Why Should I Attend a Jett Foundation Family Workshop?

October 31, 2023

Why should I attend a Family Workshop?

This is an excellent question, and one that I always ask myself before attending. 

As background my family has been part of the Duchenne community for almost two years. In that time we have attended three local workshops and two annual conferences provided by three organizations. This allows for perspective on what is on offer and relative value. My experience is that local workshops provide greater benefit to the family with easier access than the national conferences.

We all are so busy within our own families and even busier with Duchenne in our lives.  It is hard to make time and funds available to attend these events. But, if you do, you will find the day and the relationships that are formed to be hugely rewarding. Not only will you enjoy the day, but your children will as well.  It is a great opportunity to bring extended family and interested friends along so that they can learn about Duchenne.

This is what I have gained from local workshops:

  1. Relationships with other Duchenne families in the community.  We have shared needs.  It is useful to exchange knowledge on how to meet those.   
  2. Many workshops will involve local clinicians.  This is an opportunity to learn from your son’s doctor(s) far beyond what would be learned in a clinic visit.
  3. Learning about treatments in development.  The pharmaceutical companies will send representatives to discuss their products and development plans.  It is likely that young men who are participating in clinical studies will be in attendance where you can learn from their families. 
  4. An opportunity to provide feedback to the pharma companies.  Their representatives are there to answer your questions and report up the chain. 
  5. Creating relationships for your children with and without Duchenne.  This is an opportunity for the young men and siblings to spend time together, share their experiences and get to know each other. 
  6. An opportunity to ask questions.  The attendees and presenters will have a huge breadth of knowledge.  Please ask any questions you may have.  Others are likely wondering the same.
  7. Understanding and empathy.  Every parent in the room is affected by Duchenne.  You will meet people who can provide support when you need it.

In summary, not only would I encourage you to make time to attend but I would also encourage you to organize local events just for parents.  Communication amongst our families can help us help our sons live the best life that they can. If you need help getting there please ask.  Most organizations have assistance programs.

Written by:
Bruce Ward
A Duchenne Dad

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