Date/Time
Date(s) - 20 Sep 2024
9:00 AM - 12:00 PM
Location
Biomedical Sciences Partnership Building
Patients are the reason we do what we do.
Join the conversation on life science innovation from the patient perspective.
Date: Friday, September 20, 2024
Time: 9:00 AM – 12:00 PM
NEW Location: Biomedical Sciences Partnership Building
475 N 5th St, Phoenix, AZ 85004
Registration is complementary but space is limited.
Attendees are responsible for parking fees.
Agenda
Please see below for more about our speakers
9:00 AM Check-in, Networking, Refreshments
10:00 AM Program Begins
Welcome – Joan Koerber-Walker and Betty Parisek
Patient Voices:
- Chantel Dooley, PhD
- Kristina Sabetta
- Alicia Ogolla
- Nancy Collins and her daughter Rebecca
- Jill Anne Castle, M.Ed
- Tina Kondos
- Melanie Street
- Adam Kurth
Panel: Amplifying Patient Voices
- Joan Koerber-Walker (Moderator)
- Julie Hoffman
- Ashley Chambers
12:00 PM Program concludes
Thank You to Our Sponsors!
SPEAKERS:
Jill Anne Castle, M.Ed has been a state and national advocate in both education and healthcare for almost 20 years. Jill teaches Educational Psychology and Leadership at Mary Lou Fulton Teachers College at ASU. Jill consults for several patient advocacy organizations nationwide and is currently the Director of Education and Patient Advocacy for Little Hercules Foundation, a non-profit dedicated to supporting patients access to treatment and care. She has been a Special Education Director and a mediator for the Arizona Department of Education as well as a published writer and speaker. Lastly, and most importantly, Jill is a parent of a young adult with Duchenne Muscular Dystrophy.
Ashley Chambers is a proud Virginian, but has called The Valley of the Sun her home for almost 15 years. At the College of Charleston in South Carolina, Ashley double majored in Political Science and Hispanic Studies. After college graduation, Ashley attended The George Washington University Law School in Washington D.C., where she focused on constitutional law. After law school, Ashley was offered a position at a law firm in Phoenix, and she picked up and moved cross-country. Ashley was a litigator in Arizona for a decade, with experience in both the public and private sectors. Most recently, Ashley served as Executive Director of a non-profit that lobbied at the legislature, which sparked her passion for legislative advocacy. After having children, Ashley knew she wanted to focus on issues directly impacting children’s health. Ashley is currently the Executive Director at Arizona Families for Vaccines, focusing on building a grassroots pro-public health movement and bringing those stories to the Arizona Capitol. Ashley also serves as SAFE’s Director of Legal Affairs and specializes in building partnerships and coalitions with diverse stakeholders. Ashley is passionate about translating legal jargon and legislation into easily understandable language for diverse stakeholders, including everyday citizens, community groups, businesses, and policymakers, thereby empowering them to make informed decisions about their lives and communities. Ashley has 3 active children who keep her on her toes and an Arizona-born husband. When Ashley is not spending time with her family, she likes to exercise, read fiction books, go for long walks, and listen to legal and true-crime podcasts. Ashley maintains her Arizona and Virginia bar licenses and is active in the legal community.
Nancy Collins and her daughter Rebecca have called Arizona home for almost 20 years. Nancy, a retired nurse and businesswoman, has always thrived on being active in her community. As a cherished member of numerous local clubs and organizations, she is known and loved by everyone around her. In January of 2020 while on the way to an event, Nancy was suddenly halted by severe pain in her right lower leg and foot. Having always enjoyed perfect health, this unexpected and persistent pain drastically changed her life overnight. It led to a four-year journey of countless medical consultations, specialist referrals, and tests– all without any answers. Sadly, when a new doctor finally provided an answer, she was diagnosed with PAD. Unfortunately, due to the delay in diagnosis, her right leg was 100% occluded. Despite attempts using surgical correction, blood flow could not be restored to her leg.From that point on, Nancy has been focusing on maintaining blood flow through diligent monitoring and lifestyle changes to avoid amputation. Although this situation could have been prevented, Nancy and Rebecca are now using their experience to educate others. They are passionate advocates, working alongside Kym McNicholas and TheWayToMyHeart to raise awareness and prevent similar situations. This transformation wouldn’t have been possible without Rebecca discovering Kym and her incredible organization, which immediately stepped in to facilitate a complete change in doctors and care.
Chantel Dooley, PhD, has deep roots in the American Southwest, having moved to Arizona from New Mexico at the age of 15. Her connection to the region is reflected in her love for the unique landscapes and resilient flora that define the desert, with succulents holding a special place in her heart.
Dr. Dooley’s life took a transformative turn following the tragic motorcycle death of her fiancé, Special Agent Alex Stanton, USAF. In the years that followed, she embarked on a deeply personal journey to become a mother. Despite her initial efforts through sperm donation and IUI, and enduring three rounds of IVF, success remained elusive. Determined to find answers, Dr. Dooley sought the expertise of another provider. It was through an exploratory laparoscopic endoscopy that she was diagnosed with a very rare disorder, which prevented her from achieving pregnancy despite being a healthy 40-year-old woman. Dr. Dooley’s resilience and commitment to her journey, despite the challenges, underscore her strength and determination. Her story is a testament to the complexities of fertility, the importance of perseverance, and the need for continued advancements in reproductive health and other rare diagnoses.
Tina Kondos has faced the challenges of chronic illness throughout her adult life. Beginning at the age of 21, she started experiencing unusual symptoms and, after a seven-year search for a diagnosis, was diagnosed with Systemic Scleroderma. Her condition continued to deteriorate for nearly 30 years. in February 2022, she was diagnosed with Pulmonary Arterial Hypertension (PAH), a complication of scleroderma. This rare and life-threatening condition presented a new set of challenges for Tina, but she remained resolute in her refusal to lose hope. She embarked on an intensive treatment plan that included various therapies, medications, rehabilitation, and cutting-edge medical devices to bolster her heart and lung function. Significant progress has been made in treating Pulmonary Arterial Hypertension (PAH) over the past decade. Despite the absence of a cure for PAH, Tina now serves as a Holistic Health and Wellness coach. She is also a volunteer Peer Mentor with the Pulmonary Hypertension Association and inspires others to manage chronic illness with hope and resilience. Tina’s story emphasizes the importance of early diagnosis, awareness, and open communication in managing chronic illnesses and is a powerful reminder of finding strength through hope.
Joan Koerber-Walker is president and CEO of AZBio and a member of the AZBio Board of Directors, Joan Koerber-Walker works on behalf of the Arizona Bioscience and Medical Technology Industry to support the growth of the industry, its members and our community on the local and national level. Ms. Koerber-Walker is also a life science investor and has served on the boards of numerous for-profit and non-profit organizations. Learn more
Adam Kurth shares his story “I am a very fortunate patient and scholar who found a brand new meaning for my life during a series of medical challenges. At 17 years old, I needed a liver transplant due to jaundice and liver failure. After waiting for only 2 years, the surgery happened and revealed lymphoma, and later Common Variable Immune Disease (CVID). During the hospital visits, extended stays, I found mathematics and philosophy, and learned to cope through throwing myself at learning as much as possible, and even taking courses while recovering from bone marrow transplantation. I remain a dedicated scholar to this day, as a current master’s student at ASU in statistics, and continuing next year in biostatistics at the doctorate level. I hope that my story and perspective will help patients in similar situations, with interests in optimal organ/stem cell matching strategies, neurodegenerative diseases, and mental illness (to name only a few).”
Alicia Ogolla is a wife, mother, and patient advocate. She holds a master’s in science and has spent more than 23 years of her career focused on various aspects of hereditary cancer and rare disease conditions. After many years of searching for the root cause of her hereditary medical issues, she was recently diagnosed with lipedema. She is dedicated to openly sharing her story to help validate and advocate for others in the community struggling to find support and resources. She also desires to collaborate with healthcare providers or anyone who wishes to understand a patient’s perspective. Alicia wants those she encounters to better understand the impact that the term “obesity” has on patients, caregivers, and their family members. Obesity is an ugly word that stigmatizes and traumatizes patients, regardless of their circumstances.
Betty Parisek , EdD, MSN, RN is and University of Arizona Assistant Clinical Professor and Vice Chair, Nursing and Health Education. Dr. Parisek has been a registered nurse since 1995 with an earned MSN in 2003. She also holds a doctorate in Education Leadership from Walden University and is currently serving as the Program Director for the first of its kind UA CON Baccalaureate in Nursing with an Integrative Health focus. Learn more
Kristina Sabetta – Kristina Sabetta is the Executive Director of the National Alliance on Mental Illness Valley of the Sun. She is a Faculty Associate at Arizona State University in the Social Work Department. She is also a nonprofit Executive Consultant, a Licensed Masters Social Worker (LMSW), a volunteer and a passionate mental health advocate. Ms. Sabetta dedicates her time, energy, and talents to what matters most: inspiring hope and saving lives. Kristina’s professional experience in mental health advocacy is extensive and includes executive leadership roles in multiple organizations, including the Arizona Peer and Family Coalition, Mental Health America of Arizona, Mental Health America of Wisconsin, and CHEEERS Recovery Center (now CHR). Furthermore, Ms. Sabetta has served as a Board Director for both the American Occupational Therapy Association, the Southwest Network and Stand Together and Recover Centers (STAR). Ms. Sabetta is the Co-Chair of the Advocacy Committee for the Arizona Peer and Family Coalition, and she sits on the Arizona State Hospital’s Governing Board. Kristina has lived with depression for the past 28 years. More recently, she was diagnosed with anxiety. Bulimia, a serious eating disorder, almost took her life. Once she found purpose in her pain, she used her passion to fuel her advocacy efforts.
Melanie Street. As a resident of northern Arizona for thirty-plus years, Melanie Street currently calls Phoenix her home after contracting COVID-19 in 2021 and is currently disabled by the effects of long covid (LC). Being a previous life-long recreational and competitive athlete, she never fully recovered from her COVID-19 infection, but continues to have hope of full recovery; she wants to get back to being the dedicated athlete and entrepreneur that has defined her identity! Long covid is an inflammatory disease and it shifts shape over time. What does long covid disability look like? Having to manage daily acquired brain injury (ABI) means learning to interact with life in a new way. Dysautonomia, mast cell activation, painful post exertional malaise, impactful ABI symptoms, limiting POTS, unannounced flushing, traveling neuropathy, tinnitus, startle response and anxiety; all a part, and just a fraction, of 250 recognized LC symptoms that Melanie has experienced over 44 months and counting. Recovery is slow and Melanie believes it is possible through patience, time, and the support of counselors, therapists, functional and medical doctors. An urgency is needed at all levels to recognize the toll long covid is taking on individuals, and in turn, the resulting impact it’s taking on individual lives within communities. We are at the beginning of creating frameworks for understanding this disease and we have the opportunity of a lifetime to make an impact now. Melanie proudly manages her illness daily and it’s impossible to work in the environments she used to call her “career” due to ABI symptoms. She’s navigating this life’s change by retreating from loud, bustling environments, quietly sewing for her micro-business Bastet + Bobbin, healing with her kitties at home, and trying to acknowledge her illness and what she can do to function well.
Melanie is a participant in the NIH RECOVER study and the Arizona CoVHORT Covid-19 Public Health Research Study, feels supported through trauma counseling and by participating in group resources with Brain Injury Alliance of Arizona, Banner Health’s Long Covid Clinic, and other community resources.
#MaskTogetherAmerica #longcovidsos #longcovidmysleepinglion
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