7 Climbers Tackled Mount Kilimanjaro to Raise Awareness for ALS

Kilimanjaro Graphic_AFTER CLIMB-01Nirali Shah recently returned from the journey of a lifetime, climbing Mount Kilimanjaro.

“It was definitely an adventure to say the least a lifetime experience it was more challenging than I had expected,” Nirali said. “Every day was longer than we had thought a bit more grueling.”

Nirali put together an international team to climb the world’s tallest free standing mountain in honor of her mother Sonal Shah, who passed away from ALS. The goal was twofold, to raise awareness for ALS and to raise funds for the ALS Association Greater New York Chapter. Nirali said when the climb got tough she just thought about her mom and everything she went through since her ALS diagnosis.

“It was really all about my mom, I would think about my mom, and all the ALS patients, it was a physical activity and it’s about pushing yourself to your limit. There were times I felt I couldn’t move and I thought if I feel this way how do ALS patients feel everyday dealing with their challenges, because this is nothing in comparison to the fight ALS patients’ face after their diagnosis. It really put things in perspective,” Nirali said.

5 out of the 7 climbers made it to the peak. Nirali came just shy of the top of the mountain when she got sick from the lack of oxygen.

“I got really close to the top I was about 100 meters short, I got really sick and was vomiting and fainting,” Nirali said. “I really thought about my mom at that moment near the top, all I could hear was my mom telling me to listen to my body and not be stupid.”

Nirali said she feels like this climb has made a difference.

“I think it really got people interested. I noticed even if the donations were small a much larger number of people stepping up to donate. People I followed up with were amazing and it unifies people around a cause. It’s just the way of grabbing attention and it’s what we need to create awareness,” Nirali said.

Nirali set a goal to raise $19,341, the height of Mount Kilimanjaro in feet. So far she is at about 60% of that goal but there is still time to donate and help Nirali and the team meet their goal. You can donate by clicking here.

New York family makes The Walk to Defeat ALS a Bi-coastal affair

For the Abbate family the Walk to Defeat ALS is a bi-coastal family affair. Elan Swanson first formed the walk team Donna Donna Bo Bonna in honor of her mom Donna who lives in Los Angeles, and was diagnosed with ALS in 2016. But just one Walk team wasn’t enough, so Chris Abbate, Donna’s brother, decided their team would have a presence on both coasts and will participate in both the Westchester and LA Walks.

The Abbate family and members of Team Donna Donna Bo Bonna. Donna is pictured in the back row, centered
The Abbate family and members of Team Donna Donna Bo Bonna. Donna is pictured in the back row, centered

“Donna has a big family support group here on the east coast because it is where she lived for years before moving out to LA two years ago for a job opportunity and to be closer to her daughter and granddaughter,” Chris said.

Chris said that for his family, the Walks are all about spreading awareness, raising funds, and keeping Donna’s spirits up.

“We have noticed changes since her diagnosis. Her speech pattern has altered; she speaks a little slower, especially when the discussion becomes lengthy. When it comes to physical work, she does things at her own pace, but she does NOT give up or ask for help. Donna is a fighter, strong and courageous in all aspects of her life.

Chris says the challenges haven’t stopped Donna from living her life to the fullest!

“She has been traveling quite a bit. We met her in Nashville and she also recently went to Hawaii. She’s come back to NY twice, traveled to Vegas, and has a trip planned this year to Arizona,” Chris said.  “Even though the disease is having an affect on her it’s not effecting her joy or her love to live.”

The Abbate family says it’s important for others to step up and get involved now, before it hits close to home.

“Get involved because you never know when it might affect you or your family, or a close friend. If it does, try and support them as best you can. I encourage people to help by walking, and if possible, by donating,” Chris said. “Our entire family is Donna’s support team and we do it all for her.”

To find a Walk to Defeat ALS in your area, head to our website and register today for one of our 3 remaining Fall Walks!

www.ALSWALKS.org or call 1-800-672-8857

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.

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

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.

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.