Voice of the Patient

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Date/Time
Date(s) - 29 Sep 2023
9:00 AM - 12:00 PM

Location
Virgina G. Piper Auditorium, U of A BioMedical Campus


 

Patients are the reason we do what we do. 

Join the conversation on life science innovation from the patient perspective. 

Date:  Friday, September 29, 2023

Time:  9:00 AM – 12:00 PM

Location:  Virginia G. Piper Auditorium, University of Arizona College of Medicine – Phoenix

 600 E. Van Buren Street, Phoenix, AZ 85004

 

Registration is complementary but space is limited.

Attendees are responsible for parking fees.

 

Agenda

9:00 AM   Check-in, Networking, Refreshments

10:00 AM Program Begins

  • Welcome – Kevin Lohenry, PhD, PA-C, The University of Arizona
  • Patient Spotlight – Leonard Chayrez and his partner, Mark Garrity
  • My Voice: Patients as Advocates – Clare Cory, PhD, George Galliher, Mark Geiger, and Alex Tessmer (Moderator)
  • Patient Spotlight – Mikaela Emery and Dr. Brad Pasternak
  • From Patient to Physician – Nina Cherian, Natalya Foreman, Arianna Tuomey, Kelly Walter , and Taylor Hoffman (Moderator)
  • Special Guest: Representative Amish Shah, MD, Co-chair, Arizona Legislative Bioscience & Healthcare Caucus.

12:00 PM  Program concludes

Voices

Leonard Chayrez and his partner, Mark Garrity have been together for 21 years. Leonard is an Arizona native and Mark is just 18 months shy of being one. Leonard and Mark began noticing changes in Leonard’s memory and other cognitive abilities about 7 years ago. It took several years for him to finally be diagnosed with Younger Onset Alzheimer’s Disease; at the age 54 years old. They have been deeply involved with advocating about this devasting disease.   It took three years to get an initial Mild Cognitive Impairment diagnosis and another year for the Young Onset Alzheimer’s diagnosis. They had to advocate to their local medical providers to get past assumptions that the memory issues were due to stress. After finally being diagnosed, Leonard wanted to jump in to learn about his disease and to help raise awareness and, to remove the stigma of Alzheimer’s. Mark has supported Leonard for every step of their journey. Leonard’s enthusiasm, with Mark’s determination to support their shared success and advocacy, has proven to be helpful in giving both of them purpose and meaning in their lives. Key issues that they directly address are for earlier and easier detection and diagnosis, increased medical provider awareness, and treatment therapies that are just now beginning to come to market.  

Nina Cherian is a first-year medical student at the University of Arizona College of Medicine – Phoenix. She graduated from UCLA with a Bachelor of Science degree in neuroscience, then spent four years conducting pathology and clinical ophthalmology research before entering medical school. As a child, Nina struggled with vision loss and was diagnosed with an uncommon eye disorder called chronic intermediate uveitis. Her experience with chronic eye disease inspired her to pursue medicine and gave her precious insight into what comprises meaningful patient care. 

 

Clare Cory, Ph.D., is a two-time survivor of Inflammatory Breast Cancer. Following diagnoses in 2017 and 2021, she has undergone extensive treatment and lives with bilateral lymphedema. Raised in a small town in Montana, she has made Arizona home for more than three decades. A clinical psychologist, she has served as Associate Director of the Pascua Yaqui Tribe’s Centered Spirit Behavioral Health program for more than 26 years. She shares about her cancer experiences in a blog, momentsofclareity.com. She is passionate about advocacy, cancer research, family, sunrises and sunsets.

 

Mikaela Emery was diagnosed with Crohn’s disease at the age of 5. She has never really known a life without this chronic illness and has developed a sincere empathy and caring for others as a result.  She has had a rough road in the last 7 years, including flares, osteoporosis, hair-loss, seizures, multiple hospitalizations and medication rejection. Mikaela has come through it all with a great sense of humor and an outlook that amazes most. She has spread awareness through social media and proudly shared her journey, feeding tube and all.  She is a member of a Junior IBD board that helps raise money for research and supports newly diagnosed pediatric patients. Mikaela was recently an honored hero for the Crohn’s and Colitis Foundation Take Steps event. She is a major advocate for Camp Oasis, a summer camp for children with IBD. Now, at the age of 12, Mikaela hopes to continue to raise awareness and funds for Crohn’s disease research and support her fellow pediatric IBD warriors.

Natalya Foreman is a medical student at the University of Arizona College of Medicine – Phoenix. Her experiences advocating for her own complex health needs grew out of a medical mystery that filled the greater part of a decade. Just as she was gaining clarity and settling into a new diagnosis, her world completely changed in one moment when she suffered a traumatic brain injury in March 2022, months shy of starting medical school. She openly shares her story to help advocate for other students with chronic illnesses and to ensure that future healthcare providers understand the patient perspective. Natalya is also working towards her Master’s in Public Health through the University of Arizona Mel and Enid Zuckerman College of Public Health. She holds a B.A. in Integrative Biology and French from the University of California – Berkeley. 

George GalliherGeorge C. Galliher, III  has been serving as a Peer Advocate since 1998. Living with a major depressive disorder before then; he managed to graduate college, work as a Biomedical R&D Engineer and as a Scientist – Chemist. He started a business as a Process & Product Validation specialist. Major Depression alone brought all career efforts to a halt. Fortunately, during a voluntary hospitalization, a doctor specializing in “psycho neuro pharmacology” prescribed a “magic bullet”.

 

Mark Geiger is a lifelong hydrocephalus advocate. Mark was diagnosed with hydrocephalus as a child and has undergone multiple shunt surgeries over his lifetime. He has made raising awareness and funding for hydrocephalus his life’s work, dedicating his time professionally as well as running marathons recreationally to raise awareness and support for the cause.  In 2023, Mark joined the team at Anuncia Medical as VP of Sales and Marketing where new innovative devices to help people living with hydrocephalus are designed, developed. and delivered. 

 

Taylor Hoffman  is medical student at the University of Arizona College of Medicine – Phoenix. As a lifelong patient managing multiple autoimmune diseases, including Type 1 Diabetes, Taylor has used her experiences to influence policy, pass legislation, and teach advocacy insights.  She was recently awarded the Primary Care Physician Scholarship for her focus on the voice of the patient in chronic disease management. Taylor has a Master’s of Medical Studies from the UACOM-P and graduated Summa Cum Laude from Arizona State University with a B.S. in Neurobiology, Physiology, and Behavior.

 

Joan Koerber-Walker, is a wife, mother, grandmother, and  patient advocate.  She also serves as president and CEO of AZBio and as chairman of the board of the Opportunity Through Entrepreneurship Foundation.  These two organizations have come together to create AZAdvances.  Its mission is to support the creation and of Arizona-based health innovations. The team is  working to create a sustainable solution to address the need for early-stage life science funding for researchers and companies in Arizona and developing the programs they need to succeed.  The goal is to help develop and deliver the treatments and cures that patients are waiting for. 

 

Kevin Lohenry, PhD, PA-C serves as Interim Dean, College of Health Sciences; Assistant Vice President, Interprofessional Education; Clinical Professor, Department of Medicine at the University of Arizona. He joined the University of Arizona Health Sciences in 2022 after serving as the associate dean for graduate student affairs at the University of Southern California Keck School of Medicine.

 

 

 

Dr. Brad Pasternak is a Clinical Professor of Child Health at The University of Arizona.  He is currently the medical director of the pediatric inflammatory bowel program (IBD), as well as the fecal microbiota transplant program at Phoenix Children’s Hospital. He serves on the National Scientific Advisory committee of the Crohn’s and Colitis Foundation, the Pediatric IBD Committee of NASPGHAN, is co-chair of the Data Operations Committee of Improve Care Now (a large international collaborative of pediatric IBD programs) and has established an advocacy committee through that organization.  He has been involved in creating clinical guidelines and is currently involved in numerous clinical trials as primary investigator, multicenter studies evaluating epidemiology and practice patterns,  as well as translational research regarding the microbiome in pediatric IBD.  His greatest appreciation, next to his own family, is watching his young patients improve, thrive and become successful. 

 

Amish Shah, MD, MPH is a member of the Arizona House of Representatives, representing the people of  Central Phoenix and South Scottsdale since 2019. Dr. Shah is co-chair of the Arizona Legislative Bioscience & Healthcare Caucus, and a member  of the House Health & Human Services Committee and the House  Appropriations Committee. Dr. Shah is a practicing physician who has been saving lives in the emergency department  for 20 years. He is currently board certified in Emergency Medicine and Sports Medicine and practices throughout Arizona, treating adults and children.

 

Alex Tessmer had just gotten married in 1997 when he started having difficulty hearing. After his wife persistently pleaded with him to get a hearing test, Alex finally visited an otologist in 1999. Sure enough, the otologist diagnosed him with significant hearing loss in the high frequency range. The cause of the hearing loss was most likely due to listening to loud music at a younger age. Even though hearing aid technology has come a long way, Alex still has difficulty hearing individuals in a noisy environments or if someone is trying to whisper to him. COVID-19 proved especially difficult communicating with people wearing masks since he was unable to read lips. Alex currently works at BD as an Associate Director of Ideation and enjoys adventures with his beautiful wife, Susan, and 4 kids.

Arianna Tuomey is a medical student at the University of Arizona College of Medicine – Phoenix. She received her Master of Science in Cellular and Molecular Medicine from the University of Arizona College of Medicine – Tucson. In her second undergraduate year at the University of California – San Diego, she was diagnosed with Type 1 Diabetes at the age of 18. Subsequently, she was drawn to the field of diabetes, volunteered with the non-profit AYUDA (American Youth Understanding Diabetes Abroad) for 2 years, and joined as AYUDA’s Director of Operations in 2017. In this role, she has helped support youth living with Type 1 Diabetes in the United States and the Dominican Republic, maintaining AYUDA’s mission to empower youth to be agents of change and help diabetes communities around the world.

Kelly Walter is a medical student at the University of Arizona College of Medicine – Phoenix. She was born and raised in the northwest suburbs of Chicago, and moved to Boston to attend Northeastern University. In 2020, during her sophomore year of college, she was diagnosed with ulcerative colitis. After a year of learning how to live with a chronic illness, she began working in the hospital taking care of other chronically ill patients. In this role, she was able to better understand the patient experience apart from her own and some of the challenges that exist in accessing healthcare.

 

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