We’re grateful for the continued support and interest in our work this year. If you’d like a quick update on what we’ve been up to please click here to read the full newsletter. If you’re interested in receiving future newsletters by email, you can sign up in the footer form on each page of our website.
We are deeply grateful to the Giorgio Foundation and Stapelfeld family for their generous support of iNFixion Bioscience. Their partnership helps fuel our mission to develop new therapies that restore healthy NF1 protein (neurofibromin) to treat and prevent symptoms of neurofibromatosis type 1 (NF1). As both researchers and NF1 parents, we’re especially thankful to have partners who share our commitment to improving the lives of people and families affected by NF1.
Members of the iNFixion Bioscience team recently attended the 2025 NF Conference in Washington, DC, hosted by the Children’s Tumor Foundation. As scientists and NF1 parents, we are deeply grateful for the opportunity to connect with collaborators, learn from others in the field, and be part of a global community committed to changing the future for families living with NF. The conference underscored the urgent need for new treatment options, and the iNFixion team left even more motivated by our approach to increasing NF1 protein expression as a way to directly address the root cause of the disease. Thank you to the Children’s Tumor Foundation, generous sponsors, and the entire NF community for an inspiring and impactful event. We are looking forward to seeing everyone again next year in Denver!
In this new company video, we share our vision of developing treatments that target the root cause of NF1. Thanks to Savanna for sharing her story, to our advisors and collaborators for their support, and to the team at WCB Films for making this video happen!
Watch to learn more:
Thank you to the Kaufelt family, in partnership with Penny’s Flight Foundation, for hosting a meaningful evening in support of iNFixion Bioscience and our mission to develop breakthrough treatments for NF1. The event brought together a passionate community of supporters committed to accelerating new treatments for NF1, and we’re deeply grateful for the generosity and momentum this event has generated.
iNFixion recently attended its first Gilbert Family Foundation (GFF) meeting where the team learned about many new NF1 preclinical models, including rodent models and organoid models, that are being developed with funding from the GFF.
iNFixion’s Medical Director, Dr. Mick Frost, presented our work on developing an improved animal model to evaluate the cognitive, learning and social deficits in NF1. Mick is a pathologist, and NF1 parent, who is 100% dedicated to NF1 research. Great job, Mick!
iNFixion is honored to be partnered with the Gilbert Foundation in fighting for people living with NF1.
Watch the GFF video about the event here: https://lnkd.in/gQre-ymu
iNFixion Bioscience is developing an antisense oligonucleotide (ASO) therapy designed to boost NF1 protein expression, aiming to address the underlying root cause driver of neurofibromatosis type 1 (NF1) symptoms, namely NF1 protein haploinsufficiency. Following promising in vitro data, demonstrating the potential for this approach across multiple human cell types, the company has launched a seed financing round to advance in vivo rodent studies. This funding will support crucial preclinical research to further validate the therapy’s safety and efficacy, and to move it one step closer to the clinic for NF1 patients.
iNFixion CEO, Herb Sarnoff, was featured in the Translational Research Showcase of the Invest in Cures Forum where he shared the personal motivation behind founding iNFixion Bioscience and the company’s ongoing efforts develop a therapy to address the unmet needs of individuals, like his daughter, living with neurofibromatosis type 1 (NF1). Invest in Cures is a full-day forum focused on the promise of impact investing and innovative collaborations to revolutionize rare disease therapies. This unique annual event brings together researchers, clinicians and investment professionals from leading foundations to discuss cutting-edge approaches to supporting and funding breakthrough therapies in rare diseases.
Read more about the event here.
Herb Sarnoff, CEO of iNFixion, along with several company investors joined forces in support of the Neurofibromatosis Network’s annual three-day advocacy trip to Washington, DC. Alongside over 100 NF advocates from across the country, Herb and his team met with Congressional leaders to push for continued federal funding of NF scientific research through both the CDMRP’s NF Research Program and at various institutes of the NIH. These efforts are critical in securing continued Federal funding to advance basic science and treatments for NF — not just for those living with NF, but with the potential for broader breakthroughs in cancer, genetic therapies, chronic pain, and more. Advocacy drives progress.
Learn more about the NF Network’s Advocacy Program here.
Members of iNFixion’s executive team headed to Brussels for the 2024 Global NF Conference, the leading international meeting shaping the future of neurofibromatosis and schwannomatosis research and clinical care. Organized by the Children’s Tumor Foundation and the European NF Group, this event brought together over 1,000 experts, clinicians, researchers, and advocates. The team was honored to reconnect with the global NF community, share insights, and contribute to the progress driving new treatments forward. Several new collaboration opportunities were identified, including potential projects with the amazing NF1 research team from Murdoch Children’s Research Institute in Melbourne, Australia.