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Advocating for Change on Capitol Hill: 7 Years and Counting

Janet Palkewick Advocates for ALS on Capital Hill
Janet Palkewick Advocates for ALS on Capital Hill

Janet Palkewick is defying the odds, living with ALS for nearly 27 years. She was diagnosed in 1989 while pregnant with her fourth child. When she hit the 20 year mark, she decided it was time to join the larger fight to end ALS.

“I realized I was still living for a purpose. I decided it was time to get more involved with finding a cure,” Janet said.

Which is why Janet decided to become an ALS advocate. She will be heading to Capitol Hill with The ALS Association for the 8th time this May for our Public Policy and Advocacy Conference along with her children and grandchildren. This important conference includes a day of lobbying elected officials on Capitol Hill.

“Having 7 years of experience, I’m very comfortable speaking about ALS and asking for the needed funding. Is it worth the time, expense, being drained both physically and emotionally? A great big YES,” Janet said. “I feel accomplished, I was heard. I made a difference.”

Janet admits sharing her story with lawmakers can be difficult but says the lawmakers have always been receptive.

“I have never had a bad meeting. The lawmakers or their aides have listened with genuine interest and concern. It is very important for lawmakers to understand that ALS does in fact affect the whole family. We need to show the personal side of ALS, put a face on the disease. Sometimes it gets very emotional; there are lots of tears. But that’s okay, it’s making ALS real,” Janet said.

Staying motivated and positive isn’t always easy, but Janet says the progress she has seen since her diagnosis keeps her motivated.

“More has been accomplished toward finding an ALS cure in the last 10 years than the previous 70 years. Actually, since my diagnosis 27 years ago, the most headway has been made in the last 5 years. I am hopeful! I must remain hopeful that there will be a cure in my lifetime,” Janet said.

One of the bills our advocates will be talking to lawmakers about in May, would eliminate the 5 month waiting period for disability insurance for people diagnosed with ALS. Janet says it’s important for everyone to speak up on this issue, even if you are not directly affected by ALS.

“When there is an issue to be addressed, I not only send my letter, I also ask others to do likewise. Advocacy is not limited to PALS and family, anyone can be an ALS Advocate. I am a firm believer in fundraising and advocating all year long. After all, PALS and their families need help all through the year,” Janet said.

 Advocacy week will be held from May 14th – May 16th. To join the Greater New York Chapter delegation or to find out more about how you can get involved head to our website at als-ny.org or call Wendy DuBoff at 212-720-3054.

San Francisco 49ers Legend Dwight Clark Announces He Has ALS

Dwight Clark makes the Game Winning Touchdown catch to Defeat the Cowboys in the 1982 Superbowl.
Dwight Clark makes the touchdown catch that clinches the 1982 Superbowl against the Cowboys.

Former San Francisco 49ers receiver Dwight Clark announced Sunday that he was diagnosed with ALS. Clark is well known for his epic catch that led to his team winning the 1982 NFC Championship game. Clark earned two Super Bowl Rings while playing with the 49ers, and later became the team’s General Manager.

Clark wrote an open letter sharing his story. You can read his letter here. (http://debartoloholdings.com/dwightclark.html)

Clark wrote in his letter: I’ve got to devote all my energy preparing for this battle and I would hope you can respect my family’s privacy as I begin this challenge. My ultimate hope is that eventually I can assist in finding a cure for ALS, which disrupts the lives of so many and their loved ones.”

Our thoughts and prayers are with Dwight Clark and his family. The ALS Association Greater New York Chapter is fighting alongside Clark and all our PALS to help find that cure.

SpongeBob Creator Stephen Hillenburg diagnosed with ALS

Stephen Hillenburg SpongeBob SquarePants Creator
Stephen Hillenburg, SpongeBob SquarePants Creator

Many of us have been enjoying SpongeBob Squarepants since it started back in 1999. The ALS Association Greater New York Chapter is saddened to learn that SpongeBob creator Stephen Hillenburg has ALS. Hillenburg released this statement to Variety:

“I wanted people to hear directly from me that I have been diagnosed with ALS. Anyone who knows me knows that I will continue to work on ‘SpongeBob SquarePants’ and my other passions for as long as I am able. My family and I are grateful for the outpouring of love and support. We ask that our sincere request for privacy be honored during this time.”

You can read the Variety article here.

Our thoughts are with Stephen and his family. Hillenburg says he will continue to create new SpongeBob Squarepants episodes and has no intention of slowing down anytime soon.

Traveling the Globe for The Walk to Defeat ALS

Cathy Standish Travels the Globe for The Walk To Defeat ALS, in honor of her husband Fred.
Cathy Standish Travels the Globe for The Walk To Defeat ALS, in honor of her husband Fred.
Cathy Standish was reading through her husband Fred’s travelogue when she came up with an idea to honor her late husband. Fred was diagnosed with ALS in December of 2015 and unfortunately lost his battle last month. He left behind a wonderful travelogue documenting all the places he lived and worked throughout his career as a reporter for the Associated Press.

“Fred would take pictures of himself in the homes where he lived and at local landmarks.  It’s a log of every small bureau and town or city he worked,” Cathy said.

Since Fred’s diagnosis the travelogue has taken on new meaning. Cathy is determined to be a part of The ALS Association’s Walk to Defeat ALS in every city her husband has lived and worked. This includes more than 20 cities across the US.  They will then travel Greece, where Fred worked, for their own honorary “walk.”

“I think he would be really happy with my plan, he would feel the travel log meant something and there was a reason for it. Through the travelogue we are bringing awareness and hope to the ALS community,” Cathy said.

She said the decision to tackle nearly 2 dozen Walks to Defeat ALS was an easy one.

“I have a neighbor a couple doors down who also just lost a family member in NJ from ALS. ALS touches so many more people than we think. I think it touches everybody, it may be 6 degrees of separation, but I believe it affects everyone in some way,” Cathy says.

Cathy says her motivation to keep going stems from the strong bond, love and respect she shared with Fred. She said even at the very end she did what she needed to help keep Fred’s spirits up. “I would do silly little things like disco lunch time when it was time for his tube feeding. I would play a horrible disco song because Fred hated disco. And certain things like that would make him laugh and I always tried the best I could to keep him up,” Cathy said.

She admits it wasn’t always easy helping Fred keep his fight, while also taking care of herself. Cathy says it’s important to remember your own needs as well as your loved ones.

“Be kind to yourself, and have self-compassion. If you get in a fight it’s ok. My husband and I had arguments over silly things like where to hang a picture. Just because you’re a caretaker doesn’t mean you’re not their spouse anymore. Take time for yourself; every minute you can take time for yourself,” Cathy said.

Fred spent time working for the Associated Press in New York so on her walk list is the New York City Walk to Defeat ALS on May 6th.

“I’m really looking forward to coming to NYC and feeling the energy of the city. I know amongst all the people there will be so much hope, and I will be so excited,” Cathy said.

Registration is now open for all 7 of the Chapter’s Walks to Defeat ALS. We look forward to seeing all of our amazing PALS, families, and supporters on walk day!

TEAM Ramon’s Kickers

TEAM Ramon’s Kickers

Ramon Lopez Walks to Defeat ALS in memory of his father Ramon Lopez C.
Ramon Lopez Walks to Defeat ALS in memory of his father, PALS Ramon Lopez Carrllio

High school student Ramon Lopez Florez was eager to sign up for the Long Island Walk to Defeat ALS.  In fact, at the early hour of 5:45am on the day registration launched, Ramon became the first person this year to sign up a LI Walk Team!

Ramon and his family walk in memory of his father Ramon Lopez Carrllio. Ramon’s father was diagnosed with ALS in 2010, at the age of 40. Three years later, he lost his fight to the disease.

“He was told that he couldn’t work anymore, but my dad continued to work and decided not to give up.  He said he wasn’t going to just sit around. Even with the disease, he managed to go to work for a full year after his diagnosis,” Ramon said.

Ramon was forced to grow up quickly becoming one of his father’s primary caretakers. “When we found out it was ALS, we had never heard of this, it was hard to understand. What was going to happen in the future? We had to find a way to help him. It was hard,” Ramon said.

Ramon decided last year he wanted to honor his father’s memory by joining the Walk to Defeat ALS. He formed Team Ramon’s Kickers.

“It’s good to get involved. It allows you to see you are not the only one going through tough times and there are other people looking for a cure and fighting. You are not alone in this,” Ramon said. “If we rally up into one team to find a cure, we will be one step closer to reaching our destination.”

Ramon says he will continue the fight, so no other family has to go through losing someone to ALS.

“I have so much support from my high school and my church. So many people have stepped up to either walk or donate,” Ramon said. “And I really think my dad would be very proud of me.”

Registration is now open for all 7 Walks to Defeat ALS. We look forward to kicking off walk season with all of our PALS, families, and supporters.

PALS Love Stories: David and Bonita Loomer

Love Stories Banner

Our 50 Year Journey with ALS, Our Love Story

I opened my email inbox the other day and saw an email from a man living in California, it was titled ‘Our 50 year journey with ALS, our love story.’ Not knowing what to expect I opened it and downloaded a 50 page file.

As I started reading, I realized as the Communications Manager for the ALS Association Greater New York Chapter, this was a love story I needed to share with all of you.

David Loomer met his wife Bonita in high school. Their love story started on the dance floor when she had the courage to ask him to dance.

“One might say not we were what you would call a perfect match as she was pretty formal and goal driven, where as I was more interested in experiencing life’s many wonders,” David said.

But despite their differences their relationship quickly progressed into something more serious. Serious enough for Bonita to introduce David to her mother. Bonita at the time was caring for her mother, who was diagnosed with ALS and could no longer walk or verbally communicate.

David and Bonita LoomerDavid said when it came time to propose to Bonita, she hesitated before responding.

“I vividly remember her saying, “are you sure you want to marry me knowing ALS can be familial”. I responded saying dear, we are all going to die from something, nobody will live forever, remember I’m in the business of dealing with death. I Love you, I want to spend the rest of my life with you, for better or worse, in sickness or in heath for all eternity,” David said.

David and Bonita, married had two daughters, and later two grandchildren. David said his priority was living each moment to its fullest and always putting family first.

David and Bonita Loomer with Children and Grandchildren

“Always having the thoughts of ALS in the back of our minds, never knowing if or when, caused us to do and experience things most wait until retirement years to enjoy. So looking back dealing with ALS at a young age instilled valuable lessons in both of us as to what is really important,” David said.

Unfortunately their fears became a reality when Bonita started showing signs of muscle weakness. She was diagnosed with ALS in March of 2014, at the age of 65. David said as the disease progressed Bonita never lost her will to keep fighting. He became her full time caretaker tackling it head on.

“Regardless of being imprisoned within her body, unable to do even the simplest task, she always managed to smile, that quirky little smile I fell in love with 50 years ago,” David said. “Her smile reinforced her love for me. Her body had failed but not her mind, so I became her arms and legs, we became one in each other.”

And you may wonder how after 50 years together and now taking on the role of caretaker David managed to keep the love alive. He said it’s about remembering what made them fall in love in the first place, a dance.

“Having to carry her everywhere, meant I was blessed with holding her in my arms at least a dozen times a day. She always loved to dance so I would lift her up and briefly sway, trying to sing “Can I have this dance for the rest of my life”, before placing her in a new spot,” David said.

In June of 2016 Bonita passed away with her soul mate of 50 years by her side. David said saying goodbye wasn’t easy but he knows she is now watching over the family.

“Our Granddaughter wanted to see Grammy, to say Good-bye. Not sure what the reaction would be we agreed. After seeing her she quickly responded, She is OK now, she can use her hands and feet again in Heaven. How profound was that?” David said.

In honor of Valentine’s Day the ALS Association Greater New York Chapter salutes all of the beautiful loves stories we witness each and every day working with all of you. Thank you for your continued love and support.

PVA Education Foundation Enables Assistive Technology Demonstration Project

PVA- Paralyzed Veteran's of America


The ALS Association Greater New York Chapter’s (ALS-GNY) Assistive Technology Demonstration Project enhances the lives of people with ALS (PALS) by building awareness of the computer and other technology that can help them communicate, and remain mobile and independent, for as long as possible. This critical effort is currently being funded by the Paralyzed Veterans of America Education Foundation (PVA), with a grant of $44,157.

The Project involves ALS-GNY’s assistive technology specialists, as well as members of our four Regional care teams, who are demonstrating a variety of available equipment to PALS, their caregivers and healthcare providers. Demonstrations take place during Home Visits and PALS and caregiver support groups, and at our five ALS-GNY Centers, area nursing homes, long-term care facilities, veterans’ hospitals, and hospices.

One PALS who benefited from the Project is a 68-year-old living in a nursing home who’d been successfully using eye-tracking software to enable communication. When the technology stopped working for her, an ALS-GNY specialist visited to find out why and provide a solution. Due to her disease progression, the patient’s posture had shifted enough to misalign her eye and computer. In addressing the issue, our specialist also trained nursing home staff about the technology and how to help their patient maintain the ability to communicate going forward. Healthcare providers also learned about the full complement of ALS-GNY’s patient services, which enhances their ability to care for every PALS in their care.

ALS-GNY is grateful to the PVA Education Foundation for their generosity, which is positively impacting hundreds of PALS, as well as their caregivers and healthcare providers, in our region.

Veteran and PALS Andrew Williams, and wife Antoinette Williams

 

The ALS Association Greater New York Chapter works hard with the help of PVA to provide services and care to veterans diagnosed with ALS.

Seen here is veteran and PALS Andre Williams, and wife Antoinette Williams.

PALS Love Stories: Ed and Maria Sconzo

Love Stories Banner


PALS Love Story: Ed and Maria Sconzo

Love at First Dance

For Ed Sconzo it was love at first sight.

“I went home from a Sweet 16 party, my mother and aunts were at the table having coffee, and I said to them I think I met the girl I’m going to marry, and they just laughed at me” Ed said.

He was talking about Maria, who he met November of 1955 at a friend’s party.

“When I looked across the room I saw this beautiful girl, in a beautiful dress and shoes, and I went over to her and asked her if I could have this dance, she said yes and we started to dance,” Ed said. “We danced all night, and talked, and I asked for her number.”

So how exactly did Ed know that Maria was the one after a single dance?

“You know it is true love when you want to be with that person all the time. I remember we were both always late to class, because we would meet in the stairwell to steal a kiss between classes.” Ed said. “I just couldn’t wait to get over to her house to be with her, I was always so excited to spend time with her.”

Valentine’s Day 1959 Ed officially asked for Maria’s hand in marriage and the two have been inseparable ever since. They have been married for 57 years and have 3 children and 9 grandchildren.

“I love her as much as I did on the day I married her, maybe I even love her more because I appreciate her more. The sacrament of marriage is for better or worse, and in sickness and in health and I take that vow very seriously,” Ed said.

It is a vow that took on new meaning in 2010 when Maria was diagnosed with ALS.

“The dynamics of our relationship have changed a lot. It’s very hard for her to eat so I have to feed her, I brush her teeth, I bathe her, I dress her, and I do everything for her. I don’t mind because when you love someone you would do anything for them,” Ed said. “That’s what the sacrament of marriage is truly all about.”

When the times get tough Ed says he just remembers how truly lucky he is to be surrounded each day by such a loving family.

“I feel like I’ve been blessed. I’ve been blessed with a wonderful wife all my life and beautiful children and grandchildren. I have no regrets, and I’m just happy that we are still together,” Ed said.

Ed said keeping a marriage alive for 57 years isn’t always easy. It takes work and compromise.

“My advice to any couple is to never go to bed angry, and be like a sapling and bend a little. Nobody is perfect – you have to understand the other person,” Ed said. “I would tell them just to love each other. If that spark isn’t there between the two of you then it’s not going to work.”

For Ed and Maria that spark has never dulled. It shines as bright as it did that day in 1955, when he asked Maria, for what would be the first of a lifetime of dances.

In honor of Valentine’s Day the ALS Association Greater New York Chapter salutes all of the beautiful loves stories we witness each and every day working with all of you. Thank you for your continued love and support.

Why We Walk: Team J.A.C.K.

ALS Walk- Team J.A.C.K.
ALS Walk- Team J.A.C.K.

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 Long Island 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 J.A.C.K. who Walk in memory of Chris Risotto.

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


One of my most treasured photos and memories is our visit to see Santa two years ago.  It was the first time the kids even talked to him, they’d been afraid to prior.  They would only take a picture with him if Chris and I were in it too. We had no idea our first Santa photo would also be our last Christmas with Chris.

In January, Chris started feeling weakness in his left thumb.  At first, the doctors thought he had an injury…but as the weakness spread throughout his left hand, and then to his right, we knew it was something else.  It wasn’t until June that our worst fears were confirmed with a diagnosis of ALS. On the way home from that appointment, we heard ‘Fight Song’ by Rachel Platten on the radio. We both vowed to stay positive and fight no matter what came our way, to find a way for Chris to live with ALS as long as possible, for him see our children grow up and be together as long as we could. 

As the summer went on, Chris got weaker.  Unlike many with ALS, Chris could walk, but he couldn’t hug our children, couldn’t feed himself, couldn’t shower or get dressed without help.  Chris was the best man in his brother’s wedding in July, but couldn’t speak well enough to give the toast that he’d started working on in the spring. The disease was attacking him in the worst way, and there was nothing we could do to stop it. 

We took a family trip upstate in August, to my parent’s lakefront property that we all loved. We got Chris into the new pontoon boat for a ride around the lake; it was the happiest I’d seen him in weeks. We took a family selfie, our smiles of pure joy brighter than the sun shining in the background.

Chris was called Home on August 29, 2015, after a brutal battle with ALS that lasted only eight months. He fought as long and hard as he could, in the end making the ultimate sacrifice, choosing our lives over his so that our young children remember the loving, playful, fun daddy that he was. Strength, courage, and devotion to his family, just a few of the reasons Chris was such an amazing husband, father, son, brother, and friend. 

Chris’ fight is over, but mine is not. I vowed to stay positive and fight no matter what happened. I can no longer fight for Chris, but I will continue to fight for the ALS victims of today who can’t hug their children or care for themselves, and for the victims of tomorrow who will be slowly robbed of their ability to move.  I’m not alone in this fight – Chris’ sister and I put together Team J.A.C.K., and we are joined each year by dozens of family and friends that help us FIGHT FOR A CURE for ALS. Will you join our Team, or put one together for someone you know and love? Maybe it’s a family member, a friend, a coworker.  Everyone seems to know someone affected by ALS – who do you know? 

Let’s FIGHT together. I urge you to join a team, to donate to a friend, to participate in events to educate your community about ALS and its devastating effects. Please, do whatever you can to FIGHT FOR A CURE.   

Thank you, on behalf of Team J.A.C.K., for Jacob, Abigail, Chris, and Kelly, thank you.

Sincerely, 
Kelly Risotto
Team J.A.C.K.

Long Island Walk Photo- Team J.A.C.K.
Long Island Walk Photo- Team J.A.C.K.

Why We Walk: Team Circle of Hope

ALS Walk Team Banner - Team Circle of Hope
ALS Walk Team Banner – Team Circle of Hope

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 North Jersey 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 Circle of Hope who Walk in honor of its Team Captain, Janet Palkewick.

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


I received my final ALS diagnosis on October 2, 1989. I had no computer to investigate this disease that had invaded my life. My local library had one book on ALS. The ALS Association was a mere 4 years old and the Greater NY Chapter did not exist. There was no chapter clinic, loan closet, support group. Our ALS Walk program wouldn’t be formed until 2000. One doctor basically told my husband and me, yes, you have ALS, nothing I can do for you, go home and live your remaining few years. 

So that’s what I did, I went home and lived my life. That one doctor gave me such discouragement that I gave up on doctors or seeking any further information or advice. I kept busy being a minister’s wife and raising four children (I was pregnant with #4 when I was diagnosed.). In 2006, a friend of my sister’s, invited us to the Saddle Brook Walk. Until then, I had only befriended one person with ALS. The Walk really opened my eyes! I met and spoke to other PALS and their families. I was even invited to help cut the ribbon. My family and I were welcomed into the ALS community with open arms. This one event changed our lives! 

My family Walk team, Circle of Hope, will participate in the Walk Program for our 11th year in 2017. Since that first Walk, we have had so many opportunities to spread ALS awareness through our fundraising. My team held our 7th Annual Clothing Collection in October and a LuLaRoe fundraiser in November. We sell candy bars through the year and sell ALS baseballs too. I am a firm believer in fundraising all year long. After all, PALS and their families need help all through the year so why not fundraise and spread awareness all year.   

The North Jersey Walk goal is $300,000 but we’re only 79% there. That’s an amazing accomplishment but I’m selfish. I want more for my fellow PALS and myself. I want more funds for clinic services, support groups, the loan closet and needed equipment. My daughter and I have gone to DC for ALS Advocacy Day 7 times and I will continue to go, speaking for all those affected by this horrible disease. But advocating takes money too. One drawback with being involved in the ALS community is losing PALS, PALS I’ve come to know and love. I am determined to do all I can to raise funds for research so someday soon I don’t have to say goodbye to another fellow PALS.  

Won’t you please help?

Help with more awareness, more research, more advocating…more money! Let’s end the year on a high note!!  

Sincerely

Janet Palkewick
Circle of Hope

North Jersey Walk Team Photo - Team Circle of Hope
North Jersey Walk Team Photo – Team Circle of Hope

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