n-Lorem Foundation

Wendy Chung, M.D., Ph.D., will share key insights gained from treating nano-rare conditions and discuss how we can prepare for the upcoming wave of personalized ASO medicines. Dr. Chung is a clinical and molecular geneticist, the Chief of the Department of Pediatrics at Boston Children’s Hospital and Harvard Medical School, and oversees the treatment of multiple patients with n-Lorem discovered and developed ASOs. The 2024 Nano-Rare Patient Colloquium is October 30-31 in Cambridge, MA. Register to attend in person or virtually here: https://lnkd.in/gv4AQGjQ?

Two years of treatment—two years of strength, courage, and blazing a trail for other nano-rare patients! ?? Susannah’s story was the first shared on the Patient Empowerment Program podcast. Now, two years later, her father, Luke Rosen, and her physician, Dr. Jennifer Bain, detail Susannah’s remarkable progress since beginning regular treatments—highlighting improvements in her motor skills, cognition, energy, and more! https://lnkd.in/gBKWTgnP

Andrew Lo, Ph.D., will introduce innovative economic models and strategic approaches to financing treatments for rare diseases. His expertise in developing groundbreaking solutions to address the high costs of care for rare conditions could pave the way for more nano-rare patients to receive treatment. Andrew currently serves on n-Lorem’s Board of Directors and is the Charles E. and Susan T. Harris Professor at the MIT Sloan School of Management, the director of MIT’s Laboratory for Financial Engineering, and a principal investigator at MIT’s Computer Science and Artificial Intelligence Laboratory. The 2024 Nano-Rare Patient Colloquium is October 30-31 in Cambridge, MA. Register to attend in person or virtually here: https://lnkd.in/gv4AQGjQ

Jennifer Bain, M.D., Ph.D., will detail the insights she has gained from her extensive career in neurological diseases. Dr. Bain is an Associate Professor of Neurology and Pediatrics at Columbia University Medical Center. She specializes in general pediatric neurology with expertise in neurodevelopment, behavioral neurology and autism. Dr. Bain is a Principal Investigator on several clinical trials of precision medicine treatments for neurodevelopmental disorders and is currently treating three individuals with n-Lorem discovered and developed ASOs. The 2024 Nano-Rare Patient Colloquium is October 30-31 in Cambridge, MA. Register to attend in person or virtually here: https://lnkd.in/gv4AQGjQ

Neil Shneider, M.D., Ph.D., will provide knowledge of what we are discovering about ALS through the treatment of rare forms of the disease. In partnership with n-Lorem and Columbia University, Dr. Shneider helped establish Silence ALS, an initiative to develop ASOs for ALS patients with nano-rare, pathogenic mutations in ALS genes. Dr. Shneider currently serves as the Claire Tow Associate Professor of Motor Neuron Disorders and the Director of the Eleanor and Lou Gehrig ALS Center at Columbia University. He is an investigator in the Center for Motor Neuron Biology and Disease where his lab focuses on the study of models and mechanisms of ALS and the discovery and development of novel therapeutics for ALS and related disorders. The 2024 Nano-Rare Patient Colloquium is October 30-31 in Cambridge, MA. Register to attend in person or virtually here: https://lnkd.in/gv4AQGjQ

Ready to shine? ?? A $5,000 Gold & Diamond Source Gift Certificate is up for grabs on our auction page! ??? Cash in for a cause and make a real difference, as all proceeds directly support the n-Lorem Foundation and nano-rare patient programs. https://lnkd.in/gnGqebWr Founded in 1984, Gold & Diamond Source is one of America’s largest family-owned jewelry stores. Auction Ends Thursday, October 30 @ 7:00pm ET We sincerely thank you in advance for participating, as this auction supports a mission that is transforming the world, one patient at a time.

Two incredibly purpose-driven events are coming up this month, and Rescue 7 will be fiercely advocating at both. Rescue 7 Chief Community Officer Effie Parks, and Founder Luke Rosen are excited to connect with community members, colleagues and friends at this year’s Biotechnology Innovation Organization Patient & Health Advocacy Summit on October 23-24. Especially this year, the Summit will be very meaningful for all. On October 30-31 we’re honored to be part of the n-Lorem Foundation Patient Colloquium! Luke and Raena will be spending time with families and joining our nano-rare community to learn and raise awareness about the most important mission in the world: to leave no patient behind. ?? Thank you, team n-Lorem. Join us. https://lnkd.in/eNyqF_Dh

With a name like Ireland, it’s no wonder her paintings are pure gold! A new art piece has entered the auction gallery ?? YOU can bid on pieces of art handcrafted with hope by n-Lorem patients. Get those wallets and purses ready – it's for a potentially life altering cause! Visit our website to view the entire gallery and start bidding today! https://lnkd.in/gnGqebWr ? Auction ends Thursday, October 30 @ 7:00pm ET? ? Art pieces will be displayed at the upcoming 2024 Nano-rare Patient Colloquium in Cambridge, MA, While the auction will conclude during the Colloquium reception, you don’t have to be in attendance to bid, run up the price, or win! We sincerely thank you in advance for participating, as this auction supports a mission that is transforming the world, one patient at a time.

Take a glimpse behind the curtain as we offer you a sneak peek of the 2024 Nano-rare Patient Colloquium. We’re thrilled to welcome back longtime biotech journalist and current Features Editor of The Transmitter, Brady Huggett, to the podcast. In an interview with n-Lorem founder and CEO Stan Crooke, they preview the upcoming Colloquium, diving into key topics that will shape the conversation at the event and around nano-rare diseases in the year ahead. https://lnkd.in/eqtvZtQA