Voice of The Patient

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Date/Time
Date(s) - 8 Oct 2021
10:00 AM - 11:00 AM

Location


Patients are the reason we do what we do. 

Join us for a conversation on life science innovation from the patient perspective.  

To protect the heath of both our patient presenters and guests, this event will be presented via Zoom.  Instructions on how to access the event will be provided to registered attendees. 

Friday, October 8, 2021

10 AM –  11 AM

Delivered via Zoom

REGISTER

There is no cost for Attendee Registration. For more information on supporting partner opportunities, please see below.

Agenda 

Produced in partnership with Arizona’s patient advocacy community, Voice of the Patient will bring together people who are living with acute and chronic health challenges to share their life experiences with life science and healthcare leaders.  All speakers at Voice of the Patient will be patients  and patient advocates as they share their experiences and what they need from us in the future.


10:00 AM  Program Begins *

11:00  AM  Program Concludes

Discussion Moderator: Renae Moomjian, Acacia Consultants

Patient Testimony and Panel:

  • Greg Garcia went up a mountain planning to ski down with this family. That is not exactly how it worked out. Hear about Greg’s experience with Myocarditis and his journey back to health.
  • Rachael Castillo is living with Nephrotic Syndrome, which  is a disease that effects the kidneys. Unfortunately I was misdiagnosed with lupus so did not receive proper treatment for my condition for 15 years. Advanced stages of Nephrotic Syndrome, which is what I have, resulted in a kidney transplant in 2018.
  • Michelle Lott lives with two chronic diseases.  Cervical dystonia, which is a rare neurological disorder, and hypermobility which is common however frequently mis-diagnosed.  These two conditions exacerbate each other.  
  • Matthew Nelson, first and foremost, is a father to two wonderful daughters and a husband to a fantastically talented wife. Throughout his career, Matt has held roles in the support of science, mostly in the neuroscience field and as luck would have it, has worked at Barrow Neurological Institute as a research operation manager for last 11 years. In February of 2016, Matt came home with facial numbness and didn’t think much of it. After a visit to urgent care, the ER a neurologist and finally an MRI, he was diagnosed with relapse remitting MS. He has been on disease modifying therapy ever since. This therapy is designed to inhibit my immune cells that are thought to target the neuronal myelin, from leaving the lymphatic system.
  • Julie Hoffman is her daughter’s #1 fan and an active patient advocate helping to navigate the challenging journey of living with autoimmune diseases.
  • Pat Elliott is a two time cancer survivor, at age 35 she was treated via traditional treatment for breast cancer at a time when it wasn’t discussed in public and there was little patient support. In 2009 she was diagnosed with a rare cancer, Chronic Myeloid Leukemia, which used to be a death sentence for most patients. She was treated with an oral targeted therapy which was the fastest drug ever approved by the FDA and is considered by many as the closest thing we have to a cure for cancer.Today, thanks to technology, Pat has a global support network that includes patients and physicians around the world and can immediately access clinical research to stay on top of her condition. 
  • In 1991, Lee Stein was diagnosed with a Brain Aneurysm which bled.  It was inoperable as it was diagnosed to have clotted between the MRI and the angiogram. The radiology was deemed so unusual that his case was published in The Journal of Surgical Radiolgy in 1997.  The authors were the chief of Radiology and the Chief of Neurology and the selected neuro surgeon.  But, did they get it right?  Lee founded a medical device company that uses AI to diagnose postural abnormalities. He lives in San Diego, serves on many boards and is the former attorney for Richard Branson. His website is www. Stein.to

 

Note:  The Zoom platform will remain open following the program as needed to address Audience  Questions submitted in the chat during the program.

*Live Stream  via Zoom 

 


Thank you to our supporting partner organizations

 

Please contact AZBio For more information on sponsor benefits.