Program​​​​​​​​​​​​​​​​

Featured speakers

Workshop topics

1) Living Life to the Fullest

What is daily life like for you with FSHD? What challenges do you encounter? The continuous process of adapting to new circumstances—how do you ensure that you don’t get stuck along the way? Connecting with others who share similar experiences can be a great source of comfort and have a positive impact.

2) Parents with FSHD or having children diagnosed with FSHD

Whether your child has recently been diagnosed or you've been living with FSHD for some time, there are moments when you simply want to speak with someone who truly understands. If you're approaching a new milestone, facing a challenging point in your child's care, or struggling to find the right information or resources, it can be reassuring to connect with another parent who has gone through similar experiences.

3) Energy Self-Management

Managing an energy-driven schedule in a fast-paced world. How do I find balance while overcoming challenges like pain and fatigue? It can be very helpful to talk with others who share similar experiences and exchange insights.

4) Use It or Lose It

Where is the line between too much and too little physical exercise? How do I continue to motivate myself, or my loved one with FSHD, to stay within that healthy balance? This topic will be discussed together with a physical therapist, rehabilitation physician and patient.

5) Family-planning

With the knowledge we have today, the desire to have children as a carrier of FSHD is complicated and never without concern. Under the guidance of experts with lived experience, we will discuss this topic. This session is intended for young adults, but also for parents of young adults.

6) Nutrition and FSHD

Good nutrition can be challenging for individuals living with neuromuscular diseases, many of whom may struggle with physical activity or experience difficulties with eating or swallowing. It's important to ensure proper nutrition to support optimal health and well-being.

7) Empowering Mobility

Assistive technologies, including robotic exoskeletons and orthotics, can greatly improve mobility and independence for individuals with neuromuscular diseases. These innovations help enhance movement and functionality, allowing people to perform everyday tasks more easily.

8) Genetic testing

Genetic testing for FSHD can provide valuable insights into diagnosis, family planning, and understanding the progression of the disease. Knowing when to pursue genetic testing and how to navigate the process is important for individuals and families affected by FSHD. This workshop will explore the reasons for genetic testing, the timing, and the steps involved to help you make informed decisions.

9) Physical Exercise Class (seated)

A perfect opportunity to get some exercise this weekend, led by a physiotherapist from the Muscular Dystrophy Support Center in the UK. After a brief introduction, there will be a seated exercise class focusing on core strength, a range of movement exercises and working your cardiovascular system. No equipment is required.

10) Physical Exercise Class (standing)

A perfect opportunity to get some exercise this weekend, led by a physiotherapist from the Muscular Dystrophy Support Center in the UK. After a brief introduction, there will be a standing exercise class focusing on core strength, balance, range of movement exercises and working your cardiovascular system. No equipment is required.

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