News & Articles from Neuromuscular Disease Foundation
May 2025 6SL Update
Dear GNEM/HIBM community,
I hope this message finds you well. The NDF executive team has been diligently researching options for patients to access 6SL from reputable and reasonably priced suppliers. We want to share some significant information we have gathered during this process.
As a non-profit organization, the NDF operates primarily through the voluntary efforts of its members who are dedicated to finding an effective therapy and sharing essential research with our community. It is important to note that there is no financial benefit to any NDF member from this initiative.
Regarding 6SL, we encourage you to explore options available globally and identify which supplement companies offer this product. While baby powdered milk contains 6SL, finding it in its pure form may require some effort. We recommend reaching out to various supplement companies for assistance in sourcing pure 6SL. Keep in mind that prices may vary, especially for high-quality products produced in reputable laboratories (such as in Germany or Denmark). Most pharmaceutical companies in different countries should be familiar with this product, so doing thorough research can yield valuable information.
Consulting with your doctor or pharmacist can also provide guidance in locating this supplement. We urge each of you to invest time and effort into this search and share your findings with fellow patients. By collaborating, we can work towards securing better prices and quality for everyone.
Additionally, be aware of extra expenses such as customs charges that may arise, as we have learned that some countries impose significant charges on products imported from the USA. Shipping complexities can also contribute to higher costs. We recognize that the price of 6SL can be a financial burden for many. For instance, a monthly cost of $200 can represent a substantial portion of a patient’s income. We hope that those who are in a stronger financial position may consider supporting fellow patients who are facing financial challenges. In the future, we aim to organize fundraising efforts to assist those in need around the world.
As most of you know, we have patients in over 50 countries with a wide range of financial situations. The NDF’s primary focus is on scientific research to find an effective therapy. I have personally worked to minimize our costs and direct all donations towards our goal of ending this disease. I kindly remind you all to consider supporting the NDF financially so that we can continue our mission.
As this is an orphan disease, fundraising is a significant challenge, and the support of you and your families is crucial. Rest assured, we operate with minimal overhead to maximize the impact of every dollar received. We are committed to our mission, especially since there is no government funding available. We rely entirely on donations, and our goal is to provide comprehensive support and information for patients, particularly those newly diagnosed.
Thank you for allowing me the opportunity to contribute to our community’s efforts to find an effective therapy. This work is incredibly rewarding, and every positive step we take brings joy to my life. As a businessman, I can assure you that helping this community is far more fulfilling than chasing monetary success.
Warm regards,
David Haverim
Using Her Rare Disease Diagnosis to Fuel Patient Advocacy – Tara Voogel Steps into Her Role on The Board of The Neuromuscular Disease Foundation
"To be kind, compassionate, and of service so I may not... be ashamed to die until I have won some victory for humanity." - [...]
Rare Disease Day 2023: A Celebration of The Promise for a More Equitable Society
Each year at the NDF, we take part in celebrating Rare Disease Day, an opportunity to advocate for rare diseases as a human rights [...]
‘I live a beautiful life’: What wheelchair users wish you knew – and what to stop asking
"What's wrong with you?" "How did this happen?" People in wheelchairs encounter those questions regularly – and want people to know they are not OK to [...]
Neuromuscular Disease Foundation’s Dr. Kelly Crowe Presented with $20,000 Research Grant from Uplifting Athletes
Dr. Kelly Crowe is among 10 rare disease researchers to be awarded a grant at Uplifting Athletes’ Sixth Annual Young Investigator Draft presented by [...]
NDF’s Secret Weapon in Raising GNEM Awareness Is a Team of Motivated Young Professionals Who Are Leading the Way to A Healthier Tomorrow Through Genetic Screening Advocacy
The community of GNEM (GNE Myopathy) patients and families we are happy to support at NDF have long understood the unique challenges of advancing [...]
Accessibility: Where are we still falling short? Where can accommodations for disabled persons be improved?
“Staff were huffing and puffing whilst I held up their all-important drinks cart and told me that ‘in 27 years of working on airlines, [...]
The Beverly Hills Rotary Club Renewed its Support of The Neuromuscular Disease Foundation
On Monday, September 30, 2022, NDF’s Executive Director Geoffrey Gee, and NDF’s Emotional Wellness Director Carol Gelbard were invited to The Beverly Hills Hotel [...]
Rich Horgan Talks Gene Therapy, How He Feels about Egos in the Lab, and Guiding NDF to the Head of the Pack in Developing a Cure for GNEM
In 2020, The Neuromuscular Disease Foundation made history when it announced an ambitious plan to achieve the IND (Investigational New Drug) approval stage of [...]
NDF’s Research Program (IGTDP) Moves Closer to a Cure for GNE Myopathy (GNEM)
In 2020, The Neuromuscular Disease Foundation (NDF), a Beverly Hills based non-profit in order to advance research to end the muscle wasting disease, began [...]
Family Planning? Have You Considered Genetic Screening?
For individuals whose families carry genetic diseases such as GNE Myopathy (GNEM), genetic screening is the best-known tool for increased awareness among carriers of [...]
