• Archives

  • Categories

  • pledge

  • signup

Archive for the ‘Raise awareness’ Category

PUW + Vacation = Raising Awareness

Monday, July 29th, 2013

PostcardForBlog_Helaine

Pack your bags! The Unity Walk is on the go; actually, it’s our walkers along with their t-shirts that are traveling. We know many of you have vacations planned and we would love to hear from you. When you pack for your trip, make sure to include a PUW or team t-shirt. Take a photo of you or someone on your trip in the t-shirt, email it to us with a caption of where it was taken, and we’ll post it on our website/social media sites. You’ll continue to raise awareness about Parkinson’s disease and the Unity Walk while you’re enjoying your vacation.

To get the ball rolling, this “postcard” is from me while on a weekend getaway to NYC. It is taken in Central Park at 6:00am. That is when the free ticket line starts to form for Shakespeare in the Park’s production of Love’s Labour’s Lost. We waited six hours for the tickets and it was well worth it. The production was amazing, we met a lot of great people while we were on line, and the view of Belvedere Castle behind the Delacorte Theater at sunset transports you far from NYC.

The last time I was in Central Park at that hour was for the Unity Walk. Actually, for the Walk we get there much earlier than 6:00am! It’s a lot lighter at that hour in the summer than it is in April.

We look forward to receiving your photos and hope you are all enjoying your summer!

Best,
Helaine Isaacs
PUW Event Director

Supporting the Unity Walk from a distance

Friday, May 3rd, 2013

kameronMTLindseyCroppedWEBThere are many supporters of the Parkinson’s Unity Walk who can’t join us in person for the Walk in Central Park but are there with us in spirit. Kameron Allison is one of those individuals. Kameron drove from Texas to Colorado to climb Mt. Lindsey with his friends this past Saturday in honor of his mother, Katrina Allison. Together, Katrina and Debbie Flamini make up the “Debina” of Debina’s Movers & Shakers. Kameron is pictured here with their blue team t-shirt. Reaching the summit takes determination and commitment – the very same qualities our walkers display as they strive to raise funds for a cure.

If you couldn’t join us in New York, let us know where were you as you supported the Walk. We’d love to hear from you!

Helaine Isaacs
PUW Event Director

 

The Edmond J. Safra Parkinson’s Wellness Program will provide Tai Chi and Nia Dance demonstrations at the Unity Walk this Saturday

Tuesday, April 23rd, 2013

As we thought about the type of entertainment we wanted to offer at the 2013 Unity Walk, we decided to select programs that highlight what people living with Parkinson’s disease are doing to stay healthy. That is what The Edmond J. Safra Parkinson’s Wellness Program is all about. I had to check it out myself so I spent an afternoon there. I participated in a Nia class, and met Amy Lemen, the Center Coordinator and the Nia and Tai Chai instructors. The workout kept me moving and the energy in the room moved me. We are delighted to have Amy Lemen introduce their program to you in anticipation of Saturday’s Walk.

Helaine Isaacs
PUW Event Director

nia group celebrateIt’s been an exciting time this spring as the NYULMC Parkinson and Movement Disorders Center has prepared for this year’s Unity Walk.  Participants in The Edmond J. Safra Parkinson’s Wellness Program – our community partnership with the JCC in Manhattan – have been abuzz with anticipation and their enthusiasm for the opportunity that the Walk provides has been inspiring.

The Edmond J. Safra Parkinson’s Wellness Program is honored to be featured at this year’s event.  We will be presenting demonstrations of several of our program’s popular fitness classes – Nia: Music and Movement and Tai Chi. We’re proud that many of our Program participants have graciously volunteered to show their strength and their moves with Nia instructor Caroline Kohles and Tai Chi instructor Lewis Paleais on the Bandshell stage immediately following the walk.

Additionally, our Bold Moves Walking Group has been training for the past ten weeks for Saturday’s Walk.  Bold Moves was designed specifically for people with Parkinson’s as a training program to build confidence and endurance in preparation for the Unity Walk.  Bold Moves team members have committed to supporting each other with weekly group walks through Central Park and the streets of the Upper West Side.  The Walking Group is up to 2 miles per walk – Coach and fitness trainer Jody McVey and team coordinator Cheshire Schanker have been with the group every step of the way.

Tai Chi walkingProgram participants will be joined by their biggest fans – staff members from the NYULMC Parkinson and Movement Disorders Center, the Rusk Institute for Rehabilitation Medicine and the JCC in Manhattan. In addition, students from the NYU School of Medicine and the NYU Silver School of Social Work, are looking forward to joining the walkers and supporting the festivities at this year’s event.

Since 2007, the Edmond J. Safra Parkinson’s Wellness Program has focused on dignity, hope and possibility while building a welcoming hub for the Parkinson’s community. Our goal with the program is to help keep those impacted by Parkinson’s active, educated and connected through opportunities to come together in fitness classes, support groups and educational and socialization events.  We’re proud of the work that our patients, caregivers and families do every single day to live well with PD.

Over the years, our program has been inspired by the Unity Walk and all that it does for the Parkinson’s community, as we work toward more options, better treatments and a cure.  We at the NYULMC Parkinson and Movement Disorders Center are grateful to the Unity Walk for what it gives to our patients, caregivers and families – a unique opportunity to come together as a community while working together toward the common goal of raising funds for Parkinson’s research.  It is an exhilarating example of unified grassroots action in an effort towards positive change.

New York City is alive with excitement for the Unity Walk and we’re thrilled to be a part of it.  Our Team will be proudly wearing purple Bold Moves t-shirts – look for us, we’d love to say hello. We look forward to seeing you very soon!

Amy C. Lemen, MA, MSW, LCSW
Center Coordinator and Clinical Neurology Social Worker
Supervisor, The Edmond J. Safra Parkinson’s Wellness Program
NYULMC Parkinson and Movement Disorders Center

PUW takes New York by storm (in January)! Thanks to May May.

Monday, January 14th, 2013
Capturewerawerawa

Together with a panel, May May Ali talks about many topics surrounding Parkinson’s on HuffPost Live

One more thing you can do … turn the lights on!

May May Ali and I just returned from a two day media tour in New York City. Our goal was to raise awareness about Parkinson’s disease and the Unity Walk NOW– with plenty of time for walkers to register and raise funds for research, and to reach people who don’t yet know about us. It was energizing and the pace was frenetic! We had a whirlwind schedule, meeting with reporters from FOX 5 Good Day New York, CBS WLNY The Couch, HuffPost Live, FOX News Radio, Better Show, CNN, multiple Sirius XM radio shows, and more. We had incredible opportunities to share our story!

It was a really great few days because we were able to raise awareness for our entire community and because the media was receptive to our passion and cause. They were touched by May May’s recollections about her father, Muhammad Ali, and inspired by her energy to encourage others to take action. May May compared being in the dark about the disease to walking through your house with the lights off. She encouraged all those living with Parkinson’s and their families to “turn on the lights” by educating themselves at the Walk.

When asked what her number one message was, she replied that it ” … would be to please educate yourself on Parkinson’s disease … Try not to be afraid. Don’t isolate yourself, and learn because with wisdom there’s power and empowerment. You will improve the quality of your life … Would you rather walk through your house in the dark trying to look for everything? Or do you want to turn the lights on? … Just get involve and be proactive and get active in the disease and don’t let it overtake you.”  -A Few Moments with May May Ali on FOX News Radio

To those who have not yet heard about our annual gathering in Central Park, our message was definitely clear– the Unity Walk is one thing you can do to take action. It empowers the Parkinson’s community by providing educational information and resources about the disease; creates inspiration by bringing the Parkinson’s community together; and 100% of donations go to much needed research.

We’ve already been invited back to a number of these news shows and several reporters have promised to personally support the Walk. (Especially when they heard it was only a 1.4 miles!) These new contacts have an extensive reach and will continue to help us spread the word about the Walk, raising more funds for research. Our hope is that we are able to reach so many others that will turn the lights on. The more people who join us in the fight against Parkinson’s disease, the closer we will get to our goal of finding the cause and cure for PD.

We had many favorite moments during our media tour, and just wanted to share with you one of them, which is this 25′ HuffPost interview. While we do start off by talking about the Walk, the rest is really informative on various Parkinson’s topics. Please do check it out as it is a great dialogue on many issues that surround Parkinson’s disease. Talked about caregivers, DBS, movement disorder specialists, and the hosts even mentions scurvy and WebMD? Don’t miss this one … and please remember to keep your lights on!

(There are still a handful of interviews that we’re still trying to get a hold of and another set that will be aired at a later date, here’s how you can stay tuned! We’ll update links on this post as we receive them.)

Update: Photos from the day are up.

Carol Walton
Executive Director, Parkinson’s Unity Walk and CEO, The Parkinson Alliance

Got Parkinson’s? What you CAN do!

Tuesday, January 8th, 2013
Pam Quinn, Mike Achin and Renee Leverrier  at APDA's New England Biennial Conference

Pam Quinn, Mike Achin and Renee LeVerrier at APDA’s New England Regional Biennial Parkinson’s Conference

Recently my wife and I were asked to give a motivational talk at the American Parkinson’s Disease Association’s New England Regional Biennial Parkinson’s conference in Sturbridge, MA. The topic was, “Got Parkinson’s? What you CAN do.” I introduced a video clip we made that played to the song, “He ain’t heavy, he’s my brother.” This was my high school graduation song. I don’t think I really ever listened to the words then. I just wanted my diploma and to start living my life. Today it means so much more. To understand how we got to this point, let’s go back in time a few years.It was the fall of 2009 and I was stunned by my diagnosis of “Parkinson’s disease (PD).” I do not cry very often but that day as we drove home, the tears were running down my cheeks. Are you kidding me!?? I was just 51 years old and I still had a son in college. This surely could not be happening. The truth was, my wife had already diagnosed me. She knew months before my official diagnosis. I did not want to hear it. I lived in denial. So, what if my left hand would not swing while walking? So, what if my left leg dragged a little? So, what if I was losing my balance? So, what if cutting up food and writing was getting harder and harder? It was just age catching up with me. Right??

For me the next few months were horrible. I was scared, angry, and depressed almost every day. I was living my life as if my glass was half empty. Now, let’s fast forward a little. Eventually, I snapped out of my funk and started learning about PD. My wife, through her research, found a walk in NYC coming up called the Parkinson’s Unity Walk. Her hope was that the five of us (we have 3 children, Ben, Danielle, and Zach) would travel to the Walk and learn together as a family what PD was all about. It took a little bit of nudging to get me to go to NYC, but once I said yes, my life was never the same again. Have I mentioned yet how awesome my family is!? Over 50 others joined our family of five in NYC for that first Walk. Our family and friends wanted to support us. They wanted to let us know that we were not in this alone. From that first Unity Walk in 2010, all 50+ in our now signature lime green shirts, Team DominACHIN was born. We were going to fight to help find a cure. To date, Team DominACHIN has raised almost $100,000 for Parkinson’s research.

One of the best things that happened was one day I decided to start living my life as if my glass was half full. I needed to remember that I had a lot of living to do – people to meet, places to go, super bowls to witness, and even a granddaughter to meet (in just a few short weeks!!).

So, now you know why we were invited to speak at the conference. Our message is simple. If we all do some fundraising and talk about PD, we will create a boat load of money for research as well as an avalanche of information to educate the public. There is a saying; “If it is to be, it is up to me.” We all need to find our niche and go for it. Personally, we have found that we can be pretty creative and make almost any activity into a fundraiser. My older son appropriately calls them, “FUNdraisers.”

Washer’s Tournament

  • Annually, we have a Washers Tournament. The object of the game is to toss a 3″ washer in the hole. Teams of two are randomly chosen and by the end of the night, champs are crowned.
  • Each year we hold a raffle and draw the winner in the Patriots parking lot during tailgating. Only 100 tickets are sold at $20 each. We have raffled off a Patriots grill, flat screen TV and an iPad.
  • Even a yearly rock paper scissors tournament which started at a summer cookout at my son’s new house has turned into a fundraiser. He has a local bar as a sponsor for the t-shirts he sells and a Boston bar that hosts it and sponsors koozies for all attendees.
  • Team DominACHIN members have climbed Mt. Washington the last three years.
  • I am a beer pourer at McCoy Stadium. My wife painted me a rock with the Paw Sox logo to hold my tips. Many fans commented on it so I told them they could have it for a PD donation. By the season’s end she had painted many more rocks and I had $250 more dollars for research!

The list goes on and on. Just about any activity can become a fundraiser!

My message to everyone is a simple one. Get involved! I realize that PD affects all of us differently and not everyone can do everything. However, everyone can do something! Do you like to write? Write a blog or an article for your local newspaper. Are you outgoing like me? Go on your local cable TV station to let the public know what PD is all about! Can you walk or use a wheelchair? Find your local APDA walk or attend the mecca of all walks, the Unity Walk in NYC on April 27th. Got family and friends who want to help? You can make a fund raiser out of anything! Collect cans, have a yard sale, host a bake sale at work, etc.

Mt. Washington Climb

Really ambitious? Climb Mt. Washington or try a half marathon. There is a New England Parkinson’s Bike Ride in the fall in Maine. Bikers choose from a 10, 30, 50 or 100 mile course. Besides raising money and awareness for Parkinson’s, your training will get you in great shape! The best thing we can do for ourselves is to exercise.

Got connections? Use them. We asked my friends at the Pawtucket Red Sox for support and this year will be our 4th Annual APDA/Team DominACHIN Night. A PSA on the jumbotron, we all walk on the field, and 50% of the ticket sales goes straight to PD research. You’ll find people are more than willing to help out. Any idea is a good idea. Just take it and put it into action.

Can you imagine if all the members of the Parkinson’s community began bombarding the media with articles and blogs about how PD affects us? We could educate the public and if we all did at least one fundraiser a year, we could raise millions to find a cure!!

I will never stop until a cure is found and I truly believe this will happen in my lifetime. Until then we must continue to raise money and educate the public. UNITE TO FIGHT!! Don’t let PD defeat us; we have to fight back. Please take action now. What a party it will be when a cure is found! If you need help with ideas, feel free to contact me at 508-878-8739, mikeachin@verizon.net or visit Team DominACHIN’s Facebook page.

I hope to meet you all soon!

Mike Achin Team Captain, Team DominACHIN