N-Lorem Foundation

05/27/2026

100+ registrations in under 24 hours! 🚨

The excitement for the 2026 n-Lorem Nano-rare Patient Colloquium is already building. Join us October 7-8 at the Boston Marriott Cambridge or virtually for two days of powerful conversations, community, and collaboration focused on nano-rare disease.

Register now: https://www.nlorem.org/nano-rare-patient-colloquium-2026/

05/27/2026

🧬 What exactly does RNA do inside our cells?  

In Part 2 of the n-Lorem Patient Empowerment Program podcast Miracles of Science series on RNA, Dr. Stan Crooke further explores the fascinating “RNA world” — diving into how RNA molecules are processed, protected, modified, and used to manage cellular function.  

This episode covers:  
✔ Pre-RNAs & RNA processing  
✔ Poly-A tails & 5’ caps  
✔ RNA splicing  
✔ RNA structure & chemical modification codes  
✔ Why RNA is critical for antisense therapies  

A detailed look at the miracle known as the RNA World and the science helping drive personalized treatments for nano-rare patients.

Link in bio!

05/27/2026

This is Turner 💙

Turner is a joyful teenager living with KIF1A Associated Neurological Disorder (KAND), a rare condition that brings daily challenges.

He meets each day with laughter, love, and a spirit that uplifts everyone around him. We celebrate Turner, his mom Jenni, and the family who support him every step of the way.

Donate today: https://www.nlorem.org/donate/

05/26/2026

The n-Lorem 2026 Nano-rare Patient Colloquium dates are set and registration is NOW OPEN! We’re excited to once again bring together the nano-rare community for two full days of important conversations, collaboration, and connection.

📅 October 7–8, 2026
📍 Boston Marriott Cambridge
📌 Cambridge, MA
🤝 Hosted by Biogen

Register today and stay tuned for agenda details: https://www.nlorem.org/nano-rare-patient-colloquium-2026/

05/25/2026

This Memorial Day, we pause to honor and remember the brave men and women who made the ultimate sacrifice for our country.

Today also reminds us of the strength, resilience, and courage shown every day by nano-rare patients and their families as they face battles few can see.

At n-Lorem Foundation, we are honored to stand beside these families in the fight for hope, treatment, and time.

Wishing everyone a meaningful and reflective Memorial Day!

05/22/2026

May is ALS Awareness Month.

Amyotrophic Lateral Sclerosis (ALS) is a progressive neurological disease that affects the nerve cells responsible for controlling muscle movement. Over time, it can impact a person's ability to move, speak, eat, and breathe.

This month is an opportunity to raise awareness, support the ALS community, and recognize the ongoing research aimed at better understanding and treating this disease.

05/20/2026

🧬 What if scientific “wars” helped create life-saving medicines?
In the latest episode of the n-Lorem Patient Empowerment Podcast, Stan Crooke dives into the fascinating world of RNA biology, the battles that shaped modern genetic medicine, and how those discoveries are now bringing hope to nano-rare patients.

🎧 Listen now to learn how decades of scientific persistence led to breakthroughs like antisense therapy and changed the future of rare disease treatment.

👉 Tune in, share the episode, and help spread awareness for nano-rare families.

Listen to the full episode: https://www.youtube.com/watch?v=z58wKiN2WgE

05/11/2026

In May we recognize TUBB4A Awareness Month💙

TUBB4A-related leukodystrophy disorders are rare genetic conditions that affect the brain’s white matter, disrupting myelin sheath development. Symptoms can vary widely and may include delayed motor development, difficulties with coordination and balance, involuntary muscle contractions and a range of other neurological symptoms, affect the brain and nervous system. These conditions can impact movement, development, and coordination.

05/06/2026

Join n-Lorem CEO Stan Crooke and Callan Pleasant for a heartfelt conversation about raising a child with a nano rare disease.

Callan shares Layken’s journey with HNRNPH2 from early concerns to diagnosis, daily challenges, and finding hope through treatment.

Listen now!
https://www.youtube.com/watch?v=f6jk3zzr1vw

05/06/2026

Missed this joint Integrated DNA Technologies and n-Lorem Foundation webinar? You can now watch it ON-DEMAND! https://go.idtdna.com/A*O-screening.html

Learn why high throughput A*O screening is essential for developing effective therapies for nano-rare diseases, how n-Lorem uses large-scale, data driven screening to design and optimize individualized A*O treatments and more!

TOMORROW! Join us for a joint webinar with Principal Scientist Kim Lennox, MSc, and n-Lorem’s Assistant Director of A*O Strategy Research, Anthony Vu, PhD, as they explore antisense oligonucleotides (A*Os).

How to join:
Register here: https://go.idtdna.com/A*O-screening.html