Patients and Doctors share insights

From the desk of Jorge D Faccinetti, cofounder – One word describes this conference: FUN!  The National and International Canadian conference this past September in Toronto, Canada, was not only a good time, but it was also a positive, engaging, interactive, and educational event.

The presentations were informational and by all accounts very helpful to a large group of acromegaly patients and their families who gather every two years to catch up, exchange ideas, and learn a few things. Our kudos to the organizers, The Vancouver Acromegaly Support Group leaders Deanna Badiuk, Pieter Dorsman; Peggy McDonald from the Atlantic Acromegaly Support Group, the contributors: Pfizer, Ipsen, Novartis, Crinetics, Ionis, Chiasma, the Royal Canadian Legion, and all the speakers, attendees, and supporters.

Dr. Sylvia Asa, MD, PHD

The medical presentations ranged from scientific to clinical.  Dr. Shrereen Ezzat talked about the acromegaly registry in Canada, Dr. Imran provided a comprehensive look at the pituitary gland and its function, Dr. Sylvia Aza discussed the pathology of tumors and a fascinating look at the importance of granules, and Dr. Prebtani reviewed type 2 diabetes issues with acromegaly.

Chris Summerville, D.Min, CPRRP, LL.D (Honorary)

Chris Summerville, a mental health expert, used his personal experiences in an amusing and at the same time compelling presentation about the issues associated with depression and acromegaly. Following, I presented some ideas on how to work effectively with Pituitary World News to help increase awareness and cut the time to diagnosis, a key objective for all present.  And Mark Logtenberg, arborist, patient advocate, and character actor gave us a very funny and entertaining look at living with acromegaly.

The second day of presentations included great talks from Endocrine nurse Lori Kingdon who provided a comprehensive perspective of the role of the nurse in the treatment of acromegaly patients, and Daphne Adelman, Clinical Nurse Specialist who very eloquently talked about understanding the patient perspective.  Jill Sisco, president of Acromegaly Community, based in the US, gave us a brief look at some key projects currently under development, and Jack Bondy,  a clinical research coordinator, closed the Sunday session with a look at the ins and outs of drug development trials.

Deanna Badiuk announced the creation of Acromegaly Canada, a move that unifies all of the different support groups in the various Canadian provinces under one organizing entity. We look forward to learning more about this new organization and wish them all the success in the world!

And please stay tuned for the videos of these presentations, which will be available shortly.

 

Inspired Photography by Santino Matrundola

 

 

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