We’re Bringing Unprecedented Scientific Advancements & Remarkable Progress toward Globally Accessible GNEM Therapies into 2025. At the Forefront of the Pre-IND race, We’re Inviting GNEM Patients on a Holistic Journey.
As the Holiday season descends, we are thrilled to share exciting news with our global GNEM community. We continue to lead the Pre-IND race to procure the world’s first-ever viable gene therapy for GNEM. Thanks to a generous NDF donor, we are paving the way to every GNEM patient around the world having access to new treatments. We are driven to enrich the lives of GNEM patients of all backgrounds and nationalities, and to deliver a therapy that will address all genetic mutations and variations of this disease. No patient left behind! As we look ahead to a future full of so much promise, these achievements inspire us to forge ahead with greater certainty in what we can accomplish when we come together and create with intention.
A few recent scientific benchmarks we’re proud to announce include: We submitted our pre-IND (Investigational New Drug) to the FDA as of mid-November. We are committed to developing the world’s first effective gene therapy for GNEM. Additionally, we coordinated with a company to market 6SL (6′-Sialyllactose) to patients. Our fundraising efforts will help bridge the economic gap to help make this therapy accessible to patients from the U.S. to developing countries. Thanks to a generous gift from an anonymous NDF donor, a large enough volume of 6SL was purchased from a European supplier, so that the lowest price possible for 6SL will be made available to patients. This is a massive victory in the fight against GNEM. Having submitted the pre-IND, we anticipate feedback from the FDA soon.
As the world’s largest organization operating in service of GNEM patients, we strive to address every aspect of patients’ lives. Through scientific and medical advancements, community enrichment and public education, and by viewing each patient through a holistic lens. With every scientific goal post we reach, we are equally excited to reveal deeper pathways of healing to patients. Some are healing modalities fully backed by science and proven by research, which can provide guidance, comfort and physical progress on your GNEM journey. Many of us begin our GNEM experience in fear, intimidation, or diagnosis paralysis. Let’s move beyond that. We want to invite you on a different, more empowering path.
“Each GNEM patient has a gift that they could share with others,” says NDF Director, David Haverim. Haverim began under the tutelage of renowned healer Louise Hay. Hay’s work is a treasure trove of somatic wisdom demonstrating that to heal, we must look within. “I would see her patients come in looking horribly sick,” Haverim recalls. They would spend a weekend working with her, and – I would see them the following Monday. They’d look like a different person. I wondered, “How could they have healed so much in such a short time?” He spent years doing a deep dive into healing modalities, until he reached an understanding that served him. Through activities like meditation or yoga, he observed that stress can be reduced. As science has shown us, perhaps the most critical thing we can do to heal is to reduce or remove stress. In a stress-free state, the body is unburdened of inflammation, and unleashed to perform its function in design: healing itself.
At a recent NDF event, Michael Beckwith of the Agape International Spiritual Center shared insights on tapping into the “flow state”—a harmonious alignment of mind, body, and spirit where creativity and purpose naturally unfold. He emphasized that our core purpose in life is to create. Imagine if every GNEM patient around the world were actively tapping into their most divinely guided gift – the advancements we might reach in bringing an end to GNEM. It is important for patients to know they carry this power of creation. When you are told by a skeptical or inexperienced healthcare worker that you may not walk in a few years, it is our responsibility to balance every piece of input with what we know to be possible as master creators, and to seek out every avenue of healing, whether it be medical, spiritual, or other.
“There is a gift to be given in seeing individuals at the soul level,” Beckwith said to guests. In that esoteric field of energy and manifestation, one can hold space for the whole, healed individual to create a life filled with purpose, unlimited by physical imperfections or maladies. As we move forward on this path to groundbreaking medical treatment, we also invite you to see yourself—and each GNEM patient—not only as someone in need of healing but as a powerful creator. By envisioning each patient as whole and vibrant, we join together to manifest a future free of this disease. This Giving Tuesday, let’s give to the possibility of a world where each individual’s innate power and purpose help bring us closer to an effective therapy. Imagine what we can create together on this journey.
Do you want to help make the world’s first GNEM therapy available to ALL patients and for ALL mutations, worldwide? We’ve taken monumental steps forward in the fight against GNEM: 6SL is on the market, we have submitted the pre-IND for FDA feedback. Let’s keep the momentum going, and help to make 6SL affordable to GNEM patients around the globe!
