Jennifer DiMartino

ALS ONE

Overview

My name is Jennifer DiMartino and I’ve had three open-heart surgeries over the course of my lifetime and I also have a pacemaker. I’m living a full unrestricted life because of cardiac advancements. I lost my good friend to ALS 7 months ago because there have no advancements for that disease since it was discovered over 100 years ago. I’m honored to be in Charity Warriors to raise critical awareness and funding for ALS ONE, an organization committed to finding a treatment or …

My name is Jennifer DiMartino and I’ve had three open-heart surgeries over the course of my lifetime and I also have a pacemaker. I’m living a full unrestricted life because of cardiac advancements. I lost my good friend to ALS 7 months ago because there have no advancements for that disease since it was discovered over 100 years ago. I’m honored to be in Charity Warriors to raise critical awareness and funding for ALS ONE, an organization committed to finding a treatment or cure for ALS by 2020 and improving care for those battling ALS now. Please help make a difference.

It became all too apparent just how much worse it could be in the spring of 2015 when a very good friend of my husband and mine, Kevin Gosnell, was diagnosed with Amyotrophic Lateral Sclerosis (ALS). Rather than curling up and waiting to die, he did some research and made other plans. On the path of his diagnosis, he met with the Massachusetts Leaders in ALS research and care. He invited them all to a conference room at Mass General Hospital to discuss an idea. He wasn’t sure they would all show up. His idea was this: If they would all work together, rather than in their own silos, would they reduce their critical time spent duplicating efforts and would they be able to come to a cure quicker. It was not an overnight decision, it took time. Time that Kevin didn’t have. He knew that. He knew his idea wouldn’t benefit him but that didn’t matter. He didn’t want anyone diagnosed after him to suffer the same fate, the same feeling of loss every day waking up and wondering which muscle would atrophy next. Would he still be able to walk? Would he still be able to hug his wife and 3 sons? Would he even wake up and for how many days would he? Doctors said the lifespan for ALS patients was 2-5 years but his form was aggressive, and he would be “lucky” if he had 3. He had a lot to do. The doctors showed up. They agreed, the plan made sense. The partnership was formed. It was called ALS ONE. The ALS leaders from MGH, UMass Medical School, Harvard Med School, and ALS Therapy Development Institute now share a science plan. They announced publicly at the Launch on January 21, 2016, at the JFK Library in front of 500 people, that they could find a treatment or cure for ALS within 4 years with proper funding and improve the care for those battling ALS now. They share a science plan, not because Kevin Gosnell had the idea, but because Kevin Gosnell put that plan in place. He mobilized the team. It was a new journey and he gave them the vehicle, the fuel, a map, and a destination. Taking the last year of his life and dedicating it to helping to cure the disease that was quickly and horrifically taking him away. He opened his doors for the past year, his family by his side, as the press, and doctors, and ALS patients and families, and his assembled team, came and went daily, sometimes many times daily, to meet with him to further his plan.

In December of 2015, my husband and I decided to hold a fundraiser to support Kevin’s new organization. At the time, I was working full-time at a company I’d been with for over 9 years. I traveled a bit for my job and I loved it there. I went full-force with the fundraiser. I’d done some smaller-scale fundraising in the past, for little league, the American Cancer Society, and the American Heart Association, so I knew the basics. I set my goal at $20,000. I spent a solid two months working on it during every hour that I was not at my full-time job, every lunch break as well, going around to local businesses and gathering raffle and auction items. It was incredibly inspiring and the event was a huge success, raising over $43,000 for ALS ONE. We doubled our goal and we were so thrilled to have raised not only such a large sum of money, but an incredible amount of awareness in the process.

Two weeks later, Kevin called and asked if I would come over to his house, he had something he wanted to run by me. My husband and I went over and sat at the kitchen table with Kevin and Kathy, as tears streamed down their faces with gratitude about what we had contributed to the organization and the passion I put into the fundraising efforts, he told us that he knew that his ALS was progressing, he could feel it daily. He was about to transition from his scooter to a full wheelchair. His breathing was changing, he was losing more and more mobility and hand movements every day. It was heartbreaking: we were all in tears as we talked about our friendship, past and present, and the days ahead. He asked me, if he was able to get one position funded, would I leave my current position and join his organization as Executive Director, overseeing the daily operations of the organization, something he knew he’d be unable to do in a very short amount of time. I was stunned. Why me, Kev? I asked. He said he watched what I had done over the past two months with our fundraiser and needed that exact amount of passion to be instilled in this organization on a daily basis. He said he knew in his heart that I was the person he wanted to fill his shoes. I was stunned, honored, and I told him that if he could assemble the partnership that he just organized, how could I possibly say no? Two weeks later, he called me with the news and asked if I could give my notice the next day. I did just that and since then, we have raised over 6 Million dollars through grants and grassroots fundraisers. The world lost Kevin to this disease on August 8th 2016, just 15 months after his diagnosis. To be sure, I have a lot to do. His journey is far from finished. The miles continue but there is an end in sight because of ALS ONE. I won’t let him down. I’m here to fight for Kevin and all others who don’t have the benefit of medical advancements that I was so lucky to have. It’s time for those advancements with ALS. I am fighting for all those who arrive in the doctor’s office after months of testing, ruling out various horrific diseases, only to be told that they have the worst of them all: Amyotrophic Lateral Sclerosis (ALS), possibly the worst of all diagnoses. The grim announcement by the doctor is followed by “and I’m sorry…there is no treatment and no cure, and you’re looking at 2-5 years at best”. What follows then is 2-5 years of an absolutely cruel and torturous existence, losing one muscle at a time, until you lose your diaphragm muscles and are unable to breathe. Some refer to this time as a ‘journey’. The people with ALS refer to it as a nightmare. Some don’t make it a full 2 years. My good friend Kevin Gosnell did not. His was a 15 month “journey”, but what he accomplished in that time will change the course of history for all those in his path and I’m honored to be a part of that mission and movement called ALS ONE. ALS ONE is a 501c3 non-profit organization based in Boston.

Every 90 minutes, someone is diagnosed with and someone else passes away from Amyotrophic lateral sclerosis (ALS). That cruel, progressive neurodegenerative disease has been around for 150 years and 77 years since Lou Gehrig was diagnosed. Since then, there has been no real advancements in terms of a treatment or cure. Nothing to slow the disease progression, nothing to ease the symptoms, and certainly no cure. The disease can strike any race, religion, or gender. Although there is a genetic component in 10% of cases, the disease is 90% sporadic, meaning that for the most part, anyone is at risk. This is unacceptable in today’s day and age of medical breakthroughs and technology, especially here in Boston, one of the medical mecca’s of the world.

Kevin Gosnell, after his diagnosis, researched why that was the case and discovered that some of the best ALS researchers in the world were right here in Boston, duplicating efforts in their

labs, across town, in different institutions and laboratories. He also found that these same incredible researchers spent a great portion of their time outside of their labs, fundraising to further their own research.

Duplication of Efforts + Critical time out of the lab + Lack of funding = A very fractured approach to one of the cruelest diseases that exists.

ALS ONE, an organization founded in January of 2016, which is an unprecedented shared approach by the Massachusetts leaders in ALS research and care, from Massachusetts General Hospital, Harvard Medical School, UMass Medical Center, ALS Therapy Development Institute, and Compassionate Care ALS. With proper funding, this team has committed to finding a treatment or cure for ALS by 2020, while improving the care for those battling ALS now.

From a research standpoint, by supporting ALS ONE, you are funding the shared science plan of the ALS ONE partners. This approach is unprecedented and includes world-renowned ALS research leaders: Dr. Merit Cudkowicz, Chief of Neurology at MGH; Dr. Robert Brown, Chair of Neurology at UMass Medical Center and Medical School; Dr. Steven Perrin, Chief Scientific Officer at ALS Therapy Development Institute; Dr. Nazem Atassi, Associate Director of the Neurological Clinical Research Institute at MGH, and Assistant Professor of Neurology at Harvard Medical School, Dr. James Barry, Co-Director of the MGH Neuromuscular Division and of the MGH ALS Unit, as well as an Associate Medical Director of the MGH Neurological Clinical Research Institute.

From a care perspective, by supporting ALS ONE, you are funding the shared care plan of the partners above and Compassionate Care ALS (CCALS), headed by Founder Ron Hoffman from Falmouth MA. CCALS provides resources including equipment, educational workshops, Medicare/Medicaid assistance, guidance and awareness in living with ALS, caregiving, and end-of-life issues for families worldwide.

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