First, you are not alone. Though Duchenne is categorized as “rare” there is a huge active global community at your fingertips fighting day and night to end Duchenne. We want you to know everything that is available, but we suggest you enter into it at your own pace and comfort level.
Find a family in your state
Online interactions are great, but nothing can replace in-person connections with other families living with Duchenne. PPMD has local Connect groups all over the country for this very reason.
Previously known as FACES, these groups serve many functions, but primarily exist to help you along this journey. Reaching out to your local group will let them know that you are there. Maybe you don’t want anything, or maybe you just want to “listen” for awhile — that’s ok.
No one needs to go through this experience alone. Finding one or two families to connect with will help you to know that there is hope and that you have support whenever you need it.Find a Local PPMD Connect Group
Join an online community
PPMD Community Forum
PPMD’s Community Forum allows families all over the world to connect with each other to chat, organize, and share stories, news, and information.Join the Community Forum
PPMD on Facebook
The Parent Project Muscular Dystrophy Facebook page is great place to get daily Duchenne update on research and care and community. Facebook also has a large number of active groups in the Duchenne community. A simple search under “Duchenne” and you will find a large list of them. You will need to be advised that most of these groups are independently monitored and depending on your level of comfort you might want to avoid over saturation.Connect with PPMD on Facebook
Apply for PPMD’s Annual Conference Newly Diagnosed Program
Parent Project Muscular Dystrophy’s Annual Conference is a unique convergence of industry partners, scientific leaders, medical providers, people living with Duchenne, and their families. This exceptional meeting has grown to be recognized worldwide as the foremost Duchenne muscular dystrophy meeting. But more than that, it is a way for families affected by Duchenne to connect with each other. To build support networks. To realize no one is on their own in the fight to end Duchenne. Each year, PPMD allows up to 30 newly diagnosed families to come to Conference for free. For some families the diagnosis is still too raw for them to attend a meeting such as this, but for a large majority of families they are glad they decided to attend. The community will be there for you, to you hold you up when you need it. Visit our conference application page to apply today.Learn about PPMD’s Annual Conference
Attend an End Duchenne Tour Meeting
In addition to the Annual Conference, Parent Project Muscular Dystrophy heads a community engagement initiative called the End Duchenne Tour. Our goal is to reach all regions of the country by bringing this program to new cities each calendar year.
Combining each of the pillars that make up PPMD’s mission, the End Duchenne Tour brings updates on research, advocacy, and care with each event. This is also an opportunity to connect with local families and, when possible, explore your area’s Certified Duchenne Care Centers.See our current list of End Duchenne tour stops
Supporting Yourself & Relationships
You are probably feeling confused, angry, and scared — amongst other emotions. Please use PPMD’s resources to help you get through this difficult time, when you are adjusting and learning about Duchenne. If you don’t have the right resources, talk to us and talk to your doctor. We can help you get the support you need, which won’t “fix it” but will help you adjust.
Remember that you and your family members may adjust differently to the diagnosis. Many times acute grief reactions occur, that may last from several months to a year or longer. The experience typically includes overwhelming emotions of shock, denial or suspicion, despair, anger, sadness/depression, anxiety, and guilt. Family members may experience this at different rates, resulting in conflict. Keep communication honest and open and understand that adjusting to the diagnosis can be different for each member of the family.
Resources that may help:
- Marriage and Relationships (download)
Presentation by Dr. James Poysky
- Karen’s Journey: Essential First Steps (video)
Karen’s Journey is a fictional profile of a young woman whose son Thomas has recently been diagnosed with Duchenne. It goes through important initial steps following the diagnosis of Duchenne. Though the story is based on a mother this video is for both fathers and mothers.
PPMD can connect you or your family with a mentor that can speak with you about adjusting to the diagnosis. Please contact Ryan Fischer at firstname.lastname@example.org.
Supporting Your Children
What you say to your child depends on their ages and levels of understanding. You know your children best. That includes their siblings.
Even young children sense when something is wrong. Silence is rarely comforting in difficult situations. It implies the illness is too horrible to talk about and that it is inappropriate to discuss illness and feelings. Children are better able to cope with a situation if they feel they understand it. The following resources can help you get these often-difficult conversations started.
Resources that may help:
- Talking about Duchenne with your child (download)
This presentation is by Dr. James Poysky, a clinical psychologist and pediatric neuro-psychologist who specializes in the impact that neurological and neuromuscular conditions can have on brain functioning, including behavior, learning, and emotional adjustment. Most importantly, Dr. Poysky is the father of Joel, who has Duchenne.
- DMD and Me (download)
This lovely children’s story was written by Sue Nuenke and her son, Christopher. Their goal was to create a short story that would help young children understand what was happening with their muscles and to help them cope with being unique and special.