ALS Association Greater New York Chapter Names Kristen Cocoman New President and CEO

Cocoman has been affiliated with The Greater New York Chapter for over 15 years

NEW YORK, November 1, 2017 – Today, The ALS Association Greater New York Chapter announced that Kristen Cocoman will be the next President and CEO, effective November 1st. Cocoman has been with the Chapter since 1999, where she has worked with founding chapter President CEO, Dorine Gordon, and currently serves as Chief Development Officer.

“I am excited to take on this new role at the Chapter. I remain committed to the organization’s mission of providing compassionate care and support to patients and their families while relentlessly pursuing treatments and ultimately a cure for ALS,” Cocoman said.

The Chapter currently serves more than 800 people living with ALS, and is the largest Chapter in The ALS Association’s nationwide network, raising more than $6 million annually to advance patient services and research.

“We are thrilled to welcome Kristen into her new role. She has been a passionate advocate at the chapter for many years.  We are looking forward to continuing in the fight against ALS under her leadership,” ALS Association Greater New York Chapter, Chairman of the Board, Allen Popowitz said.

The Chapter sponsors global research initiatives, supports care services at five multidisciplinary ALS treatment centers, hosts seven Walks to Defeat ALS across New York and New Jersey and The Lou Gehrig Sports Awards Benefit which has become one of the premiere ALS fundraising events in the country.

About ALS Association Greater New York Chapter

The ALS Association Greater New York Chapter serves patients and families throughout the New York City, Long Island, Northern & Central New Jersey, and Westchester & the Hudson Valley. The Chapter plays a major role in promoting the mission to lead the fight to treat and cure ALS through global research and nationwide advocacy while also empowering people with Lou Gehrig’s Disease and their families to live fuller lives by providing them with compassionate care and support. The ALS Association is the only national non-profit organization fighting Lou Gehrig’s Disease on every front.

For more information about The ALS Association Greater New York Chapter, visit our website at http://www.als-ny.org, Facebook and Twitter.

ALS Research Update from New York Genome Center Scientific Director and CEO – Dr. Tom Maniatis

From donations raised through the ALS Ice Bucket Challenge, The ALS Association, in partnership with the Greater New York Chapter, made a $2.5 million commitment to the Center for Genomics of Neurodegenerative Disease (CGND) at the New York Genome Center (NYGC). This commitment, combined with a matching gift from the Tow Foundation, was one of the driving forces supporting the NYGC’s ALS research program in 2014. Three years later, the NYGC’s CGND has made enormous headway in the ALS genetics space and has become one of the major leaders in the field. Their accomplishments are broad in that they have sequenced and analyzed hundreds of ALS DNA samples, while pairing this information with patient clinical history and more. We are pleased to note that Tom Maniatis, PhD, one of the NYGC’s original founders and renowned ALS researcher, was recently appointed Scientific Director and Chief Executive Officer of the NYGC.

For part II of our NYGC progress update, today we sat down with Dr. Maniatis to learn how ALS Association donations impacted the NYGC over the years and his vision for the Center’s future.

Thank you Dr. Maniatis, for taking the time to sit down with us today and congratulations on your new position as Scientific Director and CEO of the NYGC. I know you have a long history with The ALS Association. Can you tell us about that and how you got involved in ALS research?

Over 20 years ago, my sister was diagnosed with ALS. Soon after her diagnosis, I was approached by Robert Abendroth, one of the original founders of The ALS Association, about the possibility of chairing a committee whose objective was to attract scientists doing basic research, like myself, into ALS research. At the time, ALS research was dominated by clinicians, which is important, but there was an element of basic cutting-edge research that was missing from The ALS Association research program. I came onboard and chaired the committee with Robert. Together, we brought in basic research scientists, and ideas emerged, programs were generated, and funds were provided. Things really started moving. However, it became clear that in order for this program to become successful, it required a full-time scientific research administrator. That was when Dr. Lucie Bruijn was recruited to help run The ALS Association research program. I worked closely with her over many years to develop and expand The ALS Association’s research committee and programs. The earliest advance was to focus on ALS genetics, which clearly influenced my decisions about helping to establish the NYGC later.

How did ALS research get established at the NYGC?

When I first came to New York in 2010, I had already worked on trying to understand the interactions between astrocytes (i.e. neuron support cells) and neurons, which was funded by The ALS Association. We were working on mouse stem cell differentiation into motor neurons and then later human stem cells. We also studied how gene mutations affected transcription and gene expression. This is an area where I worked much of my life. At that time, the genomic methods were just being developed. It became clear the infrastructure needed for this type of work did not yet exist in New York, so there was relatively little activity in genomics. I reached out to the scientific leadership in New York and was pleased that everyone had the same concern and a common desire to establish a robust genome center in New York City. Our institutional founding members, comprised of the top academic leaders, came together in 2011. The institutional founding members of the genome center provided startup financial support and an agreement to serve on the NYGC Board of Directors. That is how we got started. It was a consequence, in a very direct way, of my interest in ALS.

How has ALS Association funding support impacted the NYGC?

The ALS Association contribution of $2.5 million and the matching grant from Leonard Tow and the Tow Foundation made it possible for the NYGC to create the infrastructure to establish a unique global ALS Consortium. This landmark initiative is defined by data sharing, having common Internal Review Board procedures, including patient consent forms, and an agreement to collaborate in generating and analyzing ALS genomic data. Lucie recently commented on how unusual it was to see something this vibrant and internationally connected come together so quickly. That was really our goal.

Do you have a message for our donors that made this support to the NYGC possible?

I believe that the approach we are taking is fundamentally important for ALS research, as it provides the infrastructure for ultimately developing effective treatments for ALS. We got this important initiative off the ground, but it, of course, requires continued funding. The more patients we can sequence, the more information we are going to have. The cost for each patient for whole genome sequencing is significant. Supporting the framework and infrastructure that allows us to continue this is very important. We must continue to raise funds to keep this initiative going. There is always a threat of not being able to fund it, and as a result, lose the momentum in this program. So, that is the message – to emphasize the importance of the continuity of financial support for the NYGC’s work in ALS research. The ALS Association’s investment in this research will help fulfill our joint mission to better understand the mechanisms of this devastating disease and discover new therapies and therapeutics to improve the lives of ALS patients.

Sequencers_1
Sequencers at the New York Genome Center

What do you see as the future of the NYGC?

There are three main areas that we are currently focusing on: ALS, cancer genetics, and autism. There is actually some symmetry in these three research programs. The one you know about is in ALS, which is a consortium-based effort to collect genomic data of ALS patients, along with their clinical data. The goal is to harmonize this information in a way that one can explore the nature of the effects of ALS mutations. Dr. Hemali Phatnani leads this program. Her NYGC laboratory and the Center for Genomics of Neurodegenerative Disease, reflect our primary objective – to have consortium based aggregation of clinical and genomic data. We use this data to better understand ALS disease pathways utilizing cutting-edge genomic technology and disease models. That is our major effort at the NYGC.

There is also a symmetric effort going on at the NYGC in cancer genetics. Here we are working with Drs. Harold Varmus, Charles Sawyers, and all of the institutional members of the NYGC, with the goal of establishing a large-scale, shared database of genomic and clinical cancer data. The NYGC excels at generating data and one of our real strengths has been in genome sequencing. I think we are recognized as one of the major players in the whole genome sequencing. Because of our unique expertise, we were awarded a prestigious Center for Common Disease Genomics grant from the National Institutes of Health. Obtaining this award was significant, considering we were only in operation for two years at the time.

This grant supports our research program in autism. Because of the cooperation with the Simons Foundation and two of the top geneticists in autism – Drs. Evan Eichler and Michael Wigler – this is a major program at the NYGC. We are also in discussion with various neurologists in the city about establishing a similar program in other neurodegenerative diseases. Our overall objective is to be an intellectual and data center for these major disease areas and enable the New York scientific community to use genomic approaches to study disease pathways, which we obviously feel is required to develop drugs to treat these diseases.

Thank you for taking the time to sit down with us today to share the NYGC story and your vision for its future. We look forward to hearing the many more great successes targeting ALS coming out of the NYGC!

Read part I of our interview on October 6, 2017 featuring NYGC CGND Director, Dr. Hemali Phatnani.

For more information about the New York Genome Center, click here and here.

Article originally written by the ALSA National Office

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.

Greater New York Chapter Expands Patients Services with the Introduction of 2 New Support Groups

The Greater New York Chapter is proud to announce the addition of support group services in the Bronx and Queens.

The newly formed support Group in the Bronx will be held at the VA Hospital. Both Veterans and non-veterans, family, and friends are all welcome. The group will be lead by a member of the VA staff and a member of the Greater New York Chapter and will take place on the second Wednesday, monthly from 1-3 PM at the James J. Peters Medical Center at 130 W. Kingsbridge Rd, Bronx, NY 10468.

The Greater New York Chapter will also be holding the first Queens Support Group on June 21st from 6-8 PM at  SilverCrest Center for Nursing and Rehabilitation 144-45 87th Ave., Briarwood, NY 11435. Friends, family and PALS are all welcome to attend. This support group will be held every third Wednesday of the month from 6-8 PM.

Five Boroughs NYC Map with new ALS Support Groups highlighted in Bronx and Queens

“The addition of these two support groups provides a needed service that allows both PALS and family to access support in their borough, and closer to home. This will help fill a gap especially for our families in Queens. Travel is not easy for many of our PALS and their caretakers and families. We want everyone in our area to have access to the support and care they deserve,” Michelle McKenzie, Patient Services Coordinator said.

For questions regarding the new support groups you can contact Michelle McKenzie at MMcKenzie@als-ny.org or 212.720.3045.

Hospital for Special Surgery Program Expanding from Half to Full Day Clinic

The ALS Association Greater New York Chapter and the Hospital for Special Surgery are proud to announce additional clinic sessions at the Association’s Certified Treatment Center. The expansion of services will ensure that more ALS patients in our region have access to comprehensive care.

“We are excited to expand our multidisciplinary care ALS clinic to an additional day. Our clinics strive to provide high quality care, support and information for those living with ALS and their caregivers with the support of the Greater NY Chapter,” Dr. Dale Lange said.

One clinic will be reserved for new patients, the other for established patients. The current clinic is held on Wednesday afternoons. The additional HSS clinic will be held on Tuesdays at 12:30PM. For more information and/or to schedule an appointment you can call 646.797.8917 or 212.774.2361.

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