Support Leo Malkin

In my search to learn how to use Revit (a 3D program for architects), I was fortunate to meet Leo.  Last fall 2018, he and my husband, Zigi Putnins, worked on designing, obtaining, and setting up the computer system I would need.  It was then up and running in January of 2019. In a year, I went from the unknown to currently finishing up my first Habitat single-family subdivision project from design development to construction documents. When I met Leo he was able to walk, drive, and lived in a home with his dad, Barry on a hill with many steps.  Since then because of ALS, Leo is now in a motorized wheelchair, unable to drive.  They now live in Hackensack in an accessible apartment and fortunately, except for the bathrooms, my office is accessible.  In addition to teaching me, Leo is now doing a second job for Habitat rendering the projects I am working on.  Leo would like to continue working, but he can no longer afford the Revit program (about 3,000 a year) and is limited to using the Access bus transportation system due to not being able to afford a handicapped-accessible van. Living with ALS, especially since Leo’s uncle recently passed away from the disease, is a frightening thing as Leo looks towards the future.  Please help to keep Leo working and engaged in a productive life. I’m grateful to know Leo as a person and appreciate the great work he has done for me. He is smart, answers all my questions or finds the answer, and he is patient, even as I click too much or forge ahead of him blindly on Revit. He also enjoys a good laugh with me as we work, either over my missteps or sharing stories, and likes blueberry scones (who doesn’t?). Any amount you are able to contribute will be hugely appreciated to help Leo keep working as he fights through the challenges of his day-to-day life. Leo’s Story: I first must thank Cathy Benson and her family for assembling this page. Cathy gave me my first break into architecture. I helped her with a rendering for Paterson Habitat for Humanity, trained her in Autodesk Revit, and grateful I was able to help with moving her work faster and contribute to giving her a clearer representation of her architectural projects. I also must thank all the staff at Kesler Rehabilitation Hospital - especially Alison Fitzgerald and Eileen Yorke. I see Alison twice a week for physical therapy. She has become a tremendous supporter as I continue on this journey. Also, Eileen is one of the best wheelchair seating specialists in New Jersey. She and Greg Kerins from NU Motion helped get me a great power wheel through Medicare, Horizon Blue, and Team Gleason. We are mostly looking for funding for a wheelchair van, medical expenses, and travel/hospital expenses for medical trials. Ultimately, whatever funding we are able to receive to help with the many expenses, I’d be so grateful. ALS has plagued my mother’s (Harriet Malkin) side of the family, at least back to my grandfather, if not further. My Uncle Charlie Braunfeld just passed on from this disease after a 10-year fight which he was mostly on machines. Fortunately, as of now, the rest of the family has not shown symptoms. Prior to my diagnosis with ALS, I had careers In Motion Picture, Photography, Theater, and Events. I was a stagehand, theatrical drafter, rigger, lighting designer, moving light programmer and trainer. I was a ski racer, an extreme skier, a mountain biker, a rock climber and a competitive archer. I successfully built a rocket that flew over 10,000 feet.  A year and a half ago or so, I started to lose my ability to walk on my own and to shoot; let alone pick up a 10’ rocket. Even before that, I started to notice things. I left the theater business because my strength was going and went to Bergen Community College to learn to draft and model for architecture. I felt I needed a change from freelance fieldwork, and had design skills that could benefit a firm in the construction business. One day I was walking across the quad and a girl noticed I was walking with a limp. My dad took me to Dr. Carney (an orthopedist in Ridgewood) because at first, we thought it was a structural problem or arthritis due to all the heavy work, and my engagement with extreme sports. That wasn’t it. I also tested at Columbia Presbyterian when my mom started to show symptoms for Ataxia in 2012. In 2019, I saw my first neurologist, Dr. Mitsomoto at Columbia Presbyterian, specializing in Motor Neuron Diseases who sent me back to the ALS Clinic at Columbia Presbyterian. I started to lose my balance more and more where I needed a brace and polio crutches (MobilityDesigned.com) to walk. I was in therapy with Valley Hospital twice a week. Three months later,  I still did not have answers with an exact disease. I was starting to trip and fall more. In the early fall, Eileen (wheelchair specialist as mentioned) at Kessler was helping me navigate wheelchairs. I had been using a manual fixed wheelchair (see video). I had become semi-paraplegic and lost the ability to walk on my own without holding on to something. I can stand but for a limited amount of time. Eileen and Greg Kerins (NU Motion) convinced me that I would eventually need a power chair that could elevate, change position, move me and hold me up when my body upright couldn’t. The power chair came after a bunch of revisions and finding the funding for the seat elevator and attendant control through Team Gleason, https://teamgleason.org/ and Nu Motion https://www.numotion.com/. Your support and donations will be so helpful on many levels; such as, to help me keep working (which includes training others in Autodesk software), the suite costs $2700 a year. It will also help pay for medications that insurance or government agencies don’t cover- e.g. Radicava and Spravato. And, I hope to get accepted into medical trials which incur costs of travel and transportation for hospital stays. Lastly, my father and I hope to eventually reach our goal to get a wheelchair van ( $70,000 and up). Your help in donation, shares to your friends and overall general support is greatly appreciated. (I’m crying while I am writing this excerpt.) I hope everyone infected with this horrible disease will receive all the help they deserve. Lastly, I have to thank my dad and mom (may she rest in peace) for supporting me my entire life, and more recently my dad for helping me with care and things that are very hard for me to do. Last month, I gave up driving because it was getting too hard and too dangerous. Dad has been willing to take me to doctor appointments and push me around in my manual chair when unable to take the power chair. Thank you for all your help and please pass on to friends, family, and colleagues. I appreciate and welcome your support.