Since 2015, the Utah Program for Inherited Neuromuscular Disorders (UPIN) has hosted an annual conference to bring together leading researchers, clinicians, and families living with neuromuscular disorders.
We are excited to announce that this year we will be taking this community tradition VIRTUAL!

We are eager to utilize this opportunity for innovative and creative programming. Hosting The 5th Annual UPIN Family Conference online will open up pathways to diverse connections within the Neuromuscular community that transcend the confines of space. This year’s virtual conference will be held on Zoom on Saturday, October 24th from 10:00am – 5:00pm. 

Please see below for the conference agenda and more information on how to register for sessions!

Photo Policy: By registering for the Virtual UPIN Family Conference, you hereby understand that you may be photographed, videotaped, or digitally recorded, as may be your voice, and hereby waive any objection, condition, limit, or right you may have to the photographs or recordings.

The Virtual UPIN Family Conference Program

Saturday, October 24th 

Opening Session & Facilitated Dialogue Sessions

10:00 – 10:15am (MST)

Join us for the Virtual UPIN Family Conference Opening Session presented by Dr. Russell Butterfield of the Utah Program for Inherited Neuromuscular Disorders. 

10:15 – 11:45am (MST)

One of the primary goals of the UPIN Family Conference is to create opportunities for connections.

Following Dr. Butterfield’s opening remarks, participate in our ‘Facilitated Family Dialogues’ for a chance to talk to other patients and their families about topics that matter to you!

All participants registered for this session will be randomly assigned a Zoom Breakout Room. You will remain in this room for the duration of the session. Every 30 minutes, a new trained facilitator will rotate in to your breakout room.

Trained facilitators will come in equipped with prepared discussion questions on the following topics:

2020: The Year We Learned to Live with COVID

Genetic Testing: What Are Our Options?

Preparing for Your Clinic Visit

Keynote Address

12:45 – 1:30pm (MST)

Glass Half Full with Leslie Krongold

We are delighted to have Leslie Krongold joining us at the keynote speaker for the 5th Annual UPIN Family Conference! Diagnosed with DM 1 when she was in her 30’s, Leslie is an inspiration for anyone and most especially those living with a disability. Leslie is a devoted educator, with a Doctorate degree in Education, who is passionate about coaching others through both the challenges and positive aspects of diagnosis. Sharing messages of courage, strength and positivity via her podcast, Glass Half Full, Leslie works to normalize and validate the emotional experiences of individuals who are impacted by debilitating conditions.

Listen to Glass Half Full with Leslie Krongold at http://GlassHalfFull.online, and consider joining the Glass Half Full Group on Facebook!

Presentation Sessions 

2:00 – 2:30pm (MST)

Disability Law Center, Utah's Protection and Advocacy Agency

Summary: There are many ways in which legal issues affect the medical care of children with disabilities – access to appropriate educational services, housing availability and conditions, navigating Medicaid, and more. This presentation will explain who DLC is and what we can do for you. We work statewide, and all services are free of charge.

Presenter: Nick Jackson, Staff Attorney

2:30 – 3:00pm (MST)

Adapting Clothing with Eaze - Adapteaze

Summary: Monica Allen, owner and creator of Adapteaze, will demonstrate a simple adapted pair of sweatpants that will simplify dressing and undressing your wheelchair bound loved one. This will save lifts and help both the affected loved one and the caregiver in this challenging daily routine. She will also recommend other options to ease daily dressing needs. Adapt-Eaze clothing is also available on Etsy for sale or special order.

Presenter: Monica Allen

3:00 – 3:30pm (MST)

Utah State Office of Rehabilitation - Vocational Rehabilitation Program

Summary: Attendees will learn about vocational rehabilitation services and programs offered through the Department of Workforce Services, Utah State Office of Rehabilitation. Attendees will be provided with information about how to apply for services and the eligibility process. Attendees will be provided with information about Pre-Employment Transition Services available for students with disabilities. 

Presenter: Aimee Langone, MEd, CRC, LVRC

Expert Panel & Closing Session

4:00 – 5:00pm (MST)

In recognizing that our patients and their families are often working with additional resources outside of our clinics, this year’s conference will close with an Expert Panel session. 

During the 45 minute Expert Panel, attendees will have the opportunity to hear from a variety of experts – Physical Therapists, Occupational Therapists, Speech Therapists, Dieticians, Pulmonologists, Social Workers, Geneticists, Genetic Counselors, Psychologists, and Neuromuscular and Neurology Specialists – that they may interact with throughout their disease progression. These experts will field pre-submitted questions from attendees for the first 30 minutes of the session, and then engage in 15 minutes of interactive questioning from the live audience conducted by a moderator from the UPIN team. 

Please see below for more information about each of this year’s Expert Panelists. 

Melissa McIntyre, PT, DPT

Physical Therapist

She/Her/Hers

Melissa McIntyre is a physical therapist and clinical evaluator with the Utah Program for Inherited Neuromuscular Disorders (UPIN) at the University of Utah. Through UPIN, her work focuses on research and clinical care of neuromuscular disorders affecting both adult and pediatric populations. Melissa received her Doctor of Physical Therapy (DPT) from the University of Utah and is currently pursuing a PhD in Rehabilitation  Sciences at the University of Utah. In her free time, she enjoys any activity that takes her to the mountains.

Amelia Wilson, PT, DPT

Physical Therapist/ Clinical Evaluator

She/Her/Hers

Amelia is originally from Madison, WI and came out to Utah for undergrad and to complete her doctorate in physical therapy. She has experience in a variety of physical therapy settings and has worked in her current position as a specialist in neuromuscular diseases at the University of Utah for several years.  Amelia works as a physical therapist in multiple multidisciplinary clinics to help improve function and mobility of patients and serves as a clinical evaluator for a variety of clinical trials. She enjoys rock climbing, hiking and baking bread in her spare time.

Grace Gough, MS, RDN, CD

Registered Dietitian

Mrs/She/Her/Hers

I grew up in Salt Lake City and got a bachelors and masters degree from the University of Utah in Exercise and Sport Science and Nutrition and Dietetics, respectively.  I spent the first 7 years of my career  working in oncology at Huntsman Cancer Hospital as the outpatient dietitian there.  I made the move to neuromuscular disease about 3 years ago and have enjoyed that change of focus.  I have 4 kids and enjoy being a mom, as well as running, playing tennis, reading, hiking, and skiing on both water and snow.

Becky Hurst Davis MS, RD, CSP, CD, CNSC

Registered Dietician

She/Her/Hers

Becky Hurst Davis is a registered dietitian working at Primary Children’s Hospital in Salt Lake City, UT. She graduated with her Masters of Science in Nutrition from the University of Utah. Becky is a certified specialist in pediatric nutrition and a certified nutrition support clinician. She has great interest in clinical research and providing improved nutrition care to people with neuromuscular diseases. She serves as the Nutrition Chair for Cure SMA’s Medical Advisory Council.

Sarah Gallant, MS, CCC-SLP

Speech-Language Pathologist

She/Her

Sarah Gallant received her Master’s Degree in Speech Pathology in 2011 from the University of Utah. She has spent her career in inpatient and outpatient neuro-rehab settings and has been a part of the Neuromuscular multidisciplinary team since January, 2019. She has specialty certifications in swallow disorders and swallow rehabilitation. Her areas of interest include non-invasive instrumental evaluations of swallow function and assistive technology for communication. When she is not in clinic, Sarah can be found on the trail with her German Shepherd.

Taylor Berhow, MSW, MPA

Behavioral Health Specialist & Social Worker at the University of Utah Imaging and Neurosciences Center

Her/She

 I grew up in Salt Lake City and moved to Washington D.C. to work after I graduated with a B.A. in political science. Working on Capitol Hill convinced me that instead of attending law school, I wanted to pursue social work, and I have since found a lot of passion in advocating for patients with rare disease and medical disabilities. I have worked as a social worker in a variety of medical settings, including here at the University of Utah, as well as the Muscular Dystrophy Association. In my free time, I like to read (mostly Lord of the Rings), drink chocolate milk, and spend time outside.

Josh Bonkowsky, MD, PhD

Bray Presidential Chair in Child Neurology

Chief, Division of Pediatric Neurology

Director, Primary Children’s Center for Pediatric Personalized Medicine 

Him/His/He

Dr. Bonkowsky grew up in Decatur, Georgia; attended college at Harvard University and did his MD/PhD training at the University of California, San Diego. His work focuses on the care and research of children with neurological disorders and especially leukodystrophies. In his free time he hangs out with his kids and enjoys running in the mountains.

Russell Butterfield, MD, PhD

Associate Professor 

Neuromuscular Specialist 

He/Him/His

Dr. Russell Butterfield is an Associate Professor in the Departments of Pediatrics and Neurology, and the director of the Utah Program for Neuromuscular Disorders (UPIN). His research efforts are in understanding the impact of genetic modifiers of severity of muscular dystrophy phenotypes and identifying targets for therapy development. This includes NIH funded research in characterization of genotype/phenotype relationships and molecular pathogenesis in Collagen VI related muscular dystrophies and a CDC funded surveillance project for all types of muscular dystrophy. He has an interest in all types of neurogenetic and neuromuscular disorders with an emphasis on muscular dystrophies of childhood onset.

Summer Gibson, MD

Associate Professor

Chief Division of Neuromuscular Medicine, Department of Neurology

She/Her/Hers

Dr. Summer Gibson is an Associate Professor of Neurology and Chief of the Neuromuscular Medicine Division at the University of Utah. She was born and raised in Utah. She received her medical degree from the University of Texas Health Science Center San Antonio before completing her neurology residency training and a fellowship in clinical neurophysiology and neuromuscular diseases at the University of Utah. Her clinical interests are in neuromuscular disorders and electrodiagnosis (EMG). Within neuromuscular disorders her focus is on amyotrophic lateral sclerosis (ALS), muscular dystrophies, peripheral neuropathies, and myasthenia gravis. She co-directs the Motor Neuron Disease/ALS and Muscular Dystrophy Clinic/MDA clinic at the University of Utah.

She has published extensively in the area of ALS, muscular dystrophies, peripheral neuropathies and myasthenia gravis. She also participates in clinical trials for diseases in these areas. In her free time she enjoys spending time with her family and being outside.

Melissa Dixon, BS, MS, PhD

Visiting Assistant Professor 

Educational/Counseling Psychologist 

She/Her/Hers

Missy Dixon, PhD, MS earned her PhD in counseling psychology, and her MS in professional counseling from the University of Utah. She completed her clinical training in counseling psychology at Brigham Young University in 2010. She is currently a visiting Assistant Professor in the Department of Pediatrics, Divisions of Pediatric Neurology, Psychiatry and Behavioral Health. Her research focuses on cognitive development and function, functional connectivity and neural networks in neuromuscular disease. Additionally, she researches the psychosocial impact of living with muscular dystrophy and neurogenetic disorders. Away from work, Missy enjoys spending time with her family and friends, being outside in the mountains, and traveling.

Bob Weiss, PhD

Professor in the Department of Human Genetics 

He/Him/His

Dr. Robert Weiss is a Professor in the Department of Human Genetics. He received his BS in Biology from the Massachusetts Institute of Technology and his PhD in Genetics from the University of Washington, studying the fidelity of protein synthesis. He did his postdoctoral work at Cold Spring Harbor Laboratory before joining the faculty of the Department of Human Genetics at the University of Utah, where his early research focused on technologies that contributed to sequencing the human genome. His later research efforts have involved studying the genetics and genomics of various human disorders, including hereditary cancers, nicotine dependence and numerous types of neuromuscular disorders. Through a collaborative effort, the United Dystrophinopathy Project, his laboratory developed and offers DNA diagnostics to patients afflicted with Duchenne muscular dystrophy (DMD). His current research efforts include discovering genetic modifiers of disease progression in patients with neuromuscular diseases using genome-wide association strategies.

Tara Newcomb, MS

Genetic Counselor

She/Her

Tara is originally from Yankton South Dakota. She completed her undergraduate degree at the University of Nebraska and then travelled to Utah where she graduated from the University of Utah Genetic Counseling Program. She began working with pediatric neurology patients and neuromuscular research. She has participated in research studies for patients with SMA, DMD, CMT, FSHD, Myotonic Dystrophy as well as patients without a diagnosis. Professional interests include helping patients access genetic testing as well as understanding how different changes in DNA affect disease severity. In her free time she enjoys spending time outdoors: running, biking, hiking and camping with her family.