Archive for the ‘Raise awareness’ Category

Today Show 4.25.14 – Be There!!

Monday, April 21st, 2014

(April 21, 2014) – What are you doing early in the morning on Friday, April 25th? I know where I’ll be – on the plaza at the Today Show – and I hope you’ll join me and other participants from the Unity Walk.

We will be meeting in a new location this year! You creatures of habit – pay attention! We have a new connection at the Today Show so we don’t need to wait on line to enter the plaza of the Today Show. Instead, we will gather between 5:30-6:00am in front of the main entrance to 30 Rockefeller Plaza. That’s the building that the Christmas tree is in front of in the winter. Rockefeller Plaza runs between 49th and 50th Streets and is parallel to and in between Fifth and Sixth Avenues. We will be escorted onto the plaza at 6:00am and placed in a location that will give us the most visibility during the Today Show. If you need me to reach me that morning, call me on my cell 609-651-9155.

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I used to arrive early when it’s still dark and hold a place on line for our group. I’m often the first person on line and I’ve met some incredible people while standing on line at that hour. Last year, there was a group of high school students from West Virginia who were visiting NY for the first time. They were completely ripped off by their NY cab driver, who charged each person the fare on the meter but that didn’t faze them. When they found out about the Walk, several of the students spontaneously gave me cash donations. The year before there was the 80 year old woman who drove in with her daughters from PA to celebrate her 80th birthday with the hope of being chosen for a makeover. I am convinced that it was the support from the Unity Walk crowd that got her selected and she looked amazing!

All those wonderful folks pale in comparison to the folks who show up in support of the Unity Walk. There are often several regulars – Team Cantore, Daddy and his Dopamines and the DominACHINs are in that group – but I always get to meet some new walkers and teams that I wouldn’t have crossed paths with otherwise and that’s what I enjoy most about the day.

photo from Helaine

We hope for our one minute of glory when Al Roker or one of his colleagues come out to the plaza, our signs held high and t-shirts worn proudly. We’ve been lucky the past several years and Al’s come over to speak to us. We hope you can join us in person. If you’re watching from home, use our hashtag #puw2014 and let us know you’re with us in spirit.

Helaine Isaacs
PUW Event Director

 

 

Credit Melanie Ahron IMG-20130426-00844 photo from Helaine 3

My Spiraling Road into the World of Advocacy for PD

Tuesday, April 8th, 2014

Myra Hirschhorn is a shining example of someone who has found multiple ways to serve as an advocate for Parkinson’s disease in her local community. We are grateful that she lives in New Jersey!

Helaine Isaacs
PUW Event Director

Myra Hirschhorn.pngParkinson’s disease (PD) has been in my life for as long as I can remember. As a child I watched my grandmother live with the complications. This was before the gold standard drug, Sinemet became available. The symptoms and complications were much quicker to surface and the prognosis for patients was much dimmer back then.

Fast forward to September, 1999. My husband, Stu noticed a tremor in his index finger. This led him to a movement disorder specialist and he was diagnosed with PD at the age of 53. This brought PD back into my life. Fortunately, Stu was able to continue to work for five more years. During that time I began attending the Parkinson’s Disease Support Group at Virtua Memorial Hospital in Mt. Holly, NJ. Through this support group I learned about various Parkinson’s organizations and conferences. These organizations and meetings made me aware of local resources and programs that were beneficial to me and my husband.

As I learned more, I became an advocate and found ways to provide education, resources and information to members of the Parkinson’s community.

Since 2009, I have been the facilitator of the Virtua Parkinson’s Disease Support Group. I offered to take on this role and have never regretted it. The members of this group are so supportive of one another. I’ve secured speakers on relevant topics, and provided information on current issues and upcoming events for the group.

Myra Hirschhorn 2I became involved with Parkinson’s Action Network (PAN) and am currently the NJ State Director of PAN. I’ve traveled to Washington, DC to attend the PAN Forum and have met with representatives of Congress to lobby on behalf of the Parkinson’s community.

A couple of years ago, Voorhees Senior Living, a local assisted living facility developed a PD Support Group. I assist the support group by sharing information on issues and events that may be of interest as well as helping to secure speakers. People in that area are very pleased to have a group available to them.

I was part of a group of people who worked to bring Dance for PD’s program to our area. I am thrilled that the Virtua Parkinson’s Movement Class has been in existence for a year now, with Stacey Macaluso as the talented and caring instructor.

Last year, I worked with the Willingboro Library to schedule periodic speakers at the library for people with Parkinson’s disease, their care partners and friends. In addition, the library now offers classes in Qi Gong and Delay the Disease for people with Parkinson’s as well as the general public.

At all of these venues and at senior expos, health fairs, freeholder meetings, and local Parkinson’s walks, I am “armed” with brochures and share information about the various Parkinson’s organizations. This raises attendees’ awareness of all the support that is available, provides opportunities to learn about living well with PD and how people living with PD can advocate for themselves.

Recently I attended an LSVT-BIG training for occupational therapists and physical therapists, with attendees from all over the world. I provided them with information they can in turn share with their clients. All of the PD organizations have been more than happy to provide me with information to share.

Returning to the Parkinson’s Unity Walk in Central Park each year is always a high point for my husband and me. It is empowering to see the thousands of people all gathered for this cause and to be able to touch base once again with all the organizations that provide so much support to the Parkinson’s community. The Unity Walk is the best source of information and inspiration for people with Parkinson’s disease and their loved ones.

We each need to find a way to make a difference. I encourage you to find opportunities to raise awareness and educate people in your own community about Parkinson’s disease.

Myra Hirschhorn
Team Captain, Stu’s Supporters

 

 

Ken Aidekman, PUW Co-founder reflects on the First Parkinson’s Unity Walk and its Meaning to the Parkinson’s Community

Tuesday, April 1st, 2014

To kick-off Parkinson’s Awareness month, we’ve asked Ken Aidekman, Co-founder of the Unity Walk to reflect on the first Walk in 1994 and how far we’ve come over the past twenty years. We are grateful to Margot for her vision and Ken’s commitment and support throughout the years.

Helaine Isaacs
PUW Event Director

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Twenty years ago, I witnessed 200 walkers come together in Riverside Park to raise $16,000 for Parkinson’s research. This year, over 10,000 walkers will gather and raise over 100 times more than we did at that first Parkinson’s Unity Walk!

I have seen the amazing things that a Parkinson’s grassroots effort can accomplish. I watched a small band of advocates succeed in raising awareness and funds for research in Washington. I saw Margot Zobel take a simple idea for a walk and turn it into a dynamic force for good. She sensed a vacuum in New York and turned it into an opportunity for people around the world. Her strength derived from her conviction that individuals have the power to change their lives through creative cooperation.

The energy that Margot brought to the Walk remains with us today. You can see it in the faces of family members who have traveled great distances to be here. You can hear it in the voices of people living with Parkinson’s who describe how it helps get them through the difficult the months ahead. And you can feel the love that goes into every t-shirt and sign supporting a grandparent, parent, spouse, child or friend.

What is it about this Walk? Joan Samuelson, the founder of the Parkinson’s Action Network, talked about it at the second Parkinson’s Unity Walk.

“I don’t know how many of you were in the same situation I was when I decided to come and people said “Are you going to walk?” and I said “No, I can’t walk that far.” Because often I can’t. And it was pretty nice for me to be with others in the same situation – who didn’t know if they could make it for sure the whole way.

One thing I knew was that it would be OK if I didn’t, which isn’t always true in the world we live in. We try to be equal to everyone else around us. We want to be able to do all the things that we used to do. It’s hard to give those things up. But, it was nice to walk today knowing that if at some point my foot started doing the crazy things it does or if I got tired that it would be OK. And that somehow, somebody in this crowd would make sure that I got here by the end.”

The Walk is about a day of faith, trust, friendship, love, commitment and empowerment. There are many individual teams at the Walk, but no matter what, we are all members of the same team – the team to end Parkinson’s disease.

Together, we take pride in our accomplishments in fostering community and funding research. We find inspiration in our growth and empowerment. But, there’s a long road ahead before we cross the finish line. We want nothing less than the total banishment of Parkinson’s disease from the human condition. Let our battle be remembered as a glorious triumph by those who believed that one person can make a difference.

Each step in Central Park brings us closer to our goal.

Join us on April 26th. We can’t wait to see you!

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Ken Aidekman
Co-founder, Parkinson’s Unity Walk

Put the FUN in FUNdraiser

Friday, February 21st, 2014

(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

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