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

Why We Walk: Team Family United WWL300

Walk Team Banner-Family United WWL300
Walk Team Banner-Team Family United WWL300

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 New York City 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 Family United WWL300 who Walk in memory of Francis Torres.

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


My mother-in-law was a co-founder of a social club named Wunway Ladies. Wunway Ladies is a group of women from the Bronx who help out on many social issues and community events. My mother-in-law was always the life of the party, always wanting to have a great time and be a mentor to many that had the privilege to know her. Everyone called her Mom aka Lady Soulja (because she just loved camo) because if she took a liking to you she would treat you like one of her own. She loved to dance and do silly things to make us laugh. 

When my mother-in-law started showing signs of slowing down and complaining of soreness throughout her body, we were very concerned. One day we were walking, doing some shopping, and her legs just gave up on her. We went to her primary doctor and they ran tests on her for weeks. Ultimately it was determined that she had ALS. Once I heard ALS all I knew was that my wife and I had to take care of her but didn’t know what that entailed – she was always the one who took care of us. 

When she just couldn’t walk anymore, we had to get a wheelchair and we had to transport her everywhere. She couldn’t eat like she wanted, causing her to be frustrated at times. It was devastating to our family because she was the rock to our family. My daughter simply cherishes her grandma so having to explain to an eight year old what’s happening to her grandma was one of the most difficult things I ever had to do and to this day she still asks when grandma is going to visit me in my dreams. There came a time where I was just worried for my wife because as much as she was staying strong I knew that seeing her mom in this state was affecting her. So I did my research and came across the ALS Association Greater New York Chapter. I just knew I needed some help. Finally I called and spoke with Reagan Swaine who from day one has been a breath of fresh air as she invited us to a seminar to talk about our situation and the options that we have. Honestly it was what we needed to help us try to get through this ordeal. 

We were planning a fundraiser to help our team FAMILY UNITED raise support for the New York City Walk to Defeat ALS that we were planning for. The Walk team helped us obtain literature and other items to assist us spread the word in our neighborhood. I made her promise to come and make an appearance to her fundraiser. I knew she was weak but I knew she wanted to see all her friends and family. The day of the fundraiser came and she was there taking pictures with everyone, smiling and just having a good time. We were overwhelmed by the outpouring of love and support that she received and, more importantly, the awareness of ALS to everyone who was there.

Three days later, Lady Soulja succumbed to her fight against ALS. We as a family were devastated and we still are. But I’m happy that she kept her promise to stay and make it to her fundraiser and see the impact that she had on people. 

She kept her promise and we will keep ours to help fight for her and for everyone that suffers from ALS. ALS has no race, no gender preference, even if you’re rich or poor. Anyone can get ALS but together we can UNITE and help the FIGHT and maybe one day we can FIND A CURE.

Hope to see you at the WALK in NYC. We will be there! FAMILY UNITED! 

DONATE TODAY.

Jay Storm
Team Family United WWL300 

ALS Walk Team Photo - Team Family United WWL300
ALS Walk Team Photo – Team Family United WWL300

Why We Walk: Team ALStars for a Cure – Team Max

Hudson Valley Walk Team: Team ALStars for a Cure: Team Max
Hudson Valley Walk Team: Team ALStars for a Cure: Team Max

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 Hudson Valley 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 ALStars for a Cure – Team Max
who Walk in honor of Max McComb.

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


The first time I heard of ALS was the year of the Ice Bucket Challenge when my company supported the cause and challenged people to donate and participate as a group outside our corporate headquarters in Manhattan. Little did I know that a few years later, this disease would affect me personally.

My husband, Max, started with slurred speech back in March of 2015. Thinking it was a possible stroke, we went to the doctor only to find that this wasn’t the case. It took many various specialized doctors and tests to finally determine and confirm in January 2016 that it was ALS of the bulbar. Since that day, our dreams of moving and retiring were put on hold so that we could understand and focus on this debilitating disease. Over the months ahead I have seen an active man who had a passion for food, cooking, baking, and canning change before my eyes to no longer being able to eat, drink, or taste by mouth. The disease weakened his tongue and throat muscles and also robbed him of his voice.  He can only communicate by texting on his phone or using a whiteboard. I have seen a physical change in him week to week and month to month. The disease continues to rob him of life and has now affected his legs. He has trouble walking and standing or even getting up from a chair. Simple movements that we do involuntarily and take for granted are now a challenge for him.

ALS is a horrible disease and a life changing event. I hope that people will become more aware of how this can strike anyone and what challenges you face. The ALS Association Greater New York Chapter has provided great support to my husband and me.
These people are truly dedicated and caring and provide you with resources and support to help you get through the journey.

Most importantly, we need to find a cure so that others in the future can get to live out their dreams. I encourage people to donate to the cause and participate in the Walk to Defeat ALS. It’s a great event that provides love, hope, and support to the caregivers
and PALS.

Regards,

Mary Jean McComb
Team ALStars for a Cure – Team Max

Hudson Valley Walk Team: Team ALStars for a Cure: Team Max
Hudson Valley Walk Team: Team ALStars for a Cure: Team Max

ALS Greater New York Chapter Receives 4-Star Rating from Charity Navigator, December 2016

ALS Greater New York Chapter Received 4 Star Rating from Charity Navigator, December 2016
ALS Greater New York Chapter Received 4 Star Rating from Charity Navigator, December 2016

Revolutionary Study Identifies New Genes Involved in ALS

Barrow Neurological Institute and IBM Watson Health today announced results of a revolutionary study that has identified new genes linked to amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease. The discovery gives ALS researchers new insights that will pave the way for the development of new drug targets and therapies to combat one of the world’s most devastating and deadly diseases.

The groundbreaking discovery involved IBM Watson, a cutting-edge form of artificial intelligence, to help unravel the mysteries of the brain and provide Barrow scientists with never-before-known data. IBM Watson became known around the nation in 2011 when it competed against human contestants on Jeopardy, and won. Continue reading Revolutionary Study Identifies New Genes Involved in ALS

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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Senate Passes 21st Century Cures Act, December 7th

Senate Passes 21st Century Cures Act

Yesterday, the Senate passed the 21st Century Cures Act, sending the groundbreaking legislation to President Obama’s desk for a signature. The new law will provide billions of dollars to help accelerate the discovery, development, and delivery of promising new treatments by funding research and streamlining the drug review process. Importantly, the bill also will help preserve access to complex rehab technologies (CRT) power wheelchair accessories.

The 21st Century Cures Act is groundbreaking legislation that has taken over two years of negotiations. Thank you to all of the ALS Advocates who wrote letters, made phone calls and spoke to legislators about the legislation. Because of your hard work, ALS Association priorities were included in the final legislation. Continue reading Senate Passes 21st Century Cures Act, December 7th

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.

New ALS Model Argues for Early Treatment

ALS Research BannerWashington, D.C. (December 2, 2015) — Results from two independent research groups on an important new mouse model of inherited ALS gene C9orf72 indicate that development of disease pathology precedes neurodegeneration, and can be reversed by therapies targeting the mutant gene responsible for the pathology. The studies were funded in part by The ALS Association.

Continue reading New ALS Model Argues for Early Treatment