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.

Greater New York Chapter Helps Patient Pursue His Dream of Helping Others

eddie

Eliseo “Eddie” Ilarraza has dedicated his life to helping others, working as an addiction counselor at a detox center, a career he was forced to take a step back from when he was diagnosed with ALS in 2002. He is now confined to his bed, using an eye tracking device to communicate.

“When I found out there was no cure, I was devastated. I just thought of dying. It was like I was struck by lightning, I froze, cried, and swallowed my own tears,” Eddie said.

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A PALS’ Many Gifts

PALS Scott Anderson

Over the past few years the Andersons have been grateful for the many gifts that have come into their lives following Scott’s diagnosis with ALS.

In 2014 when Scott Anderson was diagnosed with ALS, he and his wife, Kim, began looking for a new home. He was quickly losing the ability to walk and they knew Scott wouldn’t be able to go up and down stairs much longer. At the same time, on the other side of town, Diane Schmid was selling her fully accessible home, one that was built for her husband who died of ALS almost 20 years ago.

“When Diane opened the front door to let us in I could not believe how this was unfolding,” Kim Anderson said. “In my mind it was not a coincidence.” They had found the perfect house for Scott, lots of windows with great views and a Koi pond in front. They closed on the home in June 2015. They were fortunate as well to find a friend in Diane who is able to give them advice about living with ALS and provide emotional support from her experience.

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Long Island PALS Accepted as Research Ambassador at Annual NEALS Conference

2015 CRLI

As a retired optometrist from Long Island, Frank Verdone has a clear understanding of the science behind clinical trials that may help to find a cure for ALS. As a person living with ALS, the 55-year old former long distance runner has enthusiastically volunteered to be trained as a NEALS Research Ambassador to educate others about the latest ALS clinical trials and inspire PALS to participate in them.

When Theresa Imperato, RN, Nurse Coordinator at the ALSA Certified Center at Stony Brook University Hospital, got an announcement that NEALS was seeking Research Ambassadors, she thought of Frank because of his medical background and interest in current research. “He wants to find a cure if not for himself but also for those diagnosed in the near future,” Theresa said. Frank has also participated in ALS studies so he has first-hand experience with clinical research.

As a result, Frank was accepted into the program and attended the 14th Annual NEALS Consortium Conference last November. The ALS Clinical Research Learning Institute, sponsored by the ALS Association’s TREAT ALS initiative, is an intensive two day program dedicated to educating attendees on clinical research and therapy development and empowering them to be advocates for ALS clinical research. ALS Association Chief Scientist Dr. Lucie Bruijn was also in attendance. “We brought this information back to our support groups to explain why clinical trials are so necessary and to try to get patients involved,” said Frank, who was one of 34 Research Ambassadors from all over the country including one couple from Canada and one from Puerto Rico. Of those, 15 were PALS who take on the role permanently.

Frank’s wife, Mary, accompanied him to the NEALS meeting where she learned how much work is being done in the field, how compassionate the researchers are, and that there is hope for an effective treatment in the near future. Frank noted that meeting other patients and caregivers was a comfort to them; to know that they were not alone in the fight for a cure.

Frank is a dedicated advocate for the Greater New York Chapter and a natural fit as Ambassador because he finds inspiration in educating people about ALS. He often visits local school districts to talk about ALS and the story of Lou Gehrig. “These are life lessons for all children at any age,” Frank said. “After our presentation, principals and teachers always comment on how this is the best presentation they have ever heard and students are compelled to run fundraisers for our cause afterwards.”

In addition to advocacy work, Frank keeps very busy. He attends the Chapter’s monthly support group and ALS clinic at Stony Brook University Hospital. “I find the support groups to be a wealth of information,” he said. “And all of the medical providers and staff at the clinic provide us with the best care.” Frank serves on the board of Long Island based Ride For Life. He and his family started Team FrankV in his honor to raise awareness and funds for the Long Island Walk to Defeat ALS.

For more information about becoming an ALS advocate please contact Jeanne Traugot, Director of Development, at (212) 720-3051 or jtraugot@als-ny.org.

Making A (Lemonade) Stand Against ALS

Hanna-2

In the children’s book, The Lemonade Wars, two siblings compete over who can make the most money from their lemonade stands in their last week of summer vacation. Inspired by the tale in which the author actually relates the children’s business endeavors to real-world marketing lessons, 10-year-old Hanna Schiciano had an idea. She was going to start her own lemonade stand. When her mother Ondrea asked Hanna what she was going to do with the money, her daughter’s answer was very clear. “Without hesitation, she said ‘ALS.’ I almost cried.”

In 2013, Hanna’s grandmother passed away from ALS and she had benefited from the Greater New York Chapter’s services, including equipment lending and attending the ALS Clinic at Hospital for Special Surgery in New York City.

Hanna and her grandmother, Edythe Levitt, had been very close. “My mom can talk a lot and so can Hanna,” said Ondrea. As her grandmother lost the ability to speak they continued to converse by typing everything she wanted to say on augmentative communication equipment. Living near each other in Westchester, NY, the three generations spent every week together. “Hanna was very supportive of her grandmother at the time.”

One weekend last summer a determined young Hanna spent her day setting up her stand, flagging down cars and selling lemonade at the bottom of her driveway. “I thought that maybe if I did that and if I kept on working getting people to come to my lemonade stand I could donate it to ALS,” Hanna said. She took on all of the responsibility drawing up her signs, making the lemonade and setting up the stand. “I was just her assistant,” her mom insisted. After two hours of active marketing by waving down cars, she had raised $43. The money will go to the family’s Westchester Walk to Defeat ALS Team “Walking For Edythe.”

That Hanna did the whole project herself is something that she feels would make her grandmother happy. “She would be proud that I did it all by myself with no one’s help,” said Hanna. All the while her grandmother was never far from her mind. “I was doing it and I thought that I really missed her a lot.”

Team “Walking For Edythe” will be at the Westchester Walk to Defeat ALS on June 14th for the third year in a row. And as they return to walk, the lemonade stand will also be back again. “I will do another one,” Hanna said.


Click here to find a Walk to Defeat ALS near you!

A 'Celebration of Life': Kathy's Story

by Rob Borkes

kathy-1.jpgI’d like to share the story of my sister, Kathleen Borkes. Kathy was always everyone’s angel; she led an extraordinary life of always caring for others before herself. Our mother, Dorothy, was diagnosed with ALS, back in the mid-90s and fell victim to it in 1997. Our father, George, and our grandmother would soon pass as well. She took care of them all for over ten years.

Kathy thought she finally had the chance to get her own life back. However, in the spring of 2010, after months of the ‘bulbar’ symptoms having surfaced she was also diagnosed with ALS. Ironically, she would now need the handicapped-ready house she bought for our parents for her own challenges – never complaining, just trying to do what she had to do to accept her condition as her strength diminished.

Shortly after her diagnosis Kathy wrote a thank you note to me, saying: “I struggled with why you had been given this tremendous burden of my illness and care. Why this? Why now? Not for us to ask. We just have to do our best and live life to the fullest!”

Kathy willed herself to stay with us for the college graduation of our nephew, Chris. As she miraculously got closer to her 50th birthday on October 4, 2011, I asked her one more time if she would be up to a family gathering.

Amazingly she said yes, even after having said to me: “Do you really think it would be a good idea? I know I am failing and everyone will be making another trip very shortly, for my funeral. I wouldn’t want people to come out twice.”

The great part to this story is that she agreed to it anyway. She wanted to share her love for her family and friends that she had throughout her amazing life. Kathy was very specific that I was to design a card that didn’t speak of her 50th birthday, but I was to call it her “Celebration of Life.”

On October 8, 2011 the weather was perfect and the house quickly filled with those who meant so much to her. Even in her weakened state, she was able to visit with them all. The morning after, she sent an email to us that read: “I never felt so very loved! I left my room yesterday morning into a magical, beautiful wonderland of a home! Amazed, surprised, a warm fuzzy feeling!! Never thought I could feel that again… what an absolutely lovely day!”

A week later, we invited those who couldn’t make it and other close support group friends from New Jersey. My amazing sister would pass away less than two weeks later. At peace, finally.

I am so grateful for the gift I received, the lessons I learned from Kathy through her acceptance, patience, and just the dignified way she lived her life. What I am trying to say is to celebrate the joy you have brought to others, even through these difficult times. You might be surprised just how much your family and friends want to tell you how much you mean to them and that they love you. “Celebrate your Extraordinary Lives!”

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An ALS Patient With True Grit

Despite her ALS, Nell Hardy walked 11 steps to cross the finish line at the New York City Walk to Defeat ALS.

Nell Hardy showed her determination by walking across the finish line during the 2011 New York City Walk to Defeat ALS on Saturday, May 14. Hardy lives in Fairview, PA but made the trip up to New York City to take part in the Walk here because her sister Caroline Tredway is from Nyack, NY.

The walk kicked off at Hudson River Park’s Pier 46 where people gathered for the opening ceremony before heading up the route along the west side to Pier 96. Hardy made the walk in her wheelchair but then took the last few steps across the finish line assisted by her son.

“True to her spirit, our Nell walked 11 steps across the finish line with the help of her son Emmet,” said her sister. “It shows the grit, determination, and sheer joy that an ALS patient has when she accomplishes such an incredible feat.”

Don’t forget that you can still donate to the New York City Walk until the end of the year by clicking here.

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Expression Through Poetry

For one ALS patient, poetry provides a way to express feelings she cannot speak aloud anymore. Three years ago the inspiration to write poetry hit Sister Noel after meeting another nun who could not communicate. Some may not feel this is an especially astounding feat, except for the fact that three years ago Sister Noel turned 81 years old and she has ALS.

“I wrote a poem called ‘Nothingness and Aboundingness’ to express my feelings that she possessed great inner joy and peace, although she seemed to be isolated and cut off from others,” said Sister Noel. “I had never written poetry before.”

A Philadelphia native who grew up the youngest of ten children, Sister Noel joined Maryknoll Sisters Congregation, took on the name of Saint Agnes and made a mission of her life in the service of God and others.

“Our mission is to make God’s love visible in serving the poor and in working for peace and justice in our varied ministries in 29 countries around the globe,” she said. “Maryknoll Sisters meet the needs of the people wherever they are.”

Sister Noel certainly seems to have attained that goal.

“I was involved in education, teaching in St. Therese School in Chinatown, Chicago where most of our students were either immigrants or the children of immigrants,” she said. “Education helped them to adjust to a new culture and to live fulfilling, meaningful lives. I also worked with students from Chicago Theological Union in their ministerial experience. I taught at Maryknoll Sisters School in Hong Kong.”

Sister Noel has also used her poetry to express her experience with ALS.

“Much of my poetry has flowed from the experience of ALS,” she said. “Being unable to speak inspired my poems ‘The Wordsmith’ and ‘Blessings.’”

She also says that ALS has opened her up to a world of very caring community of PALS and doctors, social workers, physical therapists, and other staff at ALS clinics in Philadelphia and New York.

“They have been an inspiration and joy,” she said. “I would like to express my gratitude to Dr. Steven Scelsa and to the dedicated Staff at the Beth Israel ALS Clinic and to all caregivers for their compassionate care and efforts to improve the quality of life for all PALS.”

The Wordsmith
By Sister Noel Devine

An ordinary, extraordinary pen
With stories to tell
Snub nosed, pointy
Cylindrically shaped
Translator of my alien tongue.


Ready at hand
To share the daily grind
Or the adventuresome climb.


Words pour out like a water fall,
Cascade and flow
Into rivers and streams
Of surprising thoughts, hopes and dreams.


Sometimes blunt, sometimes smooth
Whatever the message.
It gets to the point.


Sharing memories
Of long ago times,
Long dead friends
Come alive again.


Like a poet,
Revealing what lies beneath
The surface of things.


My pen is more than a friend –
A part of me,
My heart’s voice
Gladsome, sad
Exclaiming, explaining,
Jesting and jousting.
Calling out to strangers and friends,
“I’m here, I’m here –
I have something to say.”




A Blessing
By Sister Noel Devine


Blessings come in surprising ways –
From Monday to Friday
A blessing arrives
Sandwiched between cereal and bananas
Coffee and toast
Announcing its coming
By the rattling rumbling
Of the little red cart
Pulled by Sara of the sparkling eyes
And sprightly step.
With a happy smile, she stops at my chair
We raise our thumbs in silent salute
Thumb touching thumb
Heart touching heart –


A wordless blessing.


Gladness flows in life giving streams
From thumb to thumb
From heart to heart.


What need of words
When thumb touches thumb
And heart touches heart


In a touch of love.

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“Lou Gehrig aka ALS” Wins Toyota Racing Grand Prize

Toyota Racing announced on Sunday, November 14, that the car design called “Lou Gehrig aka ALS” is the grand prize winner in the Sponsafier 2 contest. The design was created by Jeff Hallowell, who has Lou Gehrig’s Disease, along with his son Ethan, both of Maize, Kan. Their entry beat out more than 52,000 submissions. A No. 18 Toyota Camry wrapped in the “Lou Gehrig aka ALS” artwork was featured in the parade lap before Sunday’s NASCAR Sprint Cup Series race at Phoenix International Raceway.

Hallowell was diagnosed with Amyotrophic Lateral Sclerosis (ALS) — commonly known as Lou Gehrig’s Disease — in August 2002. ALS is a neurodegenerative disease that affects nerve cells in the brain and the spinal cord. It attacks these cells and causes progressive muscle weakness and deterioration, resulting in paralysis. Since shortly after his diagnosis, The ALS Association’s Keith Worthington Chapter has provided support and services to Hallowell and his family.

The ALS Association’s social media sites supported the entry created by Hallowell and his son by asking followers to vote for the car design. The winning design was a dynamic masterpiece featuring American flags, baseballs and racing flames, along with messaging to support the fight against ALS.

“The fact that Jeff celebrated his 47th birthday on Saturday at the Phoenix International Raceway really put the icing on the cake,” said ALS Association President and CEO Jane H. Gilbert. “This was a wonderful way for the ALS community to get behind Jeff and his son Ethan. In addition, highlighting their creativity brings awareness about this devastating disease to NASCAR racing fans nationwide.”

The second round of Toyota’s “Sponsafy Your Ride Contest” – Sponsafier 2 — continued the quest to take one fan’s NASCAR Sprint Cup car masterpiece from online design to real sheet metal. Fans were invited to flaunt their artistic ingenuity at www.toyotaracing.com using pre-loaded graphics, paint brushes and even their own personal photos.

“For me, this is all about ALS awareness and creating family memories for my son Ethan,” said Hallowell, who designed the winning car with his eight-year-old son. “This is truly a dream come true.’”

For his efforts, Hallowell received a prize package for the weekend’s race festivities in Phoenix, including airfare, hotel accommodations, tickets to race weekend events, a meet and greet with Toyota driver Kyle Busch, exclusive Toyota Racing apparel and spending cash. In addition to the grand prize package, Toyota has donated a 2011 Sienna mobility van to the Hallowell family to help with transportation needs.

“There have been quite a few designs that have been really, really cool,” said Busch, who drives a Camry for Joe Gibbs Racing. “It’s neat that my No. 18 Camry was selected by Jeff and Ethan for their winning Sponsafier design. The ‘Lou Gehrig aka ALS’ design will bring awareness to a serious problem affecting many people and I’m glad to be a part of it.”

More than 600,000 votes were cast during Sponsafier 2. A total of 10 finalists chosen by popular vote qualified to compete for the grand prize. A panel of judges comprised of Toyota executives and NASCAR personalities selected the grand prize winner, along with two runners-up — “CureHD” and “Buckle Up for Hannah.”

“To have more than 52,000 submissions for ‘Sponsafier 2’ reflects on how well the overall campaign was received by the fans,” said Ed Laukes, corporate motorsports marketing manager for Toyota Motor Sales, U.S.A. (TMS). “We received a plethora of cause-related designs aimed at bringing awareness to many topics, but the creativity and attention to detail showcased by Jeff and Ethan was unmatched. We would like to thank all the fans for their submissions this year and encourage you to stay tuned for the next phase of Sponsafier.”

To view the winning design “Lou Gehrig aka ALS,” Racing Team Challenge entries and all of the Sponsafier vehicle submissions, visit http://www.sponsafier.com.

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Memories of Tom – While You Can

by Ellen Masters

Those who knew Tom Masters will tell you that he was never at a loss for words. Tom expressed strong opinions, enjoyed embellishing a good story, offered unsolicited advice and debated the issues of the day passionately. Though ALS slowly robbed him of his ability to speak, he would not allow it to stifle the opinions or the stories. Using an eye tracking device and computer, Tom continued to compose and share his thoughts, which included writing a simple but inspiring poem entitled “While You Can.” He shared it with family and friends, and it immediately became a never-ending source of strength and encouragement. This—a sense of carpe diem and empowerment—is what Tom wanted his loved ones to learn from his challenge, if nothing else. At the time, my two daughters and I framed multiple copies of the poem for our home, offices and dorm rooms. But what we didn’t yet know is that we would all eventually feel a need to physically carry Tom’s words with us, to make them a very part of us.

Years later as the second anniversary of Tom’s passing approached, my two daughters, Caitlin and Jennifer, each found themselves wanting to keep his message close to them in a very specific way; to draw strength from it on bad days and inspiration from it as they each looked toward building lives for themselves and pursuing their dreams after college.

That’s when the visit to the tattoo parlor was first planned.

Caitlin is the artist in the family and had created a circular design that incorporated the letters of the poem’s title – WYC – and the letters in her own personal mantra, “Count your blessings” – CYB. Depending on how you looked at her design, which she intended for her inner wrist, the letters and message were evident. Jenn decided that she would have the title of the poem written in script at the top of her foot, just beneath her toes, where she could easily look down and see it. Personally, I had little interest in a tattoo, but the larger purpose of my daughters’ plans was certainly not lost on me, and I did want to find my own way of carrying Tom with me as time marched on. In the end, I decided to mount the diamond from my engagement ring in an earring that I would wear in the cartilage of my left ear.

And so, on the evening of October 10, 2008—Tom’s anniversary—the three of us set out together. After numerous sketches, sizings, “Oh my God”s and “Will it hurt?”s, we took away what we had come in with: our memories of Tom and our family’s battle with ALS. Additionally, each of us gained our own unfailing reminder of the lessons, inspiration, strength and personal growth with which we were left.

Caitlin will tell you that she draws any number of positive emotions from her tattoo at times both unremarkable and monumental. When the metro in her current home of Washington, DC is crowded, hot and exhausting, a glance at her wrist reminds her to be thankful that she is being jostled by throngs of people on her own two feet, without the assistance of a wheelchair. And when she works 14-hour days because the people that her nonprofit serves are in tremendous need, her tattoo reminds her that, in her own way, she’s been there and appreciates the opportunity to help others.

Like her big sister, Jenn sees her tattoo and is reminder to carry Tom’s positive spirit with her every single day. She is reminded to appreciate each moment in her life—both good and bad—and to learn from every one of them, so that she can grow into the person Tom always knew she would be. Whether making travel plans, looking for her first job, or moving to a new city, Jenn knows that she should take advantage of as many opportunities as she is given and that her whole family will love, support, and believe in her no matter the outcome.

For me, the earring is a symbol of the love and devotion of two people for more than 25 years. It is a reminder that life is about making choices. Tom chose to live life to the fullest despite the fact that it was shortened by ALS. I honor his memory each day by embracing life and all it has to offer – good and bad, happy and sad – while I can and because I can.

While You Can
Tom Masters
1956 – 2006

While you can
Run with the wind in your face

While you can
Stand up and be counted for

While you can
Grasp what is dear to you

While you can
Point the way for others to follow

While you can
Tell others how much they mean to you

While you can
Speak for those who no longer can

While you can
Taste the fruit of life’s bounty

While you can
Swallow a little of one’s ego

While you can
Smile to make someone else’s day better

While you can
Breathe in all of life’s wonders

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