Raise awareness for families with children afflicted with undiagnosed or rare diagnosed conditions. Urge insurance companies to reimburse genome sequencing in clinical settings. Network with researchers, insurance providers, and industry stakeholders to meet these families’ needs.

RUN Board of Directors

Chris Hart

Chris Hart has worked in the corporate offices of Schneider National as well as Transpersonnel, a subsidiary of Manpower, in customer service management for many years. She worked in financial services for General Electric Healthcare for several years. She is currently the Youth Director and facilitates retreats, yearly mission trips, coffee shop talks and year-round fundraising drives. She is the mother of five children and lives in Grafton, WI.

Mark Hoffman, Ph.D
Director – Center for Health Insights – University of Missouri – Kansas City (UMKC)
UMKC Assoc. Professor Biomedical and Health Informatics
UMKC Assoc. Professor Pediatrics
Children’s Mercy Hospital – Director Translational Bioinformatics

 

Dr. Hoffman completed his undergraduate training at William Jewell College (Liberty, MO – USA), where he participated in the Oxbridge Honors program as a Molecular Biology major. As an undergraduate, he studied bioethics at Oxford University. He then completed a Ph.D. in Bacteriology from the University of Wisconsin. During that time, Mark completed a minor in Biotechnology and studied Computer Science and an internship at DNASTAR. This work began his professional interest in informatics. After completing postdoctoral research in microbiology, Dr. Hoffman began his sixteen-year career at Cerner Corporation, a commercial vendor of electronic health records. While there he played a variety of roles, from software engineer to Vice President of Research, and led initiatives related to genomics, public health, clinical decision support and informatics capabilities for clinical research. He is an inventor on 16 issued patents. In 2013 Dr. Hoffman returned to academia and is a member of the faculty at the University of Missouri – Kansas City School of Medicine and the Director of the Center for Health Insights. He teaches a class in Clinical Bioinformatics, leads research informatics initiatives and also serves as the Director for Translational Bioinformatics at Children’s Mercy Hospital. med.umkc.edu/docs/chi/MarkHoffmanCV_2013.pdf

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Reid Robison M.D., M.B.A.
Reid Robison, MD, MBA, is a physician, geneticist, and bioinformaticist. Dr. Robison was formerly on faculty at the University of Utah and co-directed the Molecular Genetics lab in the Department of Psychiatry, and was Associate Director of the Psychiatry Research clinic, where he conducted research using next-generation sequencing technologies (i.e. whole exome sequencing) for the discovery of disease-causing genes in childhood-onset neuropsychiatric disorders such as autism, intellectual disability and developmental delay. Dr. Robison is an active humanitarian, and has led groups of students and healthcare providers on charitable & teaching expeditions to far off places including post-quake Haiti, rural Ghana, Thai-Burma border camps, and Guyanese orphanages. Closer to home, in 2010, he founded a free neuropsychiatric clinic call the Polizzi clinic, named after his Grandmother, that has provided care for thousands of individuals in the Salt Lake valley. Dr. Robison also co-founded the Utah Foundation for Biomedical Research (and its associated Institute for Genomic Medicine), a 501(c)3 non-profit organization dedicated to finding the genetic causes of rare conditions, as well as advancing the field of genomic medicine by encouraging the use of CLIA-certified next-generation sequencing techniques. He was part of the team who discovered Ogden Syndrome, and has worked with a number of disease pedigrees using whole genome sequencing data to find the etiology of other unknown genetic syndromes. Dr. Robison has experience commercializing healthcare-related technology from ‘bench to bedside’, and co-founded Anolinx LLC, a healthcare data analytics & software firm for the pharmaceutical and biotechnology industries, that was acquired in 2012. Dr. Robison is an adjunct faculty member at both Brigham Young University and the University of Utah, and is now working feverishly on Tute Genomics, a genome analysis and interpretation company, to transform healthcare by bringing whole genome analysis to the masses. 

tutegenomics.com/about#reidrobison

Gina Szajnuk (Zanik)  

Gina Szajnuk was born and raised in Madison, Wisconsin. She serves as the Co-founder and Executive Director for the Rare and Undiagnosed Network (RUN), a 501©3 nonprofit organization. Her three children, each of whom live with an undiagnosed rare disease, continue to inspire and motivate her to empower rare and undiagnosed patients and their families with genomic information and community through advocacy, networking and support. Gina is also undiagnosed and is the Undiagnosed Advocacy Ambassador for the National Organization for Rare Disorders (NORD). In 2016, Gina was the Chair of Utah Rare and made Utah the #1 state for Rare Disease Day. She is still on the Executive Committee for Utah Rare. Gina continuously works to build a network of rare advocates, geneticists, researchers, specialists, and volunteers who can come together under one platform. She is a member of the Participant Engagement and Empowerment Resource (PEER) of the Undiagnosed Diseases Network (UDN). She is a member of the Undiagnosed Disease Network International (UDNI) as well as the Rare Disease Diagnosis Consortium. She has been asked to be a Rare Disease Advocacy Professional for The Rare Advocacy Movement (RAM). She is currently working to launch, as the Co-founder, a new platform, RUNmyDNA.com. She is a public speaker as well as a contributor to The Mighty. She is married to Justin Zanik, the NBA Utah Jazz Assistant General Manager. Through her husband’s position in the NBA, Gina has brought awareness to the NBA about the importance of rare and undiagnosed diseases. In 2016, Gina won the Rare Voice Award from the EveryLife Foundation for Rare Diseases as well as accepted the Rare Champion of Hope – Advocacy Award from Global Genes. She graduated with a Bachelor of Arts from the University of Wisconsin – Madison.

Brian Villers

A native of Kansas City, Brian is a seasoned retail executive with over 20 years of experience in the industry. He began his career with Wal-Mart in 1993 and has worked for Kohl’s Department Stores since 1999 where he has held several progressive leadership roles during his tenure. He is currently the Director of Print Production with responsibility for managing a multi-disciplinary business unit of more than 30 associates with an annual budget exceeding $425 million. Brian’s areas of expertise are in business strategy, procurement, operational effectiveness and efficiency and change management. Brian earned an Executive MBA from the University of Wisconsin – Madison in 2010 and a Bachelor of Music, Music Theory from the University of Kansas in 1997. He resides in Milwaukee, Wisconsin.

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Gene Wegner, MD 

Gene Wegner, MD, B.S.  Degree – Dartmouth College, M.D., University of Wisconsin Medical School, Faculty Appointments, University of Wisconsin Medical Imaging Department, Instructor, 1967-69, Assistant Professor, 1968-70, Assistant Clinical Professor,1970-75, Director of Radiology, Monroe Clinic & St. Clare Hospital, Monroe, WI, 1970-75, Serviced small Wisconsin & Iowa Community Hospitals, 1975-2012, Board Certified:  General Diagnostic Radiology and Radiotherapy. Special competence in Nuclear Radiology and Nuclear Medicine, American College of Radiology Accreditation, Past member of Radiological Society of North America and American College of Radiology, Author of numerous published medical articles. He is a RUN Board member. Gene Wegner, MD, is a retired radiologist living in Madison, WI. He practiced for over forty years. www.rareundiagnosed.org

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Justin Zanik

Justin Zanik  is starting his fifth season as the Utah Jazz’s first-ever Assistant General Manager. Justin, who began his new role in September of 2013, works directly under Jazz general manager, Dennis Lindsey.  In addition to helping to facilitate contract negotiations, managing the team’s salary cap from a basketball operations standpoint, and overseeing the scouting of international prospects, Justin also coordinates all basketball operations decisions for the Jazz’s hybrid relationship with the Idaho Stampede of the NBA Development League. Involved in all aspects of athlete representation for the past 15 years, Justin has also been a certified agent for the National Basketball Players Association since 2003. He came to the Jazz from ASM Sports, where he served as vice president of the Andy Miller-led agency since 2004.  Justin oversaw all aspects of career management for ASM’s basketball clients, ranging from contract negotiations to career planning and client services, including the creation of marketing opportunities and community initiatives.  He was also an integral part of all of ASM’s contract and statistical analysis during preparation for free agency, and also developed and customized ASM’s pre-draft training, interview and workout programs. Prior to joining ASM, Justin spent four years as vice president of basketball operations for Priority Sports & Entertainment from 1998 to 2002, where he managed European player contract negotiations and assisted in negotiation, research and recruitment of Priority’s NBA clients. Justin graduated from Northwestern University in 1998 with a degree in economics. He is a member of the Board of Directors as well as Secretary for RUN. Justin and his wife, Gina, reside in Salt Lake City, Utah with their three children, Ava, Oskar, and Lucy.

RUN Scientific and Medical Board

Makayla S. Allison

Kingston Atwater

Nadia Bodkin

Nadia is a seasoned rare disease patient advocate, born with three rare conditions herself. Immediately after graduation, Nadia went straight into patient advocacy work through EDSers United, a foundation she founded for Ehlers-Danlos Syndrome. She currently holds the positions of Senior Executive Vice President of MaxifyLife. Nadia has also facilitated and coordinated the development of the Rare Advocacy Movement (RAM), a patient advocacy initiative focused on documenting the ever-evolving complex structure and unique dynamics of the rare disease patient advocacy landscape. Nadia functions on the premise that she is to make the most of the time that she has left on this earth. With this time, Nadia is determined to make a difference in the lives of those affected by rare conditions through advocacy and facilitating collaboration amongst all rare disease stakeholders that aim to improve the lives of those affected by rare conditions.

As a rare disease patient and stroke survivor, Stephanie Fischer is passionate about rare disease advocacy. She served as Chief Patient Engagement and Communications Officer at the EveryLife Foundation for Rare Diseases, a nonprofit dedicated to accelerating innovation for rare disease treatments through science-driven public policy, until leaving to pursue other opportunities in February 2018.

Prior to joining the Foundation, Stephanie spent more than 10 years focused on health policy communication at the Biotechnology Innovation Organization (BIO) and Pharmaceutical Research and Manufacturers of America (PhRMA).  She previously worked for U.S. Representative Jim Greenwood (PA-8) for nine years until his retirement in 2004. Stephanie has a Bachelor of Arts in Government from Cornell University and resides in Bucks County, Pennsylvania. You can find her on Twitter as @RarePOV

Julia Fisher

 Jenny N. Frisk

Ilana Jacqueline

Christian Jacobs

Betsy Kanarowski, PhD, LCSW

 Mark Kristensen, MAED

 John Neal

Catrina Nelson

Rachel Nielsen

Katie Nuffer

Maureen Mack

Cristina Casanova Might 

Becca Parker

Becca has a B.S. in Biology and a Ph.D. in Neuroscience from the University of Utah. In addition to her past research on neural prosthetics, Becca has served as an educator and research administrator, and is active in educational outreach. She is excited to contribute to the rare disease community. Becca currently works at Recursion Pharmaceuticals as a scientist and technical writer, advancing Recursion’s vision of Making Rare Diseases History: recursionpharma.com

Mary Elizabeth Parker, PT, PhD, PCS, NCS – Medical Liaison & Co-founder

Aliyah PeedleAliyah Peedle is 14 when she was born she weighed 3lb 10oz. She has the VCTE of the VACTERL Association.
(V) = vertebral abnormalities
(A) = anal atresia
(C) = cardiac (heart) defects
(T) = tracheal anomalies including tracheoesophageal fistula
(E) = esophageal atresia
(R) = renal (kidney) and radial abnormalities
(L) = (other) limb abnormalities
She Tested positive for Methamphetamines when she was born and was then taken from her birth mother. She was born at 31 weeks and was born with Esophageal atresia/ tracheoesophageal fistula type c, had a bleed on her brain and a hole in her heart. She has had about 75 surgeries. She has been diagnosed with GERD, Reactive airway, chronic lung disease, Tracheomalacia, Two fused ribs,Two fused vertebrae, Asthma, IGA deficiency, gastroparesis. She has a GJ Tube that she is fed through and an appendicostomy that we flush her intestinal tract and bowels out with. She gets aspiration pneumonia a lot so she misses a lot of school. She loves to bake cupcakes and give them to anyone she can. At one point, they told us to never let her eat or drink by mouth again because the stuff she could get down her esophagus would go into her lungs and the stuff that wouldn’t go into her lungs wouldn’t go down her esophagus either. We said, “How do you sit at a table as a family and tell one of your children they cannot eat? How do you not let the have their birthday cake even if it is only a couple bites.” She has a very big heart and has raised some money by baking and selling cupcakes for a family whose father had terminal brain cancer. It has not been easy to watch her face so many challenges and suffer so much, at times she will say mom I just wish I was normal. I told her everyone’s normal is different. She has defied all the odds that were stacked against her from day one. Aliyah serves on the RUN Advisory Board and is one of our RUN Rare Teen Directors.  www.rareundiagnosed.org/Aliyah

Amy Sue Peedle

Amy Sue Peedle is from Tremonton, Utah. She has four daughters. Brittany is twenty-seven years old. Victoria is twenty-five years old. Deja is seventeen years old.  Aliyah is fifteen years old. She has two grandblessings. Macie, four years old, and Gary, two years old. She grew up in Tremonton, Portage and Malad, Idaho. She met her husband Andrew who is from England at a local swimming pool. Amy served on the Family Advisory Council at Primary Children’s Hospital for four years. She loves spending time with her family, playing games, enjoys the beach and love to go anytime she can. She worked as a Certified nurses aid for sevens years before becoming a full-time mother and caregiver to her youngest daughter, Aliyah. Aliyah has She has the VCTE of the VACTERL Association. Amy Sue serves on the RUN Advisory Board and is the RUN VACTERL Chair. www.rareundiagnosed.org/Aliyah

Julie Potter

Rachel Petties

Rachel Petties, Mother, Patient Advocate, Oklahoma State Ambassador for NORD, Board of Directors for Lipodystrophy United, Advisory Board Member for CISCRP on Patients Accessing Clinical Trials, Moderator for RareConnect, Member/Blogger for Speak Now for Kids, Member of Disability Advocates, Rare Disease Legislative Advocate, Licensed Paralegal

I am an avid leader, self-starter and motivator. I have a strong public speaking background as well as over a decade of hands on experience with fundraising events via social media/networking as well as local in-person events. I have attended 2 years of In-District Lobby Days and marched on Capitol Hill. I am the State Lead for Rare Disease Day in my home state. I see advocating opportunities and I take advantage of every single one afforded to me. This is fight is personal for me and I take helping save lives very serious because one of those lives belong to my baby. My youngest daughter who is 2 years old suffers from a very rare metabolic disease called Congenital Generalized Lipodystrophy.  Her specific mutation is (AGPAT2). This disease occurs in 1 of 10 million worldwide. I advocate for her disease and for our Rare Disease Community and am currently a member of a Patient Advisory Board for Accessing Clinical Trials. I have had the opportunity to speak at the Lipodystrophy Symposium in Ann Arbor Michigan in 2014 as well as various other events and publications featuring our life and journey with Rare. We are also featured in the documentary Run4Rare with Noah Coughlan and Luminous Pictures coming out in 2017. Our Rare journey has been published in countless articles, blogs, journals, etc., in hopes to keep the Rare fire burning bright.  My objective is to spread awareness, campaign and gain legislative backing to support Rare.  Our efforts are to find treatments, cures, and financial/medical assistance for those greatly in need as well as more timely diagnosis and easier access to clinical trials. I am also a Licensed Paralegal/Legal Assistant with a 10 year background in Personal Injury, Domestic, Medical Malpractice, Product Liability, Criminal and Probate/Estate.   rachel.petties@rareaction.org

Seth Rotberg

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Ava Szajnuk

​Ava Szajnuk is a 15-year-old freshman at Skyline High School in Salt Lake City, Utah. She was born a healthy child and hit all of her milestones early. When she was three years old, they found an arachnoid cyst. When Ava was five years old, she was diagnosed with an undiagnosed genetic dysfunction, an undiagnosed autonomic neuropathy and many more syndromes. Ava immediately went on to have four cranial surgeries due to a subdural hygroma and is now shunt-dependent. Ava continues to search for answers for the root cause of her disease processes. She has two siblings and a mother that all have an undiagnosed rare disease. Ava is on the Advisory Board for the Rare and Undiagnosed Network (RUN).  She has spoken publicly at the Utah State Capitol as well as at the University of Utah Health to the freshman classes of medical students. She is a patient, a caregiver and an advocate. Although Ava’s disease process has hindered many of her physical abilities, it has given her the opportunity to see life through a more empathetic lens. Ava is talented at writing, drawing and swimming. She also enjoys singing and her guitar. She is a part of the Congress debate team at her school. She loves to spend time with family and friends. ​