Thank you

Thank You

  • Together We Climbed Jacob’s Ladder

    21 years of love! 21 years of inspiration! 21 years of commitment, devotion and community power! All fuelled by one boy, our Jacob. Jacob’s inspirational life brought us all together, and what an impact we were able to make. Jacob climbed his ladder of hope, charity and faith and we followed him along his path. And what a journey that was. His legacy will continue for years to come through the Jacob’s Ladder Norman Saunders International Prize at Sick Kids Hospital, thanks to you. Many young adults with severe and complex needs will be able to spend time in day programs, thanks to your generosity. Young children and anyone in need of swim therapy will continue to enjoy the warm therapeutic pool at the Jacob’s Ladder Therapeutic Pool at the Schwartz/Reisman Centre in Vaughan, thanks to you.  Screening for seven neurodegenerative illnesses are now free and hassle free, thanks to you. Together we have accomplished so much.  It’s rare that a charity can close its doors and say – yes, we set out on a mission and actually fulfilled it thanks to the tremendous love and support of our community. As of the end of December, Jacob’s Ladder will no longer be accepting donations but Jake’s legacy will thrive forever through the many initiatives we have achieved together. We are so grateful for this journey with you.   

  • A final note from the office

    Some time ago, at a lecture I attended, the speaker said, “regardless of what is going on now, good, bad or otherwise; this too shall change”. I have never forgotten that statement, and it comes up often in many parts of my life. This is one of those times.

    In late 1997, the wonderful people at our local Starbucks came to us, telling us, that they were going to do a fundraiser in support of the Gene Replacement Therapy trial that Jacob was going to participate in at Yale. And from that point, Jacob’s Ladder was born. Well, almost, kick in the support and guidance of our family and Bert Stitt, then The Canadian Foundation for Control of Neurodegenerative Disease, dba Jacob’s Ladder was born. Community.

    The focus of the charity was to support some very directed objectives, and for that we needed to raise funds. As with the support of Starbucks, we reached out to our community, which at the time was primarily, young families, their parents and grandparents and the companies they worked for and supported. Everyone helped.

    Operating on a shoestring, as we continue to do, we enlisted volunteers to run the organization in any way we could. I can remember vividly ‘receipt writing nights’, with 10+ people gathered around a dining room table handwriting donation receipts, stuffing envelopes and mailing them. That continued for many years until it became too onerous to service the needs of our ever growing donor base. Shortly thereafter, we automated with a proprietary software program (still in use today) developed by Dan Litvack, a volunteer. That automation, under the watchful eye of Bert Stitt and our volunteer auditor to this day, Harvey Taraday, helped us take the next step as a charity. We are forever thankful for their commitment and continued support.

    That’s how we started, and to be honest, that’s how we grew. Community.

    Along with all the growth, we still needed support, but this time we needed a real pro. Ellen, myself and our board could only do so much-so it was that fateful day, Nora Glass, a neighbour, came into our lives. Remember, ‘and this too shall change’, and wow, when Nora came along, did things change! She is, and always has been, that warm caring voice behind every phone call, every receipt and every newsletter over the years. Thank you Nora.

    In all this time, the underlying premise behind Jacob’s Ladder continued; supporting incredible projects, accomplishing major milestones, with the community behind us all the way. That has never changed.

    In fact, that community support and involvement is what drove us (Ellen and team) to develop more community centric events, like the Family Fun Days, The Jake’s Gigantic Gives, and more recently Rock with Jake and Jake’s Jams. These were designed with our community in mind, as they grew and their interests changed, we had to do the same.

    Jacob’s lessons to us as a family, to our community were at the core of everything we did. And that was felt in every event, every newsletter and every communication we delivered.

    Jacob’s Ladder developed into a conduit for Jacob’s voice and everyone was listening. We all strived to be kinder, more present and appreciative in today’s distracting world.

    From Jacob’s Ladder, spawned Project Give Back, another values based organization run by Ellen and team, promoting strong community development in our future leaders within the school system. Spreading these messages and ideals through our young people has had a global impact as these new influencers develop a voice of their own on the world stage.

    While Jacob’s Ladder, The Canadian Foundation for Control of Neurodegenerative Disease will cease operations on December 31 2019, almost 22 years after it’s inception, our values, our accomplishments, and our foundation will continue to be strong for generations to come.

    To our board, to our donors, and most of all, to our entire community; your support, your guidance and most of all, your love has helped us communicate Jacob’s message throughout all these years. Thank you, and please don’t stop sharing these messages.

    Thank you for helping us climb to a cure.

    Jeff and Ellen.

  • Saying Goodbye

    One day in 2001, a knock on our door. A stranger stands in front of me and she tells me that she’s the co-founder of a small charity created around her beloved son Jacob. She might have drawn breath before saying they need an Executive Director but I’m not sure. She’s heard that’s what I do, so would I do it? I froze but eventually, after what seemed like forever, I said I would need to know more about the charity, need to meet her co-founder husband, need to learn about what was involved and shared that I was newly retired and loving the life so it would take a lot of consideration. Like so many who have met Ellen, it wasn’t long afterwards that I met, I learned, I considered and here we are almost 18 years later. A lot of work, yes, but throughout it has always been a most rewarding place to be. With Jeff, Ellen and a team of incredible volunteers, I’ve shared moments filled with extreme happiness and also a time filled with extreme sadness. So much has been accomplished by the amazing couple I met so many years ago. I am proud to have been part of this organization, part of this incredible team.

    My final note – know that if Ellen shows up at your door, things are going to happen.

    Nora Glass
    Executive Director

  • The Jacob Trossman Family and PMD say thank you

    When we were warmly welcomed into Jacob’s Ladder in 2005, our goal was to fund research to find a cure for Pelizaeus-Merzbacher Disease (PMD). Over the years, we provided funding for several projects that furthered our goal. Unfortunately, a cure is still a dream for PMD families and we are hopeful that one day a treatment can be found.

    Over the course of Jacob’s almost 18 years, there are some outstanding healthcare providers who demonstrate exceptional care and thoughtfulness towards our son and our family. In times of crisis, little acts of kindness have a tremendous impact. It is for that reason that we are pleased to announce the establishment of an endowment fund at Holland Bloorview Kids Rehabilitation Hospital named for Jacob Trossman: Jake’s Award for Extraordinary Healthcare Providers.

    Jeff and Ellen taught Andrew and me that having a Jacob with a neurodegenerative disease does not mean a life of seclusion and sorrow. Through their example, we are able to give our Jake a life filled with fun, laughter and lots of love.

     And through your generous donations, we will be able to reward people who help families like ours in meaningful ways.

    If you would like more information, please contact me at marcy.white@rogers.com or 416-420-9392.

  • The Jacob’s Ladder Norman Saunders International Research Prize: J. Paul Taylor, MD, PhD

    Jacob’s Ladder is pleased to announce that Dr. J. Paul Taylor is the winner of the 2019/2020 Jacob’s Ladder Norman Saunders Research Prize. Dr. Taylor is the Edward F. Barry Endowed Chair of Cell and Molecular Biology at St. Jude Children’s Research Hospital in Memphis, Tennessee. He trained as a clinical neurologist and now spends his days in a research lab investigating how the nervous system develops and functions, but his studies always begin with what he learns from patients.

    Beginning with genes that are disrupted in patients with neurodegenerative disease, Dr. Taylor’s lab team first determines the normal function of those genes and then looks at how their mutation causes disease, taking advantage of any model or experimental system that gets the researcher closer to an answer.

    This strategy has led Dr. Taylor to discover that some neurodegenerative diseases, including amyotrophic lateral sclerosis and frontotemporal dementia, are caused by defects in the assembly, disassembly or clearance of cellular packages of RNA and protein known as RNA granules. He has shown that these types of defects in RNA metabolism can also cause degenerative muscle diseases.

    Dr. Taylor’s team is now investigating the role of RNA granules in regulating gene activity and exploring how the granules are assembled.

    We look forward to welcoming Dr. Taylor, the 17th winner of the Jacob’s Ladder Norman Saunders Award, to Toronto and to the Hospital for Sick Children’s Grand Rounds in the spring of 2020.

  • Dr. Bouliane Reports on Research Funded by Jacob’s Ladder

    The long journey to research discovery is enabled by donors like you. Since 1998, SickKids has benefited from the support of the Schwartz family and the Jacob’s Ladder community. Your generous gifts are helping us advance knowledge about genetic medicine, complex care, and rare neurodegenerative diseases in childhood. Thank you for your longstanding support of research excellence at SickKids.

    Personally, I am deeply grateful for the two years of funding from Jacob’s Ladder to investigate the little-known gene called PLA2G6 that lies
    behind three related neurodegenerative diseases, each one fatal and without treatment or cure.
    Your gift allowed my lab to use our expertise in Drosophila (fruit fly) modelling to learn more about this poorly understood gene and its impact on neurodegeneration, with the long-term goal of identifying targets that could lead to therapies for infantile neuroaxonal dystrophy (INAD), atypical neuroaxonal dystrophy (aNAD), and Dystonia- Parkinsonism (DP).

    GENERATING A DISEASE MODEL
    In Year 1 of the study, your funding allowed my team to develop a robust Drosophila model and use it to probe the effect of PLA2G6 mutations on neurodegeneration in humans. We discovered that the loss of the fruit fly’s equivalent of PLA2G6 caused deficits in motor movements, motor coordination, and psychomotor learning, the
    effects were progressive, and lifespan was severely shortened—key features of neurodegeneration in humans with PLA2G6 mutations. We shared our results with the research community in an article published in February 2018 in the prestigious journal Scientific Reports, with the contribution of Jacob’s Ladder acknowledged.

    MODELLING PATIENT-SPECIFIC MUTATIONS
    Building on Year 1, the key activity in our second year has been to develop our Drosophila model into patient-specific models for PLA2G6 mutations. We’ve developed models for 7 patients—2 for INAD, 2 for aNAD, 2 for DP, and 1 for a never-before seen mutation in a SickKids patient, found by scientist and staff neurologist Dr. James Dowling. We know that each condition is linked to a mutation in PLA2G6, but the mutations are in different parts

    of the gene—and the location and function of the mutation seem to make the difference between a child diagnosed with INAD who lives for less than a year and a child diagnosed with DP who may live into early adulthood.

    Up until now, we’ve simply not had good animal models for these ultra-rare diseases of childhood neurodegeneration. Thanks to your support of this study, we’ve filled an important gap in our toolkit.
    With robust patient-specific models, we’re able to start to understand the mechanisms behind these mutations—we now have the ability to
    explore what’s taking place at the level of cells and molecules.

    OUR VISION: INDIVIDUALIZED THERAPY
    My hope is that these foundational insights will lead us to compounds for new therapies that could one day treat these devastating childhood diseases. With a biobank of patient-specific stem cells, we’re also now able to develop a drug screening platform to test compounds of potential using patient- specific neurons derived from their stem cells.
    These are the first essential steps that may lead to individualized therapies in the future.

    By focusing on INAD, aNAD, and DP, we hope to identify common disease pathways or shared underlying defects and possible
    therapies that could benefit people living with neurodegeneration across the lifespan, from early infancy to old age. Thank you for helping advance knowledge that we hope will transform lives in the future.

    Sincerely yours,

    Dr. Gabrielle Boulianne Senior Scientist
    Developmental & Stem Cell Biology

 

Jake’s Jam 2019

At Jake’s Jam we all felt the music, just the way Jake did. Thanks to the community Jacob built we all celebrated Jacob’s life the way he would have loved.

View Performances Here

 

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