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A Message From Elizabeth Gold, Team Captain of Team Duke, 2014 PUW Top Rookie Team

April 5th, 2015 by Guest Blogger

How Team Duke’s Unity Walk experience unfolded resulting in them becoming our 2014 Top Rookie Team

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I discovered the 2014 Unity Walk while I was on maternity leave late last winter trying to juggle the high of having a healthy, new little boy and the low of watching my Dad in the throes of his fight with Parkinson’s. I was bouncing along that emotional spectrum one night researching ways to support both of my parents when I came across the website for the Unity Walk. I registered in the wee hours of the morning, created Team Duke in honor of my dad, and signed up to walk. It was a snap decision and I’m so glad that I did it.

I wasn’t sure what to expect since I had never directly solicited money through a walk or run. And I also wasn’t sure what to expect by so publicly acknowledging my dad’s illness. He was a private man, and while he certainly didn’t endeavor to hide his disease, he was the type of to deal with adversity privately rather than communally. I am cut from the same cloth, so it took me several days of writing and rewriting my solicitation email before I finally sent it off to my family and friends.

I set a goal of $5,000 which seemed too high, but why not? And then people started responding and I reached my $5,000 goal within two weeks. It was amazing and inspiring to me. I think our family and friends were relieved to be able to support my dad – even just financially – because they were feeling as helpless as I was. And the donations all arrived with messages of support. I loved sharing them with my parents, and it made my dad feel like he wasn’t in this alone. I quickly increased my goal to $7,500 and then $10,000 as the donations continued to come in. A few weeks before the event, I was feeling comfortable and confident enough to use the Walk’s social media tools like the Facebook app. I happily was surprised to hear from old acquaintances and friends on Facebook who offered their support and donated to Team Duke as well. I am grateful and thankful that Team Duke ended up raising the most money of any rookie team. Selfishly it is a source of pride since this was so personal, but the truth is that the funds made a tangible difference last year in helping to raise money for research. This is a terrible disease and we need to find a cure.

As much as I was dreading the fundraising aspect of the Walk, it turned out to be an uplifting experience for me and my family. It is easy to ask for money for Parkinson’s because I’ve had a front row seat to its impact on a loved one. And because 100% of the proceeds raised by the Unity Walk go to research, it is an even easier ask. You just have to send that first email!

The Unity Walk is a joyous and vibrant event. And everyone who attends understands immediately that this is a community of patients and caretakers, family and friends who are all in this together. It is such an uplifting morning and you can’t help but leave Central Park feeling like the glass is half full. Full of life and living.

Good luck to everyone. Team Duke looks forward to the honor of leading off this year’s walk on April 25th.

Elizabeth Gold
Team Captain, Team Duke

New York State of Mind

March 30th, 2015 by Guest Blogger

I have the pleasure of opening the mail each day – and this time of year it is truly a pleasure to see all those checks arriving on a daily basis! One of our walkers, Doug Nemeth does an active mail campaign in addition to soliciting online donations and his donations are coming in strong. You can only imagine my surprise when I learned that Doug isn’t able to attend the Walk this year. It’s for a great reason – his son is receiving his doctorate in pharmacology. Doug “gets” the Walk. While he loves the experience of participating each year, he understands that at the end of the day, you don’t have to physically be at the Walk to raise funds for research and his donors understand that as well. Doug will end up raising as much this year as he has in the past when he’s walked in Central Park.

Life happens and things come up that may keep you from attending the Walk one year. We hope you will take Doug’s lead and continue to fundraise. This is one instance that you don’t have to be in it, to win it. Just like the lyrics to Billy Joel’s song, Doug is in a “New York State of Mind.”

Read on to hear from Doug Nemeth of team Livin’ La Levodopa directly …

Doug-Nemeth-for-blog

I was diagnosed 10 years ago with Parkinson’s disease. At the time I had no idea what Parkinson’s disease would do to my life. I feel that the quality of my life is better now than it was 10 years ago! This has a lot to do with my wife, family and friends. Much of this is due to the hard work of researchers funded by the Unity Walk.

Many of the friends we’ve made these last 10 years have been through the Parkinson’s family. I say family because we feel like brothers and sisters. We have made many friends through our support group.

Through this support group I learned of the Parkinson’s Unity Walk in New York City’s Central Park. Though all of us share some symptoms of the disease and not others, we all share one common desire – to beat Parkinson’s disease. By supporting the Unity Walk we are putting 100% of our donations into research that gives us and our children the chance at a life without Parkinson’s disease. I have been attending the Parkinson’s Unity Walk since 2009. We have a hard-working, proud, and loving team called “Livin’ La Levodopa.” It has been rewarding beyond what I ever imagined. Thousands of people coming together with love in their hearts for all the people around them and/or loved ones lost to this disease. We are driven to do all we can to beat PD and that is why I participate in the Unity Walk.

This year I’m the proud father of a son who is graduating from University of Pittsburgh with a Doctor of Pharmacy. Who knows? Maybe he will be the one who finds the cure. Unfortunately, the graduation is the same day as the Unity Walk in New York City. My priorities are in order and I will enjoy the entire weekend with my son at graduation. A big part of my heart will be with everyone in New York City that day.

That has not kept us from fundraising even though we won’t physically be at the Walk. So far, we’ve raised close to $4500 and we’re still going strong with close to four weeks left until the Walk. After all, it’s not about the physical walk. It’s about raising awareness, demonstrating support, and raising funds for research. The fundraising has gone well again this year. We are blessed to have many people who care so much and give of their time and resources. My wife and I have raised over $34,000 since 2009 for the Parkinson’s Unity Walk. My team,”Livin’ La Levodopa” has raised over $157,000 since its inception.

We are making a difference. Many thanks to all who have contributed. We could not do it without you.

That is why I am in a “New York state of mind.”

Doug Nemeth
“Livin’ La Levodopa”

Three Steps to Increase Your Success as a Fundraiser for the Parkinson’s Unity Walk

March 25th, 2015 by Katherine Savillo, Manager, Events
MobileApps

The “Unity Walk” Mobile App is now available via the App Store and Google Play Store. It’s one of three new tools that 2015 Unity Walk participants can use to fundraise for Parkinson’s disease research.

Thank you for joining the Unity Walk to help raise funds and awareness!  Every donation raised goes to research funded by seven major organizations, donations that provide dedicated researchers – opportunities to find a cure.  This is why we want to make fundraising as easy as possible for our registered walkers.

From talking with our top team captains and walkers, we’ve learned that successful fundraisers send out regular donation requests and reminders.  We are always searching for ways to make asking for support easier for participants and we can now announce three new tools that will help our registered walkers to fundraise!  They are a mobile application, Facebook application, and an email signature …

We are excited because in addition to sending individual emails to family and friends to ask for support, we now have these new tools for our participants!  So if you’re registered for the Parkinson’s Unity Walk, take these three steps to increase your success as you fundraise for Parkinson’s disease research:

Step 1:                        Fundraise on the go using the mobile app

For fundraisers who are always on their phone or tablet, the Unity Walk mobile app is just for you!  All from the palm of your hand you can manage and share your Unity Walk experience from your iPhone and Android devices.  You can use the app to personalize your participant page—this means updating your photo and story just got so much easier; you can upload a photo from your device!  You can connect with family and friends through social media, emails and text directly from the app.  The app also makes it easy to keep current with Walk news, giving you access to our Twitter and Facebook updates.

Participants can download the app by searching for “Unity Walk” on the App Store and Google Play Store.

Step 2:                        Expand your reach via the Facebook app

Our top fundraisers have reached their fundraising goal by asking people beyond their family and friends.  They search deep within their network and ask who else can help me with my fundraising efforts?  Because every 9 minutes someone is diagnosed with Parkinson’s disease, there’s a chance that you may know someone who may know someone who has been affected by Parkinson’s.  This is why using the Parkinson’s Unity Walk Facebook App is effective because it lets you expand your reach to your friends on Facebook—the contacts you may not have updated email addresses for!

Much can be done with the Facebook app including setting your profile and cover photos.  You can schedule posts, track your progress, countdown to Walk Day, and set (and forget it!) automated newsfeed updates when you reach important milestones throughout your fundraising.

Step 3:                        Show your commitment with the email badge

Successful fundraisers find unique ways to raise awareness and show their commitment.  This is why we’ve added the Parkinson’s Unity Walk Email Signature to help you show your connection to the Unity Walk each time you send an email.

We recommend using the email signature because once installed, it lives on the bottom of each of your emails and hence a low maintenance fundraising tool.  The signature consists of a graphic that automatically updates with your fundraising progress and links back to your participant webpage!  It is supported on multiple web and desktop email clients including Gmail, Outlook, Mac Mail, Hotmail, and AOL Mail.

Because every penny we raise together goes to critical research, we hope you maximize your fundraising efforts by taking 1 … 2 … all 3 steps into your fundraising for the Parkinson’s Unity Walk.  Whichever tools you choose to download, they will surely increase your success as a fundraiser—all of our apps and email signature link back to your participant webpage which is where your friends and family can easily make their contribution and/or join you—one significant reason why these apps will make fundraising so much easier for you.

Go ahead and give them a try!  All of these new tools can be downloaded by logging into your participant headquarters.

If you need help talking through additional ideas about how you can help to raise awareness and funds, please let us know we’re here to help you!

LSVT BIG – A Personal Experience

March 23rd, 2015 by Guest Blogger

I recently spoke to Jenny Erasmus, one of our walkers whose mom is living with Parkinson’s disease. She told me that her mom was doing incredibly well after participating in what she thought was a research project about gait and balance. I was intrigued so I called Jenny’s mom, Doreen to find out more about this research. It turns out it wasn’t research at all but LSVT BIG, a program that has proven to be helpful for those living with PD. Doreen learned about LSVT BIG at the Unity Walk, an example of the resources that are available at the Walk.

Read on to learn about Doreen’s experience with LSVT BIG …

DoreenErasmus-blog-photo

Since being diagnosed with Parkinson’s there are several changes I have been forced to make in my daily life in order to cope with effects of this disease. The best decision I made was to participate in LSVT BIG, a program developed to specifically address the movement impairments for Parkinson’s patients.

LSVT BIG first caught my attention when I stopped by their booth at the Parkinson’s Unity walk in 2013. I spoke with a representative, gathered up pamphlets, and decided this was something that would be very beneficial to me. Unfortunately, the motivation to commit faded after the walk. Last year my neurologist reminded me of the program and suggested I give it a try. I resorted to my endless list of excuses – it was too far to drive, gas was too expensive, four days a week for six weeks was too much of a commitment, my dog would miss me…

Then one day something made me finally pick up the phone and call the Nayden Rehabilitation Clinic in Storrs, CT where LSVT was offered. I was invited to attend an informational session to learn more about the program and how it works. I attended the session and left knowing this was something I had to pursue. No more lame excuses!

After my first day, I knew the impact this would have on me. One of the best things about this program was working one-on-one with a trained LSVT therapist. I always felt somewhat intimidated and self-conscious joining exercise programs because sometimes I was the only Parkinson’s patient. I had a tendency for moving in the wrong direction and knocking people over. With LSVT, I didn’t have to worry about that. I was able to work with an amazingly wonderful physical therapist, Christina Colon-Somenza, who immediately made me feel comfortable. She motivated me and changed not only the way I move, but also the way I think about PD. The program is so simple – a combination of seven individual exercises and walking – yet it is so effective. The program also focuses on improving daily tasks like taking money out of my wallet and sliding into a booth at a restaurant. I was shown new techniques to accomplish these things much easier.

Ultimately, LSVT changes the way you think about moving. The focus is to take big steps, look up, and stand straight which are things my body no longer does naturally. LSVT showed me there is a way to change this. After four weeks in the program I watched myself walk down a corridor at the clinic. I saw someone in the mirror I hadn’t seen in a very long time. The woman I saw was walking straight and tall. She looked, dare I say, normal.

At my next follow-up appointment with my neurologist after I had completed LSVT, when it came time for her to observe my movement, I told her she better sit down because she won’t believe what she’s about to see. She watched me walk up and down the hall and when I finished she simply said, “Amazing.”

It has been months since I completed this program and I can still hear Christina’s voice in my head every day telling me to take big steps, look up, shoulders back! Instead of becoming frustrated and having to ask for help all the time, I can now accomplish much more by myself. For those of you out there reading this not sure if LSVT could benefit you, I say this: Get off your couch, stop making excuses (gas is cheap these days!), and find a LSVT therapist near you!  You have nothing to lose and oh so much to gain.

Doreen Erasmus
Deen’s Day Trippers

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In speaking with Dr. Cynthia Fox, co-founder of LSVT, she provided the following list of questions she suggests you ask when interviewing a clinician for LSVT BIG or LSVT LOUD:

  • How many LSVT LOUD/LSVT BIG clients have you treated?
  • What are your typical outcomes?
  • Do you have a follow-up/maintenance plan for your clients?
  • Is your LSVT LOUD/LSVT BIG Certification current?
  • Do you deliver the gold standard dosage of LSVT LOUD/LSVT BIG?  (4 days a week for 4 weeks, individual 60 minute sessions, with daily homework and carryover assignments)

For more information on LSVT Global, call 1-888-438-5788 or visit their website www.lsvtglobal.com.

Lights! Camera! Action!

February 16th, 2015 by Helaine Isaacs, Event Director

PCL1_TeamMcMossBLOG
The premiere episode of Parkinson’s CHAMP Live! on “PUW TV” was posted on our website in February and featured Team McMoss. It’s been five years since the Parkinson’s Unity Walk started featuring a Parkinson’s CHAMP each month on our website and we’ve decided it’s time to go “live.” Our walkers will continue to tell their stories but now you’ll actually get to hear their voices  out loud, rather than reading what they have to say.

We hope that listening to other walkers will remind you that you are not alone and there is an entire community supporting you in your fight against PD.

Our Parkinson’s CHAMPs represent a cross section of the Unity Walk. Some are new to the Walk; others have participated over the years. What they share is an appreciation of the sense of community that is created when thousands of people gather all committed to the same goal – finding new therapies and hopefully, one day, a cure for Parkinson’s disease.