Tag Archives: ALS Awareness

Resist and Persist in the Fight Against ALS

Resist and Persist T-Shirt for ALS Awareness

Resist and Persist is the mantra Jon Selikoff lives by. Whether it be to fight for a political cause — or to fight against his disease — Jon wants it to inspire people to stand up for something.

“The phrase ‘Resist and Persist’ just kept popping into my head and I felt I needed to express it visually,” Jon said.

Jon decided to use that visual expression to make T-shirts and use the proceeds for a fundraiser. Since Jon was diagnosed with ALS in 2015 he said picking the ALS Association Greater New York Chapter to donate the profits was a no brainer.

“When I was in the process of being diagnosed, we really struggled to find a doctor that was covered by my insurance. My mom reached out to the ALS Association Greater New York Chapter and was connected with Chapter nurse Kayvan Freeman, who in turn recommended Dr. Daniel MacGowan at The ALS Association Center of Excellence at Mt. Sinai Beth Israel. I’m indebted to Kayvan, because she led me to Dr. MacGowan who was finally able to give me a diagnosis in December 2015,” Jon said. “I had been seeing different neurologists all throughout 2015, so it was a very long year and to finally have it resolved was just such a relief. And I’m sure as my disease progresses, I’ll come to rely on the Association Greater New York Chapter more and more.”

Jon says he was shocked by the amount of support his fundraiser received. In part, he believes it’s because of the versatility of the phrase ‘Resist and Persist,’ which can pertain to everyone’s everyday struggles.  The fundraiser brought awareness to his fight against ALS and in the process raised more than $4,500 for the Chapter.

“The success of the fundraiser far surpassed any goals I had. I was hoping to raise at least $500, maybe $1,000. But to my surprise in the first run, I sold 133 shirts. When the shirts arrived and people started posting pictures, more people wanted them, so I opened it up again. Frankly, the support from my friends just blew me away,” Jon said.

Jon says it’s important to continue the fight to raise awareness and funds for ALS.

“As there’s no cure and barely any effective treatments, clearly not enough is being done. I have found that not everyone even knows what ALS is. Sometimes Lou Gehrig’s Disease clues them in, but not always. It’s a challenge because it’s not lung cancer. It’s not a common disease and it’s not something you can just say, “Don’t do this and you won’t get ALS.” I wish I had the answer,” Jon said.

But he believes if people continue to ‘Resist and Persist’ in the fight against ALS there will be a day when there is an effective treatment and a cure.

If you are interested in starting your own fundraiser to help fight ALS, click here or contact Vivian Jung at 212.720.3043 or vjung@als-ny.org.

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

Ryan’s Journey: 35 Miles on his 35th Birthday for ALS

35 for 35 Run to Support ALS Association Greater New York ChapterHave you ever woken up thinking I want to do something special to celebrate my birthday this year, something to make this year really stand out? Ryan Gibeau is turning 35 on April 28th and this year he plans to make the day count. So here we are one month out from the big day and Ryan needs your support, he will be running 35 miles in Central Park to raise money and awareness for ALS.

“ALS is a terrible disease that takes away person’s ability to walk, talk, run and be in control of his or her own body. While I am still fortunate enough to be able to run I want to use my body to help those who can’t, which is why I am donating all the money from this run to the ALS Association,” Ryan said.

This is a tall task since Ryan said he’s never run a full marathon, his longest run was 20 miles, but he’s been training hard, ready to be part of the fight to cure ALS.

“I would say some people think I’m absolutely crazy and the distance is too far, but most people are really excited about it. I mean why wouldn’t you do something for such a great cause if you have the ability to help?” Ryan said.

On the day of the run April 28th, there will be a live feed so you can follow Ryan’s journey on Facebook.

Over the next month there will be incentives provided to donate money including the ability to pick and choose songs on his running playlist and, dress him up in funny costumes, and ride alongside in a Central Park Pedi-cab! Check back here frequently for updates on new donation incentives.

If you would like to support Ryan and the ALS Association Greater New York Chapter you can donate here. 100% of the proceeds will go to the Chapter and help us continue in the fight to find a cure, and to provide compassionate care to all our patients and families.

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.

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.

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.

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.