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July 13, 2014 at 1:59 pm #22095
The loss of Patricia – known to many as Pati – is unfathomable. To be taken from her young children and those of us who loved her dearly is clearly unfair. Pati knew life was unfair. She knew she wasn’t alone having a life threatening illness, facing barriers to new and promising therapies. Her zeal to help others in her shoes was unstoppable only by the progression of her own illness.
She made both parliament and large pharmaceutical companies uncomfortable with her queries. She took on doctors with huge egos and brought them around to the patient viewpoint. She was after-all an expert on organizational behavior.
She made great strides in her short lifetime to trail blaze an easier path for patient access. She always reminded me “the patient must be at the center of all endeavors!” Although she’d say she learned that from me and my work, in fact it was Pati who reinforced that for me.
Our loss of Pati is cushioned only by the comforting thought that she no longer is feeling pain, physical or psychological. My work as a patient advocate is forever changed from Pati’s influence. I had the disease, and have lost many special people to melanoma. But this time I lost a kindred spirit. Pati will remain alive in my heart spurring me on to advocate for the patients struggling for access to care for as long as I am able.
We lost Pati a year ago, July 2nd. But she remains alive in all of our hearts.July 13, 2014 at 2:47 pm #64983BNP68Participant
Thanks for reminding us of Pati’s legacy and thanks for all you do for keeping alive her dream of curing this awful disease.
BrianJuly 13, 2014 at 5:11 pm #64984
Thanks! She truly remains an inspiration. Here is one of her videos where she spoke to researchers:July 13, 2014 at 11:06 pm #64985LesliParticipant Dear Catherine,
I am so sorry for the loss of your friend and for our community’s advocate. She was vital and articulate and generous with her resources (mostly her smart brain!) and like so many people in treatment for Melanoma, her struggle should not be considered to be in vain. Thanks to this resource, MIF, people in treatment for Melanoma can be better self advocates and communicators and active participants with their medical team. One of the most helpful aspects of this forum is that through people I meet here, I can learn about the latest strategies that the top Melanoma experts are employing around the world via the patients and share those with my oncologist. He is aware of some of them, but not all of them. In addition, the behind the scenes work that you do on behalf of all patients is making a difference. A very meaningful difference. Thank you for providing a forum that has provided so many with important (vetted) information and that also brings us comfort during some trying times.July 13, 2014 at 11:43 pm #64986
Thank you so much for your kind words Lesli.July 14, 2014 at 2:16 am #64987AnnieoParticipant I am so sorry for your loss Catherine.
I have watched the video clip above and found it to be both inspiring and moving. I am a frustrated Stage IV ‘Watching and Waiting’ patient – Patsi’s clip reminded me that I really need to start questioning this plan once again.
Patsi and her young family are in my thoughts. I have no doubt that she touched the hearts and lives of many.
AnneJuly 15, 2014 at 5:36 pm #64988RJoeyBParticipant
Inspirational Catherine. I’m new to this forum but unfortunately not new to melanoma and didn’t know Pati’s story, but have been reading some posts now. Thanks for sharing and letting us know her story.
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