Patient Advocacy Summit 2013 Roundup: Calling all Caregivers

October 22, 2013

First Put on Your Own Oxygen Mask
In case of emergency, flight attendants instruct you to put your own oxygen mask on before you try to help your
children or other passengers. A mother might think, “They can’t tell me what to do. I’d put the masks on my
children first.” But how much help could this mother offer her children if she passed out while trying to put their
masks on? This session will explore the psycho/social aspects of caregiving and provide resources, ideas, and
practical advice on how to strike a balance between caring for others and caring for you.

2013: Caregiving: First Put on Your Own Oxygen Mask from Global Genes | RARE Project on Vimeo.

Moderator: Jane Meier Hamilton, MSN, RN – Partners on the Path

Donna Appell
Donna is the President and Founder of the Hermansky-Pudlak Syndrome (HPS) Network.  Graduated Magna Cum Laude, awarded the Veritas Medal for Outstanding Alumni and employed for 22 years as a registered nurse in an open heart intensive care unit, she claims her most profound education generated from her daughter Ashley, who has HPS. In 2002, Ms.
Appell was appointed to the American Thoracic Society’s (ATS) Public Advisory Roundtable.

She received The ATS Public Service Award in 2003. In May 2007, she was appointed to a two year term as the Chairperson of the ATS Public Advisory Roundtable and, upon completion, received three awards from the ATS, including the “Presidential Commendation.” She is a Director and Scientific Advisor for the National Organization of Albinism and Hypopigmentation
and received its first Founder’s Award. In 2013, together she and her daughter were chosen as one of 30 Heroes in celebration of the 30th Anniversary of the Orphan Drug Act by NORD and the Office of Orphan Product Development at the FDA. Her work in advocating for families with special needs children spans two decades and has been covered in Parade Magazine, The New York Times, Women’s Day Magazine, Family Circle Magazine and Parenting Magazine.

Mindy Cameron – Director, Parent Project Muscular Dystrophy


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