Why We Walk: Team Charley’s Angels

Why is the Walk to Defeat ALS so important to patients, caregivers, friends, and family?

Even more than the sense of community, love, and friendship on Walk Day, your support of the Westchester Walk to Defeat ALS provides much needed care and equipment to patients as well as advancing research for treatment and a cure for this devastating disease. Each of our Walk Teams have their own unique stories about why they Walk each year. We’d like to share one of those stories with you about Team Charley’s Angels who Walk in honor of Charley Braunfeld and in memory of Leon Braunfeld.

During this holiday season, we hope that you’ll remember why you Walk and continue to support all of our amazing families.

When The ALS Association Greater New York Chapter asked me to draft this email, I thought about it for three days, started several drafts and almost told them I couldn’t do it. As devoted as I am to the fight against ALS and as appreciative as I am of all that the ALS Association offers, each draft started to come across as a letter of despair, outlining the difficulties Dad and our family have faced since Dad’s diagnosis almost seven years ago.

But, then, I started thinking about my children (ages 4 ½ and 1 ½), my niece (age 5 ¾…she’s very specific about the ¾) and my nephew (age 3 ½).  What would they say if you asked them about Grandpa? What would they say about Walk Day? What would they say if they were asked to share their positive energy with the ALS community?

They would enthusiastically yell “there’s nothing bad about Walk Day!” and run to get their Charley’s Angels t-shirts.

They would tell you that they are Grandpa’s special helpers and talk you through all of the things they do to take care of Grandpa: how to make sure his arms are comfortably positioned, how to drive his wheelchair; how to hold the buttons on the wheelchair and the Hoyer lifts; how to carry Grandpa’s pillows and arm braces from floor to floor when it is time for Grandpa to get ready for bed; how to stand in front of Grandpa when you speak to him so that he can see you.

They would gleefully reenact the ALS Ice Bucket Challenge by grabbing whatever containers they could find and announcing (through uncontrollable giggles), “I am participating in the ALS Ice Bucket Challenge in honor of Grandpa and I am going to challenge [whichever other person was in the room watching their reenactment]!!”

And the youngest would run over to Grandpa’s wheelchair and announce “Bhampa…up” – her method of telling the nearest grown-up that she wants to go for a ride in Grandpa’s wheelchair while sitting on Grandpa’s lap.

Each of them would tell you how much they love Grandpa and how much Grandpa loves them. And what makes their relationships with their Grandfather even more beautiful is that they never knew him before the disease; they were each born after his January 2010 diagnosis. They don’t know who Grandpa was before the disease took over his body.  For these children, Grandpa is a paralyzed, fully-dependent man in the wheelchair who can’t talk, move or eat, but who loves old movies, has an eclectic taste in music, who smiles from ear to ear (as best he can) when they enter the room and who loves them to the moon and back.

So, as we each consider our end of year donations … As we each get ready for Walk season 2017… As we each continue to care for the ALS patients and caregivers in our lives and remember those that we have lost – let’s each see the fight against ALS through the eyes of children.  Everything we do, no matter how seemingly small a gesture, matters and makes a difference. Every opportunity to join Walk Day is a chance to walk side by side with people you love. Every dollar you can donate is one proverbial step closer to a cure.

Everybody truly can be an Angel!

Want to meet these adorable children? Charley’s Angels will see you at the Westchester Walk in June!

Wishing you and your loved ones health, strength and happiness in 2017.

Jessica B. Turnof
Charley’s Angels

Westchester Walk Team: Charley's Angels, Walking to Defeat ALS 2016
Westchester Walk Team: Charley’s Angels, Walking to Defeat ALS, 2016

Walk to Defeat ALS Takes on New Meaning For One Long Island Family

The Long Island Walk to Defeat ALS, which will be held this year on Saturday, September 17th, is the largest ALS Association walk in the nation, with more than 7,000 participants. Each walker, fighting for a common cause, yet every person holding onto their own unique story.

Long Island Walk to Defeat ALS Team

The Finkelstein family.

This year one story that stands out is Cindy Finkelstein’s – Captain of the newly formed “Team Cindy.”

“I’ve always walked under the name Team Gordon. I was walking in memory of my mother, my aunt and my grandfather,” Cindy said.

This year for the first time the Long Island Walk to Defeat ALS takes on a whole new meaning for Cindy and her family, since she was diagnosed late last year with ALS.

Continue reading Walk to Defeat ALS Takes on New Meaning For One Long Island Family

Westchester Walk to Defeat ALS Co-Chairs Present Student With Scholarship Award


Fran and Bill Monti, co-chairmen of the Westchester Walk to Defeat ALS, present a scholarship check to Zeke Rogen, a 2016 graduate of John Jay High School in Cross River, NY. “The scholarship is given to a person who expressed a desire to enter the medical profession or who has faced the challenges of a life threatening disease,” said Bill.

This is the 15th year of the scholarship in memory of the Monti’s son, William Glenn Monti, who died of ALS and was also a graduate of John Jay high school. Zeke’s father has been living with ALS for the past 10 years.

Team WTF Walks to Win The Fight!

Steve Marino’s sister, Lorraine Darienzo, said that Steve never lost his sense of humor even after he was diagnosed with ALS. That’s why he’d appreciate the name that his friends and family picked for their Westchester Walk to Defeat ALS team: Win The Fight, or as they like to abbreviate it, WTF. It’s a phrase Steve would often mouth when he got frustrated trying to communicate his needs after he lost his voice.

A Bronx, NY native who worked as an auditor for Liberty Mutual, Steve married his childhood sweetheart, Janet. The couple have an enormous network of friends who helped the family during his illness and continue to show their support through Team WTF. “It takes a village to take care of someone with ALS,” said Lorraine. That group of friends and relatives return every year to make Team WTF one of the biggest and most successful Walk to Defeat ALS teams in Westchester.

Lorraine lives in California but is still able to serve as team captain. She organizes Team WTF with the help of co-captain, Robert Caccavo, Steve’s high school buddy and her older brother Jack, who lives in Connecticut. “Lorraine is a shining example of a team captain and an amazing advocate for the Walks,” said Brett Murphy, Manager of Fundraising and Special Events for The Chapter.

The generosity of their friends has helped propel Team WTF to become the top fundraising team at the Westchester Walk to Defeat ALS for the past three years, raising over $100,000 in total. More than a hundred people walk with them every year. Lorraine attributes some of that success to the support she has received from the Chapter’s Walk Department in setting up the team’s Walk fundraising page. “The people who work there are wonderful,” said Lorraine who admits she isn’t technically savvy. “I feel comfortable calling them for anything.”

Steve, who died in 2012 at 55-years-old, was an athlete who excelled at a variety of sports. Watching him weaken from ALS was one of the most difficult parts of the disease for his family. That has become the driving force of Team WTF to continue to raise money for ALS patients. “We don’t want anyone to go through what we went through,” Lorraine said.

To join a Walk to Defeat ALS go to www.alswalks.org or Linda Berman, Senior Walk Program Manager at (212) 720-3042 or lberman@als-ny.org.

A PALS’ Many Gifts

PALS Scott Anderson

Over the past few years the Andersons have been grateful for the many gifts that have come into their lives following Scott’s diagnosis with ALS.

In 2014 when Scott Anderson was diagnosed with ALS, he and his wife, Kim, began looking for a new home. He was quickly losing the ability to walk and they knew Scott wouldn’t be able to go up and down stairs much longer. At the same time, on the other side of town, Diane Schmid was selling her fully accessible home, one that was built for her husband who died of ALS almost 20 years ago.

“When Diane opened the front door to let us in I could not believe how this was unfolding,” Kim Anderson said. “In my mind it was not a coincidence.” They had found the perfect house for Scott, lots of windows with great views and a Koi pond in front. They closed on the home in June 2015. They were fortunate as well to find a friend in Diane who is able to give them advice about living with ALS and provide emotional support from her experience.

Continue reading A PALS’ Many Gifts