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PPMD’s #EverySingleOne Tour: Albuquerque, NM

On November 4, PPMD had the pleasure of working with the parents and providers of New Mexico to present our final Every Single One Tour stop of 2017 (click here for a preview of our 2018 Tour schedule).  We had the pleasure of meeting Monika Swinarska, the new and wonderful PM&R physician who will direct the pediatric and adult neuromuscular center at the University of new Mexico Health Sciences Center, as well as her team, nurse coordinators Eddie Baldlinger and Carmellla Martinez. 

 

With an intimate group of 20 parents, we were delighted to be able to start with introductions all around. As many of the parents had not met Dr. Swinarska, and most did not know each other, this was a wonderful start to the day! I covered cardiac and endocrine care (growth, puberty and bone health) (download PDF).

  • Start seeing a cardiologist from diagnosis
  • Be sure your child starts cardiac medications when there is evidence of fibrosis or dysfunction on the MRI or echo, or by age 10 if everything is normal
  • Make sure meals are healthy with lots of calcium and vitamin D
  • Get regular spinal x-rays and DEXA scans to be sure the spine and bones are healthy

  

Dr. Swinarska reviewed steroids, their history, what we know about steroids and the current recommendations for taking them (download):

  • If you are taking daily steroids, do not miss doses for more than 24 hours
  • If there is an emergency or you have missed doses for more than 24 yours, make sure you have the PJ Nicholoff Steroid Protocol to help your local medical providers care for you/your child
  • It is safe to take live virus vaccines if you are taking less than 20mg of steroids per day. GET YOUR FLU VACCINES!

 

Oren Kupfer joined us to discuss pulmonary care (download):

  • See your pulmonologist and have your breathing checked at least once a year from diagnosis
  • It is very important to clear your airway!!  Have your cough checked when your breathing is checked and use assisted cough if you need it – this will keep your lungs health and help prevent pneumonia
  • Be sure to tell your pulmonologist if you have problems waking up a lot at night, wake up with headaches (even if they go away) or feel very tired during the day.  All of these may be signs that you are not getting enough oxygen at night and may need a sleep study.

  

Dr. Sue Apkon from Seattle Children’s talked about all of the exciting research going on in Duchenne (download), including:

  • Gene therapy
  • CRISPR
  • utrophin regulation
  • inflammation management
  • and more! 

 

Leslie Vogel, the amazing Seattle Children’s PT, had parents running through the paces of stretching and bracing (download):

  • Be sure your child is supported, his body is straight and in a good position
  • Stretch every muscle at least once a day, for at least 20  minutes
  • Hold those stretches for 30 seconds each and only to the point of resistance – never cause pain!!

 

Jen Ely, genetic counselor with PPMD's DuchenneConnect Registry, explained all about deletions, duplication, stop codons, and carriers (download):

  • Register and update your profiles in DuchenneConnect
  • Let PPMD know if you need genetic testing – we can help with Decode Duchenne
  • Contact DuchenneConnect if you had ANY genetic testing questions

  

Throughout the day the audience heard from our incredible list of industry partners developing potential therapies for Duchenne. Participants included:

 

Thanks to all of the families and presenters for spending their Saturday with us. We had a wonderful time, meeting new faces and seeing some that we love but don't get to see often enough.   

About PPMD's Every Single One Tour


Combining each of the pillars that make up PPMD’s mission, the Every Single One Tour brings updates on research, advocacy, and care to families across the country, featuring a roster of leading experts in the Duchenne space. This is also an opportunity to connect with local families and, when possible, explore your area Certified Duchenne Care Center. As always, each meeting is free with breakfast and lunch provided. Kids are also welcome to attend and participate in PPMD’s Kids Track.

2018 stops*:

  • New York / New Jersey Metro - Winter 2018
  • Grand Rapids, MI - Spring 2018
  • Minneapolis, MN - Spring 2018
  • Birmingham, AL - Spring 2018
  • Billings, MT - Fall 2018
  • Dallas, TX - Fall 2018
  • San Francisco Bay Area, CA - Fall 2018
  • Cincinnati, OH - Fall 2018


* Specific dates and locations for our 2018 visits will be added to our website over the coming weeks.

View PPMD's tour schedule & find a stop near you!

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