Tag Archives: ALS Stories

Emily Moles Tackles New Role as President of the Young Professionals Group

Emily Moles is all too familiar with the devastating effects of ALS. Emily’s mom, Bethanne Moles was diagnosed with ALS in 2010. Three years ago Emily decided to join the ALS Association Greater New York Chapter Young Professionals Group (YPG), and was recently elected YPG President.

“I wanted to get involved, because living out of state, away from my mom, I wanted to find a way to continue to help out,” Emily said. “My mom is part of a really great family and has so much support around her, but not everybody has that. Why wouldn’t you want to help if you have the time and resources?”

Emily said it’s important to recognize that while strides have been made there is still a long way to go when it comes to both awareness and ultimately finding a cure.

“In terms of awareness there has obviously been a lot of progress since my mom was diagnosed,” Emily said. “With ALS it’s still all about making someone as comfortable as possible, that’s all you can do. It’s heartbreaking because it’s such a progressive disease and the decline is hard because people are all there mentally, and to be fully aware that you are deteriorating is terrifying.”

Which is why Emily has lofty goals for the YPG this year, including increasing membership, fundraising, and event attendance.

“I want to raise a ton of money, I want to fundraise because money is what got us the research discoveries, and in the end money is what helps patients. There is very little that I can do in terms of finding a cure, but I can definitely sponsor people to do so,” Emily said. “I also want more patient outreach by our members and volunteers. People with families who live out of state need us, and it’s important to show our core community that we really care.”

If you are interested in joining the YPG, their next meeting is on May 25th at the ALS Greater New York Chapter office at 42 Broadway Suite 1724. For more information or to be added to their mailing list for meetings and fundraising events, you can email YPG@als-ny.org or call Brett Murphy at 212.720.3052.

“Team We Are Carol Moeller” Takes on the 2017 Long Island Marathon to Help Fight ALS

We Are Carol ImageIn an amazing demonstration of strength and courage, three months after her ALS diagnosis Carol Moeller finished her final 10k race at the 2016 Long Island Marathon.

“She couldn’t speak, was having trouble walking, couldn’t swallow, and she delayed her feeding tube operation so she could compete in the 10k race. She did it and she didn’t give up. She was a week away from having a feeding tube inserted into her body, but still pushed herself into completing a 10k,” Carol’s son, Kevin Moeller said.

Carol’s other son Dennis Moeller added, “Mom was in the middle and we surrounded her like secret service. She fell twice during the race.  A mile before the finish line, we helped her up and my brother and I each had an arm around her.  We told her to slow down and she just moaned the word, RUN! She finished the race and it was really special.”

This year the Moeller family will be running the Long Island Marathon, on May 7th, in honor of their mother Carol who passed away last October.

“I know it would make her feel good that I’ve been training the way she always did. We owe it to her. We saw her run with very limited abilities and I said if my mom can run 6 miles while already losing her ability to smile, stand up straight, or to cry, there is no way I can’t run the 26 miles. There is no quit in any of us,” Dennis said.

Running was always a part of Carol’s life, so the tribute is more than fitting.

“She would wake up at 4:30 in the morning and run 6 to 10 miles, 6 days a week, and be home in time to make breakfast, get us to school, and go to work. That was her routine for 30 years,” Dennis said. “Running is the only way to honor her, in the way she truly deserves.”

The Moeller family is hoping this run will bring with it support, because their goal now is to raise awareness, and bring in funds for research. So far “Team We Are Carol Moeller” is closing in on its $20,000 dollar initial goal.

“My mom kept asking for something to help her, some magic pill that would take this all away. And you know, hopefully through these efforts we are going to help someone, somewhere, come up with that magic pill.” Kevin said.

But until that day the Moeller family says they will continue to run for ALS and continue to fight for a cure. Dennis said when he needs motivation to keep on going he just hears the words his son told him during one of his training sessions, “Daddy, I think Grandma is cheering for you from the sky.”

If you would like to show your support and donate to Team We Are Carol Moeller head to tinyurl.com/carolmoeller

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!

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.

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

Why We Walk: Team Sonal

Central Jersey Walk Team: Team Sonal
Central Jersey Walk Team: Team Sonal

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 Central 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 Sonal who Walk in memory
of Sonal Shah.

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


Just months before my Mom’s first ALS symptoms surfaced in November 2009, she was actively running for township committee in our hometown of Basking Ridge, NJ.  My Mom, Sonal Shah, was eventually diagnosed with ALS in June 2012 and passed away in November 2015 after a valiant battle. 

My Mom always had a drive and sense of purpose throughout her life.  In addition to her passion for public service, she dedicated her life to her work as a corporate professional.  As her daughter and only child, I learned a tremendous amount from just watching her balance her responsibilities as a mother, wife, career woman, and global citizen.  

My Mom exuded warmth and love wherever she went and whomever she talked to.  She was also an unstoppable force and knew how to get things done.  

After my Mom’s diagnosis, she threw herself into ALS advocacy work.  She knew the importance of ALS awareness and fundraising and was determined to create a successful team at the Central Jersey Walk.  She was truly the driving force behind “Team Sonal” these past few years.  My dad and I continued her legacy at this year’s Walk in October.  Even though it was our first Walk without her, it was very touching to have everyone come together for a cause we all deeply care about.  We will continue to make the Central Jersey Walk a success.

In addition, although wheelchair-bound and with speech degradation, my Mom forcefully lobbied Congress in 2014 and 2015 at the ALS Advocacy Conference in Washington DC to increase resources dedicated toward finding a cure for ALS and improving patient care.  This year, my dad and I joined Congressman Leonard Lance at the Conference on Capitol Hill to promote the Dormant Therapies Act, which will accelerate the development of treatments of diseases, like ALS.

My Mom also wanted to share her story, spread awareness, and help other patients and their families struggling with this horrifying and life-taking disease.  Typed with only one finger because the others were by then tightly curled against her palms, she wrote the book “My Life, Legacy and ALS” which was published in February 2015.

My Mom achieved her final goal a month prior to her passing.  As a result of her tireless advocacy, May was established as ALS Awareness Month in New Jersey in October 2015.  My Mom was ecstatic to see this become law.  

Without the help of the ALS Association Greater NY Chapter with the funding it receives from the Walks, my Mom would not have been able to do all the things she accomplished.  From the equipment loan program to the emotional support our family received, the Greater NY Chapter really helped us stay one step ahead of this horrific disease.  

The ALS Association is working hard on all fronts with research, clinical programs, advocacy, and patient care.  Your participation and contribution to the Central Jersey Walk to Defeat ALS will make a big difference as we continue our quest to end ALS and offer care to people suffering from this horrible disease.  We must continue to fight together, in honor and in memory of all of our loved ones.

Warm regards

Nirali Shah
Team Sonal

Central Jersey Walk Team
Central Jersey Walk Team – Team Sonal

Why We Walk: Team Never Give Up

Why We Walk - Team Never Give Up
Why We Walk – Team Never Give Up

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 Jersey Shore 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 Never Give Up who Walk in honor of Mindy Rosenstein whose son, Noah, is the Team Captain.

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


My symptoms first began in 2013 and in June of 2015 I was diagnosed with ALS. With the love and support of my family and friends, I have maintained a positive attitude. Every day I have the choice to either feel sorry for myself or live my life. I chose to live my life and embrace each day with love and laughter. 

Right after my diagnosis, I reached out to the ALS Association of Greater New York. The ALS Association of Greater New York sponsors the ALS Clinic that I go to at Columbia Hospital, a loan closet for equipment, assistance with technology, advocacy groups, research to find a cure and a monthly support group.  After some hesitation, I went to a support group meeting and the sharing of information and resources from the group was incredibly helpful.  The ALS social worker and nurse as well as the other PALS and CALS made me and my family feel that we were not alone.  I continue to go to meetings and I hope that my family and I are able to help others with what we have experienced.  

The ALS Association of Greater New York Chapter has assisted us in navigating this complex journey with kindness and compassion and our family wanted to give back. Since we all love the Jersey Shore, our family talked about participating in the Jersey Shore ALS Walk. We wanted to raise awareness as well as money for research and resources. My son Noah decided to start a team for the walk.  As team captain he named our team “Never Give Up,” a motto I live by. He set a goal for our team to raise $2,500, not even imagining that he could raise that much.  After contacting friends and family whom he thought would donate a few dollars, and maybe come to the walk, we were overwhelmed by the outpouring of support. There were over 50 of our friends and family members that participated in the walk and our team ended up raising over $11,000.  

Our family will “Never Give Up” our fight. We hope you will join us in defeating ALS by donating to the Jersey Shore Walk to Defeat ALS this holiday season.  

Best Wishes for a Happy, Healthy Holiday!
Mindy Rosenstein
Never Give Up

Jersey Shore Walk Team - Team Never Give Up
Jersey Shore Walk Team – Team Never Give Up