This year’s Annual Connect Conference in Ft. Lauderdale was incredibly informative, comprehensive, and included the leaders of the Duchenne fight. In the coming weeks, we will be providing links to presentations (both PowerPoint slides and downloadable podcasts, when possible) from the Conference. In the meantime, we wanted to share some of the great resources that made their ‘debut’ this year.
Consider downloading and printing copies of these documents to have on hand and to give to your child’s physicians as you see fit. Remember, in Duchenne especially, knowledge is power.
PPMD is pleased to provide the following care sheets, adapted from the CDC Care Considerations guidelines published in Lancet in 2009. The care sheets have been updated and vetted in order to highlight specific areas of care for the use of Families and Care providers. Topics include cardiac care, pulmonary care, and psychosocial behavior. These forms will be updated over time to reflect the most updated care recommendations.
Endocrine Information Sheets
In 2011 PPMD convened two meetings on Endocrine issues in Duchenne. The purpose of these meetings was to engage with experts and develop information sheets related to endocrine issues that parents and their sons might use with their physicians to encourage (or insist) upon a referral to an Endocrinologist. The final result was the following sheets that parents can use to discuss with their son's physician: puberty, short stature, bone health, and weight gain.
Closing Night Dinner
Another highlight of the Conference was Luca Buccella’s moving speech at the closing night dinner on Saturday. Son of Filippo Buccella, the President of Parent Project Italy and a friend of PPMD’s for years, Luca inspired us and made us laugh. Watch his speech and read a transcript.
Will Nolan, Communications Director
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