Family Friday: Navigating Your Neuromuscular Team

For many of us, self-quarantine is in full swing, and adjusting to a different family structure may be overwhelming. So your PPMD family is launching Family Fridays to discuss topics that impact the entire family and solutions that we hope will help you make the most out of your time together while maintaining your sanity – including some ways that our whole Duchenne family can find some fun ways to stay as active as possible while also making sure that the fight to end Duchenne remains strong.

Watch the Recording

During our June 19, 2020 Family Friday on Facebook Live, we discussed ways to facilitate and build relationships with your neuromuscular team. We were joined by Gretchen Egner and Alpa Khushalani, parents, and Colin Werth, an adult living with Duchenne, to hear about their experiences navigating healthcare.

RESOURCES MENTIONED

PPMD’s VIRTUAL CONFERENCE

Don’t forget to join PPMD’s Virtual Annual Conference, July 22nd – 25th, where we’ll be featuring a variety of Care Panels, including:

• COVID-19 and Re-Entry: Where Are We Now?
• Building Resilience: Overcoming Compassion Fatigue and Burnout
• Duchenne Care: Endocrinology in Duchenne (Bone Health, Growth & Puberty)
• Duchenne Care: Acute Pulmonary Management
• Duchenne Care: Caring for Carriers
• Duchenne Care: The Role of Physical Medicine & Rehabilitation (PM&R) in Neuromuscular Care
• Rescuing the Heart: Why Cardiac intervention is So Critical
• Teen & Adult Track: Care Session

REGISTER

NEW! Care Considerations Checklists

4 Versions available for each stage of progression:

• Early Ambulatory/Childhood
• Early Non-Ambulatory
• Late Ambulatory Stage
• Late Non-Ambulatory Stage

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PPMD Care & Support Materials

Additional PPMD Care & Support Materials can be found at here.

JOIN OUR NEXT FAMILY FRIDAY!

Join PPMD for our next Family Friday on Friday, June 26 at 12 PM ET on Facebook Live.