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.
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.
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!
As ALS progresses, people living with the disease heavily depend on complex rehabilitative technology (CRT), especially their personally customized power wheel chairs. The ALS Association played a critical role both through direct lobbying and grassroots advocacy to win support for legislation to convince the Centers for Medicare and Medicaid Services (CMS) to abandon plans to apply competitive bidding to CRT. This makes it possible for people living with ALS to continue to obtain the CRT equipment that is customized to their needs.
CMS made this decision after bipartisan legislation (S.1132/H.R.2465) to ensure access to CRT, which was supported by 79 Representatives and 8 Senators. The ALS Association unwaveringly worked to achieve this success by making this legislation a priority at the National ALS Advocacy Conference and encouraging advocates to contact their Members of Congress. Read more to learn about this exciting legislative win.
CMS’s durable medical equipment benefit for complex rehabilitative technology (CRT) was drafted over 40 years ago. Since then, CRT equipment has advanced radically. CRT products include power wheelchairs and the personalized accessories that go along with it, such as: custom head support and seating systems, mounting hardware, adjustable leg rests and more to help meet a person’s unique medical and functional needs.
Of great concern to The ALS Association was CMS’ determination over the past several years to move CRT into a “competitive bidding” process that would make it much harder for people living with ALS to secure and maintain personally customized wheelchairs and accessories. Again and again, CMS announced their plans to do so.
Based on advocacy from The ALS Association and others, Congress has repeatedly rejected CMS’ plan to apply competitive bidding to CRT. If the CMS plan passed, it would mean that people who used this equipment would face numerous challenges when trying to access the appropriate equipment.
After a long fought battle, the ALS community achieved a very important victory! On June 23rd, 2017, the CMS announced that it has abandoned plans to apply competitive bidding rates to CRT Power Wheelchairs, which was set to go into place on July 1, 2017. Finally, CMS got the message that Congress wants to be sure that people living with ALS and other neuromuscular diseases who rely on CRT continue to have access to medically necessary CRT equipment.
The ALS Association worked closely with the National Coalition for Assistive & Rehab Technology (NCART) on this very important issue. This success wouldn’t have been possible without the tremendous grassroots efforts from our advocacy community reaching out to their local legislators. All of the emails, meetings and outreach was listened to and acted on. CMS dropped its plans that would have made access to CRT much more difficult because of the pressure they felt from Congress. As a result, people living with ALS will be protected from drastic reductions in access to specialized equipment that is medically necessary. Today, we can celebrate this win for our community, and recognize that our voices matter and are being heard!
Last week, Dr. Brian Wainger of Massachusetts General Hospital and Stephen Winthrop, Chairman of The ALS Association Board of Trustees, gave their unique clinical trial perspectives during the Northeast ALS Consortium (NEALS) webinar titled, “Retigabine Clinical Trial Update & Discussion with ALS Patient Advocate Stephen Winthrop.” For many years, The ALS Association has proudly partnered with NEALS to run ALS centered webinars to disseminate the most up-to-date information to the ALS community. Today’s post discusses the actively enrolling Retigabine clinical trial, which The ALS Association funds, as well as an honest perspective on what it is like to participate in ALS clinical trials.
Patient advocate and a championed NEALS Research Ambassador, Stephen Winthrop (pictured LEFT), joined the discussion to give his thoughtful perspective of clinical trial participation. Stephen was diagnosed with ALS almost four years ago and has been involved in over 12 ALS clinical trials – both observational (does not test a drug) and interventional (tests a drug), including the Retigabine study. The decision to participate in a clinical trial is a complicated question with arguments for and against. Stephen provides honest insights on the pluses and minuses of clinical trial involvement, while giving real life examples of some of his experiences.
“The quality and the experience will vary depending on the test and the individuals you are working with. It is a big question of fit,” Stephen explains.
He goes on to state, “The only way we are going to beat this awful disease is by finding a cure and one small way I can do that is by participating in clinical trials. Yes, it involves a needle stick and yes it takes a little time out of your day, but it is worth it. You are helping.”
Dr. Wainger (pictured RIGHT), one of the Principle Investigators of the Retigabine phase II clinical trial, gave a brief trial overview and update. The Retigabine trial is a double-blinded, placebo-controlled study to test the drug as a potential treatment for people living with ALS. The trial is actively recruiting at 12 sites in the U.S. The primary goals are to measure the effects of Retigabine on upper and lower motor neurons (i.e. the cells that die in ALS) physiology in people with ALS and evaluate safety outcomes.
During the first part of the webinar, Dr. Wainger explains the trial clinical rationale and goes over the study in detail including the goals, inclusion/exclusion criteria, the study timeline and what the study requires from its participants. The goal is to enroll at least 30 more ALS patients into the trial as soon as possible.
Watch the webinar here for all the detailed information.
The trial focuses on hyperexcitability of motor neurons. It was previously shown that people living with ALS have motor neurons (both upper and lower) that fire too many signals, meaning they are hyperexcitable. Too much firing leads to motor neuron damage. Retigabine is designed to reduce the over firing of motor neurons.
To physiologically test motor neuron hyperexcitability in trial participants in real time, the investigators use techniques called transcranial magnetic stimulation (TMS) and nerve conduction studies. These specialized tests are a way to measure the connections between motor neurons and muscles. TMS works by stimulating the motor cortex (part of the brain that controls muscle movement) with a magnet and records the response of the muscles in the hand. Nerve conduction studies evaluate the ability of motor neurons to conduct signals to muscles. An important secondary outcome of this study is to determine the potential for the use of these techniques for future ALS trials.
Stephen explains, “What they were trying to do using TMS, which looks like a ping pong paddle held above my head, was to try to make my right thumb to twitch by increasing the magnetic field. No pain was involved to see if my thumb twitched or did not twitch.”
One unique aspect of the Retigabine clinical trial to highlight is that each trial participant will donate a blood sample to be made into induced pluripotent stem cells (iPSCs). These iPSCs are then made into motor neurons in a dish, which reflect the exact genetic makeup of the person they were derived from.
The effects of Retigabine on patient derived motor neurons will also be tracked and compared to the impact of the drug on the patient. This is the first ALS clinical trial to attempt this type of comparison, which has potential as a prognostic and diagnostic tool. Patient derived iPSCs could even possibly predict how a subgroup of ALS patients respond to a drug, which would improve clinical trial design and recruitment.
Stephen adds, “There are so many aspects of this study that is adding to the knowledge base that Brian and his colleagues around the country and around the world are using that plant seeds for clinical successes in the future.”
“One of the things I have said about participating in a clinical trial is that when you are in a room with someone with ALS, do not forget about the human dimension of what you are looking at here. Don’t forget to say to a potential participant, ‘I am sorry that you have been struck by this awful disease,’ and just let that pause. Don’t forget to say, ‘Thank you or thanks for your small part.’”
“In my own experience, those seemingly routine personal touches go a long way, because in the end I do think their decision to participate is fueled in part by just a little whisper of a hope that this will maybe help me. The bigger piece is that you, as a participant, are part of an army of people – I truly believe – will bring an end to this disease.”
We are thankful to Stephen for giving his honest perspectives and we value his dedication to the fight against ALS. With passionate, committed physicians, researchers, clinic staff, allied professionals and especially clinical trial participants – both living with ALS and healthy – all working together in clinical trials, we are many steps closer to a cure.
The ALS Association sat down with Dr. Javier Jara, Research Assistant Professor at Northwestern University Feinberg School of Medicine, who just published groundbreaking work focused on brain inflammation caused by ALS. This work was published in the July issue of the Journal of Neuroinflammation. The ALS Association has proudly supported Dr. Jara since 2010 through both our Milton Safenowitz Postdoctoral Fellowship Program and a recent Investigator-Initiated Grant.
Q: Thank you for joining us today! We were happy to hear the great news that your paper was just published. It is always rewarding to hear of our scientists’ successes. Congratulations! First, our readers and I would love to know why you love working in ALS research.
A: ALS is a very complex disease in which several cellular systems are disturbed. This allows me to tackle the disease from different angles, which could be a more efficient strategy to understand disease pathways.
Q: What are the major findings of your paper?
A: This paper sought to understand the role of inflammation, especially in the motor cortex of ALS (i.e. part of the brain responsible for muscle movement). We were able to study cells that are involved in immune response in the spinal cord and brain using green and red fluorescent protein tags. These cells were increased in numbers early in the disease and we were able to observe them in the vicinity of dying upper motor neurons in the motor cortex. Our observations in human ALS motor cortex also correlated with an increase of activated cells that participate in the immune response, which is important. Our studies are novel and bring a new perspective to the role of the immune response in ALS motor cortex pathology.
“This work would not have been possible without the support of The ALS Association through the Milton Safenowitz Postdoctoral Fellowship Program. Obtaining this fellowship changed my career and I am extremely grateful for the donor’s support. I encourage donors to continue their hard work to support patient care and research.” – Dr. Jara
Q: What is the significance of your research?
A: By developing a novel ALS model to investigate inflammation, we were able to set up a strong foundation for future studies to understand the role of cells involved in the immune response. Because these cells are labeled with a fluorescent tag, we can visualize and isolate them from the brain and spinal cord at different stages of disease initiation and progression. We can also use various models that develop ALS due to different underlying causes.
Q: What are your next steps?
A: We are currently investigating the secreted factors and proteins that are increased during disease in these immune cells with the hope to establish novel molecular markers and identify therapeutic pathways.
Q: When we first funded your research, you were a Postdoctoral Fellow. Since then you have been promoted to Research Assistant Professor, which is excellent! What are your future career goals?
A: I would like to set up my own line of research in the near future and for this purpose I would like to obtain an independent faculty position. In 2015, I was funded by The ALS Association to set up an independent line of investigation from Dr. Ozdinler’s lab to understand the relationship between brain injury and ALS. With The Association grant and Dr. Ozdinler’s support, I was able to investigate what happens to upper motor neurons after a single mild cortical injury insult. These studies have been fruitful and I am currently writing a manuscript.
Q: What do you enjoy doing outside the lab?
A: I am a runner and I enjoy running marathons. I have done five marathons so far, and I am always looking forward every year to start a new running season!
That is impressive! Thank you for joining us today. We are looking forward to hearing more great things out of your lab and to read your next manuscript!
Nirali 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.
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.
“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!
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.
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.
“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 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 firstname.lastname@example.org.