NJ Native Plans to Conquer Mount Kilimanjaro to Conquer ALS

Nirali Shah Conquers Mt Kilimanjaro to Conquer ALS

Nirali Shah has never been one to back down from a challenge, and taking on Mount Kilimanjaro, the world’s tallest mountain, is no exception. In honor of her mom, Sonal Shah, who lost her battle to ALS in 2015 Nirali put together an international team to climb to the summit to raise awareness and funds for ALS.

“My mom lived an extraordinary life, she served as a vital ALS advocate by writing a book about her life and experience with ALS called “My Life, Legacy, and ALS”.  She also travelled to Washington DC many times to join ALSA in pushing for federal legislation and funding for research, and now it is my turn to fight and do what I can to bring attention to this devastating disease,” Nirali said.

The goal is to raise $19,341 the exact height of Mount Kilimanjaro in feet. Nirali says the climb will last 7 days and she plans to reach the summit on June 25th. This is no easy task given Mount Kilimanjaro is the tallest free standing mountain in the world.

“I’ve been doing a lot of training, but I think a big component of this will be about staying strong mentally throughout the climb,” Nirali said.

Nirali knows her mom will be there in spirit giving her that extra push to make the climb.

“My mom would have loved this. Growing up my parents and I travelled quite a bit and one of the things we always did was go to the national parks and hike there. She always said she wanted to go to Tanzania, but she didn’t make it. So this climb is for her and for all of the people whose lives are cut short by an ALS diagnosis,” Shah said.

You can support Nirali’s Kilimanjaro climb by donating at https://www.crowdrise.com/niralishah5, all proceeds will go to the ALS Association Greater New York Chapter.

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.

“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.

Help Us Fulfill Our Technology Holiday Wish List

The ALS Association Greater New York Chapter would like to thank you for helping make 2016 a great year!

We rely on your continued support to provide our PALS with the equipment and assistive technology loans they need to make their lives and the lives of their families as easy as possible. Through our Equipment and Assistive Technology Loan Program, we provide PALS with more than 1,000 pieces of equipment and devices each year. This enables our patients to remain more independent and have the ability to communicate for a longer period of time than would be possible without this equipment. Unfortunately, we often have a wait list for patients to receive equipment, so the more pieces of equipment we have for loan, the faster they get into the hands of our patients! This is why we need your help.

Please help us fulfill our equipment and assistive technology wish list by donating today!

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Garden City High School Students Raise Over $6K For Greater New York Chapter

Check-Present_1000pxWhen Katherine Squires’ Garden City High School Economics class decided to hold a fundraiser their principal, Mrs. McLaughlin made them a promise. If they could raise $500, then she would take the ALS Ice Bucket Challenge herself.

The small class of five students had decided to raise money for the ALS Association Greater New York Chapter because one student’s mother has ALS, also known as Lou Gehrig’s Disease. When all was said and done, the kids had raised a combined $6,394.17 through a bake sale and an Ice Bucket Challenge of their own.

Their principal made good on her promise, taking the Challenge during school to the delight of the students. We congratulate Katherine and her students for this accomplishment and for their principal for keeping her word to take the ALS Ice Bucket Challenge.

Wrapping Up Hope For ALS This Holiday

How one woman raised $2,000 for The ALS Association Greater New York Chapter through gift wrapping.

Melinda Cantor ALS Association Greater New York Chapter

She has wrapped a small castle, a child’s go-kart, countless boxes, and secured a second-place win in the 17th Annual Scotch Brand Most Gifted Wrapper Contest for herself by assembling a large bow for the canopy of a two-person paddleboat. But on Sunday, Dec. 22, Melinda Cantor was wrapping for the love of her mother, Josephine Pace, who died in September from ALS. After an early morning appearance on the Today show in New York City (she said that she was up at 4 am to get to the taping), Cantor was in her Long Island store, Only You Gifts, to kick off a fundraiser to benefit The ALS Association Greater New York Chapter at noon.

Customers brought gifts to the little shop to have the “wrap star” give their packages a little extra holiday magic with donations going to the non-profit’s services and research for ALS, a fatal neurological disorder also known as Lou Gehrig’s Disease, named after the Yankee player who died from the disease in 1941. There is currently no treatment or cure for ALS. In addition to funding research, The ALS Association Greater New York Chapter provides vital patient services, equipment lending and support for patients and their families.

It was the services that the Chapter provided for her mother that Cantor was so grateful for and why she wanted to hold the gift-wrapping fundraiser.

“They were there holding our hands,” said Cantor on the day of the event. “We had so many questions and they gave us emotional support.”

Friends, family and customers gathered at Only You Gifts on Main Street in Islip on the weekend before Christmas to remember Pace who was diagnosed only nine months before she passed away. Cantor’s sister Michelle Rullmann was also on hand to help out. Music was donated by Ron Legotti, a friend of Cantor’s who owns a local Karaoke and entertainment company, where the gift wrapping pro also happens to be a singer. Cantor and Legotti regaled the crowd that afternoon with a duet of “Baby It’s Cold Outside” to keep the mood festive. In all the event raise $2,000 for The ALS Association Greater New York Chapter.

Cantor recalled the help her mother received from the organization this past year.

“It was amazing what they did for us,” she said. “I saw how much support they provided for us.”

For more information on The ALS Association Greater New York Chapter click here to visit the website  You can still donate to Melinda Cantor’s gift wrapping fundraiser online by clicking here.