BEGIN:VCALENDAR VERSION:2.0 PRODID:-//wp-events-plugin.com//7.2.3.1//EN TZID:America/Phoenix X-WR-TIMEZONE:America/Phoenix BEGIN:VEVENT UID:1889@azbio.org DTSTART;TZID=America/Phoenix:20240920T090000 DTEND;TZID=America/Phoenix:20240920T120000 DTSTAMP:20240904T021023Z URL:https://www.azbio.org/events/voice-of-the-patient-2024 SUMMARY:Voice of the Patient - Biomedical Sciences Partnership Building - 2 0 Sep 24 09:00 DESCRIPTION:\n\n \;\nPatients are the reason we do what we do. \;\n Join the conversation on life science innovation from the patient perspect ive. \;\n\nDate: \; Friday\, September 20\, 2024\n\nTime: \;&n bsp\;9:00 AM – 12:00 PM\n\nNEW Location: Biomedical Sciences Partnership Building\n\n475 N 5th St\, Phoenix\, AZ 85004\n\n \;\n\n\n\n \;\n \nRegistration is complementary but space is limited.\n\nAttendees are res ponsible for parking fees.\n\n \;\nAgenda\nPlease see below for more a bout our speakers\n\n9:00 AM \;  \;Check-in\, Networking\, Refresh ments\n\n10:00 AM Program Begins\n\nWelcome - Joan Koerber-Walker and Bett y Parisek\n\nPatient Voices:\n\n Chantel Dooley\, PhD\n Kristina Sabetta \n Alicia Ogolla\n Nancy Collins and her daughter Rebecca\n Jill Anne C astle\, M.Ed \;\n Tina Kondos\n Melanie Street\n Adam Kurth\n\nPane l: \; Amplifying Patient Voices\n\n Joan Koerber-Walker (Moderator)\n Julie Hoffman\n Ashley Chambers\n\n12:00 PM \; Program concludes\n& nbsp\;\nThank You to Our Sponsors!\n \;  \;\n\n\nSPEAKERS:\nJill A nne Castle\, M.Ed \; has been a state and national advocate in both ed ucation and healthcare for almost 20 years. Jill teaches Educational Psych ology and Leadership at Mary Lou Fulton Teachers College at ASU. Jill cons ults for several patient advocacy organizations nationwide and is currentl y the Director of Education and Patient Advocacy for Little Hercules Found ation\, 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 D uchenne Muscular Dystrophy. \;\n\n \;\n\n\nAshley Chambers is a pr oud Virginian\, but has called The Valley of the Sun her home for almost 1 5 years. \; At the College of Charleston in South Carolina\, Ashley do uble majored in Political Science and Hispanic Studies. \; After colle ge graduation\, Ashley attended The George Washington University Law Schoo l in Washington D.C.\, where she focused on constitutional law. \; Aft er law school\, Ashley was offered a position at a law firm in Phoenix\, a nd she picked up and moved cross-country. \;  \;Ashley was a litig ator in Arizona for a decade\, with experience in both the public and priv ate 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 w anted to focus on issues directly impacting children’s health. \; As hley is currently the Executive Director at Arizona Families for Vaccines\ , focusing on building a grassroots pro-public health movement and bringin g those stories to the Arizona Capitol. \; Ashley also serves as SAFE ’s Director of Legal Affairs and specializes in building partnerships an d coalitions with diverse stakeholders. \; Ashley is passionate about translating legal jargon and legislation into easily understandable langua ge for diverse stakeholders\, including everyday citizens\, community grou ps\, businesses\, and policymakers\, thereby empowering them to make infor med decisions about their lives and communities. \; \;Ashley has 3 active children who keep her on her toes and an Arizona-born husband.&nbs p\; When Ashley is not spending time with her family\, she likes to exerci se\, read fiction books\, go for long walks\, and listen to legal and true -crime podcasts. \; Ashley maintains her Arizona and Virginia bar lice nses and is active in the legal community. \;  \; \;\n \;\ nNancy Collins and her daughter Rebecca have called Arizona home for almos t 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.& nbsp\;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 enjo yed perfect health\, this unexpected and persistent pain drastically chang ed 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 w as 100% occluded. Despite attempts using surgical correction\, blood flow could not be restored to her leg.From that point on\, Nancy has been focus ing on maintaining blood flow through diligent monitoring and lifestyle ch anges to avoid amputation. Although this situation could have been prevent ed\, Nancy and Rebecca are now using their experience to educate others. T hey are passionate advocates\, working alongside Kym McNicholas and TheWay ToMyHeart to raise awareness and prevent similar situations. This transfor mation wouldn't have been possible without Rebecca discovering Kym and her incredible organization\, which immediately stepped in to facilitate a co mplete change in doctors and care.\n \;\n\nChantel Dooley\, PhD\, has deep roots in the American Southwest\, having moved to Arizona from New Me xico at the age of 15. Her connection to the region is reflected in her lo ve for the unique landscapes and resilient flora that define the desert\, with succulents holding a special place in her heart.\n\nDr. Dooley's life took a transformative turn following the tragic motorcycle death of her f iancé\, Special Agent Alex Stanton\, USAF. In the years that followed\, s he embarked on a deeply personal journey to become a mother. Despite her i nitial 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 l aparoscopic endoscopy that she was diagnosed with a very rare disorder\, w hich prevented her from achieving pregnancy despite being a healthy 40-yea r-old woman. \;Dr. Dooley's resilience and commitment to her journey\, despite the challenges\, underscore her strength and determination. Her s tory is a testament to the complexities of fertility\, the importance of p erseverance\, and the need for continued advancements in reproductive heal th and other rare \;diagnoses.\n\n \;\n\nTina 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. He r condition continued to deteriorate for nearly 30 years. \; in Februa ry 2022\, she was diagnosed with Pulmonary Arterial Hypertension (PAH)\, a complication of scleroderma. This rare and life-threatening condition pre sented 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 in cluded various therapies\, medications\, rehabilitation\, and cutting-edge medical devices to bolster her heart and lung function. \; \;Sign ificant 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 voluntee r Peer Mentor with the Pulmonary Hypertension Association and inspires oth ers to manage chronic illness with hope and resilience. \;Tina's story emphasizes the importance of early diagnosis\, awareness\, and open commu nication in managing chronic illnesses and is a powerful reminder of findi ng strength through hope.\n\n \;\n\n\n\nJoan Koerber-Walker is preside nt and CEO of AZBio and a member of the AZBio Board of Directors\, Joan Ko erber-Walker works on behalf of the Arizona Bioscience and Medical Technol ogy Industry to support the growth of the industry\, its members and our c ommunity on the local and national level. Ms. Koerber-Walker is also a lif e science investor and has served on the boards of numerous for-profit and non-profit organizations. \; Learn more\n\n \;\n\n \;\n\nAdam Kurth shares his story “I am a very fortunate patient and scholar who f ound 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 reveale d lymphoma\, and later Common Variable Immune Disease (CVID). During the h ospital 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 stude nt 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 onl y a few).”\n\n \;\n\nAlicia Ogolla is a wife\, mother\, and patient advocate. She holds a master’s in science and has spent more than 23 yea rs of her career focused on various aspects of hereditary cancer and rare disease conditions. After many years of searching for the root cause of he r hereditary medical issues\, she was recently diagnosed with lipedema. Sh e is dedicated to openly sharing her story to help validate and advocate f or others in the community struggling to find support and resources. She a lso desires to collaborate with healthcare providers or anyone who wishes to understand a patient's perspective. Alicia wants those she encounters t o better understand the impact that the term "obesity" has on patients\, c aregivers\, and their family members. Obesity is an ugly word that stigmat izes and traumatizes patients\, regardless of their circumstances.\n\n&nbs p\;\n\nBetty Parisek \, EdD\, MSN\, RN is and University of Arizona Assist ant 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 Wald en University and is currently serving as the Program Director for the fir st of its kind UA CON Baccalaureate in Nursing with an Integrative Health focus. \; Learn more\n\n \;\n\n \;\n\n\n\nKristina Sabetta –  \;Kristina Sabetta is the Executive Director of the National Alliance on Mental Illness Valley of the Sun. She is a Faculty Associate at Arizon a State University in the Social Work Department. She is also a nonprofit Executive Consultant\, a Licensed Masters Social Worker (LMSW)\, a volunte er and a passionate mental health advocate. Ms. Sabetta dedicates her time \, energy\, and talents to what matters most: inspiring hope and saving li ves. \;Kristina’s professional experience in mental health advocacy is extensive and includes executive leadership roles in multiple organizat ions\, including the Arizona Peer and Family Coalition\, Mental Health Ame rica of Arizona\, Mental Health America of Wisconsin\, and CHEEERS Recover y Center (now CHR). Furthermore\, Ms. Sabetta has served as a Board Direct or 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 Coaliti on\, 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\, alm ost took her life. Once she found purpose in her pain\, she used her passi on to fuel her advocacy efforts.\n\n \;\n\nMelanie Street. \; As a resident of northern Arizona for thirty-plus years\, Melanie Street curre ntly calls Phoenix her home after contracting COVID-19 in 2021 and is curr ently disabled by the effects of long covid (LC). Being a previous life-lo ng recreational and competitive athlete\, she never fully recovered from h er 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 man age daily acquired brain injury (ABI) means learning to interact with life in a new way. Dysautonomia\, mast cell activation\, painful post exertion al 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 ha s experienced over 44 months and counting. Recovery is slow and Melanie be lieves it is possible through patience\, time\, and the support of counsel ors\, therapists\, functional and medical doctors. An urgency is needed at all levels to recognize the toll long covid is taking on individuals\, an d in turn\, the resulting impact it’s taking on individual lives within communities. We are at the beginning of creating frameworks for understand ing this disease and we have the opportunity of a lifetime to make an impa ct 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 sym ptoms. She’s navigating this life’s change by retreating from loud\, b ustling environments\, quietly sewing for her micro-business Bastet + Bobb in\, healing with her kitties at home\, and trying to acknowledge her illn ess and what she can do to function well. \;\n\n \;Melanie is a pa rticipant 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\, B anner Health’s Long Covid Clinic\, and other community resources.\n\n#Ma skTogetherAmerica #longcovidsos #longcovidmysleepinglion\nPhotographic and Video Notice:\nBy registering for or entering an event or program hosted by the Arizona Bioindustry Association\, Inc. (AZBio)\, you are entering a n area where photography\, audio and video recording may occur. Your entry and presence on the event premises constitutes your consent to be photogr aphed\, filmed\, and/or otherwise recorded and to the release\, publicatio n\, exhibition\, or reproduction of any and all recorded media of your app earance\, voice\, and name for any purpose whatsoever in perpetuity in con nection with AZBio\, its sponsors\, and its initiatives\, including\, by w ay of example only\, use on websites\, in social media\, news and advertis ing. By entering the event premises\, you waive and release any claims you may have related to the use of recorded media of you at the event\, inclu ding\, without limitation\, any right to inspect or approve the photo\, vi deo or audio recording of you\, any claims for invasion of privacy\, viola tion of the right of publicity\, defamation\, and copyright infringement o r for any fees for use of such record media.\n\nYou understand that all ph otography\, filming and/or recording will be done in reliance on this cons ent. If you do not agree to the foregoing\, please do not enter the event premises. CATEGORIES:AZ - Central LOCATION:Biomedical Sciences Partnership Building\, 475 N 5th Street\, Phoe nix\, AZ\, United States X-APPLE-STRUCTURED-LOCATION;VALUE=URI;X-ADDRESS=475 N 5th Street\, Phoenix\ , AZ\, United States;X-APPLE-RADIUS=100;X-TITLE=Biomedical Sciences Partne rship Building:geo:0,0 END:VEVENT BEGIN:VTIMEZONE TZID:America/Phoenix X-LIC-LOCATION:America/Phoenix BEGIN:STANDARD DTSTART:20230921T090000 TZOFFSETFROM:-0700 TZOFFSETTO:-0700 TZNAME:MST END:STANDARD END:VTIMEZONE END:VCALENDAR