MyFSHD and Peter & Takako Jones’ Lab are opening up a new approach in the field of FSHD:Patient-centered, combining in-depth education with advanced, accessible and globalized testing technology. The companionship of FSHD Vietnam helps bring these advances closer to the domestic community, contributing to building an understanding - proactive - connected ecosystem for FSHD patients in Vietnam.

In the future, these efforts are expected to not only improve diagnosis but also promote the development of effective therapies, bringing new hope to the FSHD community worldwide.

MyFSHD and Peter & Takako Jones’ Lab: Global pioneer in research and expanding access to genetic and epigenetic testing for facial–shoulder–arm dystrophy (FSHD).

In the context that Facioscapulohumeral Muscular Dystrophy (FSHD) is still a slowly progressive genetic disease with no complete cure, improving accurate diagnostic capacity, access to testing and understanding the pathogenesis play a key role in disease management and therapy development. On a global scale,MyFSHDalong withPeter & Takako Jones' Labat the University of Nevada, Reno (USA) is one of the scientific and educational initiatives with profound influence in this field.

MyFSHD: Personalized education and connection platform for people with FSHD

MyFSHD is a groundbreaking patient support and information platform, built with the goal of helping patients, families and the medical community better understand FSHD. Unlike many traditional organizations, MyFSHD does not operate on a fundraising model but focuses entirely on fundraisingeducation, information transparency and patient empowerment.

Here, users can access an in-depth knowledge system including:

• Genetics, epigenetics and pathogenesis of FSHD
• FSHD classification (FSHD1, FSHD2)
• Important but often overlooked clinical features
• Update research and treatment development directions
• Guide to understanding and interpreting individual test results

In particular, MyFSHD provides a personalized approach model:connects participants directly to a research laboratory performing DNA analysis from saliva samples, and at the same time support interpretation of results in an easy-to-understand way, helping patients be more proactive in monitoring and managing their condition.

Peter & Takako Jones’ Lab: Innovating FSHD testing based on epigenetic technology from saliva samples

The heart of this initiative isPeter & Takako Jones' Lab, a FSHD research laboratory affiliated with the University of Nevada, Reno. Led by Dr. Peter Jones and Dr. Takako Jones, the lab is implementing a global research project to improve diagnostic methods for FSHD.

Currently, traditional FSHD genetic testing often:

• Technically complex
• High cost
• Request a blood draw and formal medical procedures

Jones’ Lab is developing onealternative testing method based on DNA from saliva, with outstanding advantages:

• Non-invasive(no blood needed)
• Costs are significantly lower
• Can be done at home, globally
• Ensure privacy and information security

This technology allows the identification of characteristic epigenetic markers associated with FSHD, thereby effectively distinguishing betweenFSHD type 1 (FSHD1)andFSHD type 2 (FSHD2). Initial results show that the method is highly accurate in identifying two main disease types.

Research participants can choose to receive results, thereby better understanding the genetic and epigenetic characteristics of their own FSHD-related gene region. At the same time, the (anonymized) data will contribute to international scientific publications to promote progress in diagnosis and treatment.

Global access – No cost – Absolute security

Some of the highlights of this initiative are:

• Completely freefor participants
• Expand globally, including Vietnam
• You can participate at home through a kit sent by mail
• Applies to both people who have been diagnosed, suspected of having the disease, people at genetic risk, and even healthy relatives

Confidentiality is top priority: research results are private and confidential informationdoes not become part of your personal medical record.

FSHD Vietnam: A bridge to bring international science to the domestic community

In that context,FSHD VietnamActing as a connecting representative between MyFSHD, Jones' Lab and the patient-expert community in Vietnam. Through communication, education and research testing registration support, FSHD Vietnam contributes to:

• Raise awareness of FSHD in the community and health system
• Helping Vietnamese patients access international scientific advances
• Support for registration and participation in global research testing programs
• Promote collaboration between patients – doctors – researchers

This connection not only provides opportunities to access advanced technology but also contributes to bringing Vietnamese data into global research, thereby improving representation and scientific value.