  At the time, I don’t recall Stacey reacting at all but she heard me all right. Over the winter, she was working on preparations for the 2016 season. She presented her plans for a walk at our orchards to the owner of the company and he was on board! Once we had his support, we started getting excited about the possibilities. I have spent 37 years working for Ontelaunee Orchards and to be part of an event like this is exciting and humbling. I am so grateful. After eleven years of living with Parkinson’s disease, work is becoming more challenging every day. Happenings like this fill me with optimism and strength. The first blossoms opened for the 2016 peach crop in late March. I believe they intend to do their part and are anxious to start growing. Peaches and Parkinson’s has a ring to it. Don’t you agree?

Doug Nemeth
Team Member, Team “Livin’ La Levodopa”

Doug Nemeth was diagnosed with Parkinson’s disease eleven years ago and he’s been a longstanding member of the Parkinson’s Unity Walk’s Team “Livin’ La Levodopa.” Doug has been employed as Executive Vice President at Ontelaunee Orchards in Berks County, Pennsylvania for over 38 years. Doug’s fundraising on behalf of the Unity Walk has mostly involved his reaching out to family and friends. In conversation a few months ago, he mentioned that he would like to create a local fundraiser in our community. That got me thinking – why not create a fundraiser at our orchard? I approached the owner of the orchard and he was immediately on board. This was the beginning of Peaches and Parkinson’s!

Ontelaunee Orchards is one of the biggest and oldest orchards in Berks County, Pennsylvania.  In the early 1920’s the orchard was comprised of approximately 2,000 acres growing peaches, apples, and cherries.  Today, the orchard is slightly smaller but growing a variety of fruits for “Pick Your Own”; apples, peaches, cherries, strawberries, blueberries, raspberries, and pumpkins.  Today it’s a great place to come with the family and make memories while picking fresh local fruit.  We are located in Leesport, Pennsylvania and the scenery and views while picking is truly majestic!

During August, aka “prime peach time”, Ontelaunee Orchards holds its annual Peach Festival where we highlight our PF 007 Peaches.  These peaches are truly something! They are the biggest peaches you’ll ever see! Every year we have the world’s largest peach, but unfortunately we haven’t been able to successfully document it.  The peaches are about the size of a softball, some larger, some smaller.

This year Ontelaunee Orchards’ Peach Festival has decided to combine forces with the Parkinson’s Unity Walk.  On Saturday, August 13th, starting at 10:00 am, the Orchard will host a Country Road Walk through the orchards.  Participants in the walk will get a T-shirt, and a pre-paid bag to pick peaches along with their donation.  After the walk, let the festivities begin! Stay for some BBQ, shop at the local craft vendors and listen to some live music! We’ve also approached local companies in our community and several have already signed on to serve as a sponsor of this fundraising event.

Doug believes that resilience is one of the factors that contribute to living well with the disease and he continues to capably and confidently run our company. We are grateful for this opportunity to support Doug in his efforts to raise funds for Parkinson’s research.

Please join us on August 13th, to help find a cure for Parkinson’s with peaches!

Stacey Mullen
Retail Operations Manager
Ontelaunee Orchards

 

April Showers Bring May Flowers – Team Impax Got a Little Wet at the Unity Walk but It Was Worth It!

Wednesday, May 25th, 2016

The Parkinson’s Unity Walk is grateful to all of our sponsors who generously support the Walk. It is their sponsorship dollars that allow us to keep our commitment that 100% of every dollar raised by our walkers supports Parkinson’s research.

Impax is one of the corporate sponsors of the 2016 Unity Walk and they have taken their sponsorship model to new heights by creating a successful fundraising team that involved their employees, in addition to serving as the sponsor of the Team Photo booth at the Walk. Read about their “secret sauce” – all the ways they were proactive in encouraging their employees to get involved and providing fun incentives to make this happen. Their model is a testament to their corporate culture and their senior leadership teams’ commitment to this cause. We hope that other sponsors look to this as a model they may incorporate into their sponsorship of the Walk.

Helaine Isaacs
PUW Event Director

PUW-16-walk_GLO5346Team Impax
It may have rained in Central Park the day of the PUW, but that did not dampen the spirits of Team Impax. Impax is a specialty pharmaceutical company that is committed to making a difference in the communities where we live and work. Our senior leadership believes it is important to invest in responsible corporate citizenship and champion causes that align with business objectives.

Our company sponsored the PUW Team Photo Booth, one of the most popular attractions at the Walk.  Impax employees, family, and friends also did a phenomenal fundraising job, with 52 registered walkers raising a total of $12,508 for the cause! We did this a number of ways:

1. To launch our fundraising effort and get employees excited about participating, we hosted a kick off rally. With the help of the PUW staff, a Parkinson’s patient spoke to our employees about her diagnosis and what it is like to live with Parkinson’s disease. Our senior leadership also presented at the rally to reaffirm the company’s commitment. We also provided refreshments and prize drawings for attendees.

2.  An Event Committee of cross-functional team members was formed.  These committee members are volunteers who are passionate about doing for others and served as champions of the event throughout the organization.  Part of our “secret sauce” entailed:

o Having a team captain who is persistent and passionate about the cause and is senior enough in the organization to be able to work with the leadership team;

o Partnering with our Corporate Communications group to promote activities, provide regular fundraising updates, and engage employees;

o Forming an Executive Steering Committee to ensure we were complying with all corporate policies.  Their participation also served as an endorsement of the importance of the event;

o Setting a corporate financial goal is essential. It provides a valuable roadmap for knowing where you want to go and keeps everyone rowing in the same direction; and

o Having a CEO who supported our fundraising efforts by posing a challenge to employees that he would personally contribute $5,000 if we met our corporate goal and an additional $2,500 if we met our stretch goal. (The PUW is one of three Parkinson’s walks our Company is supporting so this challenge encompassed all three organizations).  So far, we have exceeded our corporate goal.

3. Establishing a budget to provide Team T-shirts and to offer fundraising incentives and drawings, including logo gear such as umbrellas for the event.

4.  Recognizing star fundraisers or those who have gone above and beyond in helping the cause.

5. Making the event day a family event – including offering roundtrip transportation and bringing team gear and snacks to the event.

6.  Sending out thank you letters to all of those that supported the event.

We are so proud of Team Impax.  Their efforts exemplify our core values and commitment to the communities where we live and work.

Robin Bartlett
Team Captain, Team Impax
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Team Impax check presentation to PUW

 

 

It Works to Fundraise at Work!

Wednesday, March 30th, 2016

I speak with our walkers every day and hear all the creative ways they are going about raising funds for Parkinson’s research. Most of our walkers reach out to their family and friends, download our Facebook app and some create fundraising events. Some have partnered with their places of business to raise funds in support of the Unity Walk. We are grateful for the generosity of so many of these companies. HomeServe USA is involving their employees to support Kristin Legenza, a longstanding participant in the Walk, in her effort to raise funds for PUW. Read Kristin’s guest blog post below.

Does your company provide an opportunity to support your fundraising efforts? Maybe they do and it’s something you haven’t explored up until now. This is the perfect time to look into these options. Are you already raising funds at work? Please let us know. We’d love to hear from you!

Helaine Isaacs
PUW Event Director

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This year marks Team Legenza’s 6th year participating in the Parkinson’s Unity Walk. I walk for two reasons – my Grandpa Jack and my Dad. Growing up, my Grandpa had Parkinson’s for many years and it eventually took his life. A few years before he passed, my Dad was diagnosed with this debilitating disease as well. My sisters and I knew we wanted to get involved but just didn’t know how. My sister found the Unity Walk online and we immediately started to participate in the Walk and raise funds to find a cure for Parkinson’s disease. It is an amazing family event that we are extremely lucky to be a part of. Every year we try and do more, and luckily I was able to fundraise through work.

I work for a company in Norwalk, CT called HomeServe USA. We often participate in what the office calls “Jeans Passes.” If you donate to the charity chosen by HR, you can wear jeans every day to the office for a certain amount of time. A few months ago, employees were invited to make a presentation to the executives about the charity of our choice and reasons why that charity should selected for this kind of fundraising opportunity. The executives then chose three charities that our employees would contribute to this year. Pushing out of my comfort zone, I took a stand with a colleague of mine and told my peers why the Unity Walk is important to me and what a great experience it is. I spoke about an event where people come together to raise awareness and funds to cure a disease that impacts so many lives and families. I shared my experience of being at the Walk, and what it’s like to come together with a group of people who feel what I feel and who support one another as we stand up and fight.

Sixteen charities were presented and the Unity Walk was chosen as one of the top three. Donations are pouring in and I could not be more grateful to work for a company that supports me and the challenges I face outside of work. Not only are the people I work with donating to PUW, but my company, HomeServe USA, matches every donation dollar for dollar. In addition, HomeServe USA donated $1,000 to each charity that was presented as part of the contest.

People say that anyone can make a difference. After this experience I believe this to be true. Due to my company and my colleague’s generosity, I am part of an effort that is significantly increasing the amount of money raised for research and I couldn’t be more excited! I stepped outside of my comfort zone and shared with my colleagues a personal part of my life that I had previously kept very private. As hard as it was to do, I would do it all over again because I was able to make a difference. If we are willing to ask, people are eager to help do their part to find a cure for a disease that affects so many lives immensely, including my own.

Step out of your comfort zone, remind people of not only the hardships of the disease, but the benefits that come from gathering as a community at the Unity Walk. Fundraise any chance you get. I did and I’m proud of what we’ve accomplished. We each have the capacity to make a difference.

Kristin Legenza
Team Captain, Team Legenza

Rock Steady Boxing – One Walker’s Experience

Monday, March 7th, 2016

Double photo #1 Mike Achin RSB copy

I was excited to hear that Rock Steady Boxing (RSB) will receive the Bonander Award at the Unity Walk this year. Over the last two years, RSB has become a very important part of my life. It has taught me a lot about fighting Parkinson’s disease (pd) and not giving up. The more we learn about pd, the more we learn that staying active through exercise is important. A body in motion stays in motion! There are many ways to stay active such as running, swimming, walking, yoga, etc. Just pick what you like to do and start doing it!

Two years ago at the World Parkinson’s Congress in Montreal, my wife, daughter and I attended a working seminar called Rock Steady Boxing. I immediately fell in love with it. It’s everything I had been searching for. I was so excited about this program! That same year at the Unity Walk, more information was available about RSB. The problem was they were in Indiana and I live in Massachusetts. I was searching for answers and trying to figure out how I could bring RSB to my area. I was getting frustrated but then I heard some good news. There was a boxer in Rhode Island who was going to open up his gym to Rock Steady Boxing. My prayers had been answered!!! Rich Gingras, along with my fellow pd warrior Mike Quaglia, had gone to Indy to get trained and BINGO, RSB had a home in Pawtucket, RI. That’s how I got involved. Now let me explain why I love RSB.

The word “boxing” scares some people off. They think we get in the ring and pound each other. Even though that might be fun it’s not what happens. We do everything else a boxer would do such as, footwork (don’t shuffle!!), stretch those muscles (so we don’t become rigid and hunched forward), and yes, putting on the gloves and hitting the heavy bag, hand pads and our new toy, the dummy. Our classes include people living with pd at every range along the continuum of this disease, from those confined to wheelchairs to those just diagnosed, and everything in between. Men and women, ages 30 to 80, all come to battle pd and take charge of our lives.

Everyone who enters our gym immediately becomes part of our band of brothers and sisters. We laugh, cry, enjoy the good days and help each other through the hard days. We are ONE, fighting back at pd!! When you enter our gym it is time to get to work. Get your hands taped up and start walking or jogging. We need to get our hearts pumping. It is now proven that a strenuous exercise program can slow the progression of pd. I have seen it over and over again at RSB. After we warm up, we do a good 15 to 20 minutes of stretching. This is so important in fighting the stiffness that pd tries to give our body. We learn new ways to stretch. We can do these on our own at home too. Last but not least, get the gloves on!! “It’s just you and me now pd … and I feel good. I am going to knock you silly!!” Every participant in the class works with a partner and we encourage one another to work to the best of our ability. We are all learning to take control of our lives and knock the crap out of pd. It feels good to let loose and pound that bag. You are swinging with your left and right hand, your good side and your bad side. You are stretching to hit the bag. You are using footwork. All things that we pd fighters have trouble with from time to time. Magically, you are swinging, jabbing, punching, and moving those feet – not every time, some days are a struggle. You actually feel good and you forget you have pd!!!! It’s a strenuous workout and if you do it right, you feel great and you’re exhausted.

Mike #4
There is also a bonus I did not expect from RSB. You become close to your fellow boxers; they become like family. We all know how much pd has tried to take away from us. But now we fight back – we sweat, fall, work through the times the meds are not kicking in, laugh, and cry … don’t mess around with my new family!! I love them all. At the end of every class we gather with a chant – one, two, three … FAMILY!! Outside of the gym we do the best we can. This is my life. This is how I take charge. These are my people!! What are you waiting for? Find a RSB near you and change your life forever!!

Note: pd is purposely not capitalized. I refuse to give it any respect.

Mike Achin
Team Member, Team DominACHIN over PD