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News & Events

2013 conference - 70 patients and family members participated
2019 conference - 140 patients and family members participated
2020 conference – first virtual conference with 205 participants on Zoom
2021 conference – first hybrid conference, 74 in-person and 65 virtual attendees
Patients enrolled in the Wellstone study do annual clinical research visits
Research visits assess motor function
Clinical research helps doctors understand disease progression and improve care
Patients and families tour research labs as part of the conference
Families learn about the science behind the disease
Participants meet researchers and ask questions
Patients share their perspectives
Participants learn about the latest research on potential therapies (Dr. Kathryn Wagner of Kennedy Krieger Institute, 2019)
Researchers share the latest findings from the Wellstone study
Questions from patients help guide future research directions
Informal interactions help researchers and patients learn from each other
Everyone enjoys a therapeutic break-out session
The conference creates bonds of support
Conference friendships are renewed each year

Upcoming Events

The Dystroglycanopathies: 2023 Iowa Wellstone Center Patient & Family Conference

Register for the 2023 Wellstone Conference here! 

Lodging for the UI Wellstone Patient & Family Conference: 

  • The Graduate Hotel (conference center) is holding a room block during the conference 
  • Use this link to book: The Graduate - Wellstone Room Block
  • The accessible room options are towards the bottom of the page 
     
  • Hotel Vetro (less than a block from the conference center) also has a room block 
  • Use this link to book: Hotel Vetro - Wellstone Room Block
  • Make sure to check the “Accessible Rooms” box to display these options 

Questions? Contact Carrie Stephan at 1-319-356-2673 or carrie-stephan@uiowa.edu

Latest News

New Publications

Awards and Lectures

  • Dr. Steven Moore, Co-Director of the Iowa Wellstone MDSRC, was invited to give the 2022 Saul R. Korey Lectureship at the American Association of Neuropathologists (AANP) Annual Meeting. The Korey Lectureship was established in 1989 by Dr. Robert D. Terry, a pioneer in Alzheimer’s disease research, to honor Dr. Korey, the founder and first chair of the Department of Neurology at Albert Einstein College of Medicine. As described by Dr. Terry, the Korey Lectureship recognizes someone who has "been an active member of the Association...a working Neuropathologist...responsible for diagnostic work as well as teaching and research.” Or, as the AANP states, someone who has “done it all and done it well.” Dr. Moore's lecture was titled "Adventures in Muscular Dystrophy: the DGC, LAMA2, and Other Sticky Relationships." Dr. Moore was also awarded the AANP 2022 Award for Meritorious Contributions. Congratulations Dr. Moore!

  • Dr. Katherine Mathews, who leads the clinical research project at the Iowa MDSRC, received the second annual "Pioneer for LGMD2i" award from the CureLGMD2i committee. The award was announced at the CureLGMD2i's 11th annual casino event, a fundraising event held with a virtual component on October 2, 2021. Lacey Woods, the first annual "Pioneer for LGMD2i" award recipient, created a video to present the award to Dr. Mathews, who also accepted the honor through a video shown at the event. Congratulations Dr. Mathews!

Recent Publications

Basic Science Research

Basic science research in Project 1 investigates the cellular and molecular mechanisms that underlie the dystroglycanopathies to provide a scientific foundation for the development of diagnostic and therapeutic strategies, as well as approaches to monitoring the efficacy of potential therapies. 

Clinical Research

Data collected from Wellstone study patients in Project 2 is analyzed and published in order to inform researchers and clinicians about disease progression and improve patient care.

Diagnostics Research

Diagnostics research draws on the broad spectrum of skeletal muscle biopsies available in Core B to investigate and develop novel diagnostic testing procedures for muscular dystrophy and to expand the toolbox of evaluation techniques for muscle biopsies and cell cultures from dystroglycanopathy patients.

More Publications from Wellstone Center Investigators

Recent Invited Lectures and Talks by Wellstone Center Investigators

Dr. Kevin Campbell

2021   

  • Regeneron Seminar Series, Tarrytown, New York, Virtual
  • Albert Einstein College of Medicine, Cell Biology Outside Speaker Seminar Series, Bronx, New York, Virtual
  • San Diego Glycobiology Symposium, San Diego, California, Virtual
  • ASBMB Herbert Tabor Award Lecture, San Diego, California, Virtual (Voted one of the "Most Favorited" sessions and presentations, Experimental Biology 2021 conference)
  • Joint Glycobiology Meeting, Heidelberg, Germany, Virtual
  • Tamio Yamakawa Award Lecture, Osaka, Japan, Virtual

2020   

  • 12th International GlycoT Conference, San Diego, California, Virtual
  • University of Iowa Neuromuscular-Neurogenetics Symposium, Iowa City, Iowa, Virtual
  • Congenital Disorders of Glycosylation Pre-Meeting Course, Guadalajara Jalisco, Mexico, Virtual

2019   

  • International Workshop for Glycosylation Defects in Muscular Dystrophies, Charlotte, North Carolina
  • 100 Years of Neurology at the University of Iowa Centennial Symposium, Iowa City, Iowa
  • University of Iowa Neuromuscular-Neurogenetics Symposium, Iowa City, Iowa
  • 5th Ottawa International Conference on Neuromuscular Disease & Biology, Ottawa Canada
  • University of Iowa First-Generation Student Awards and Recognition Ceremony, Iowa City, Iowa
  • Wellstone Centers Network Meeting, Rochester, New York

Dr. Steven Moore

2021

  • 2021 Academy of Clinical Laboratory Physicians and Scientists (ACLPS) Meeting, Virtual

2019

  • American Association of Neuropathologists Meeting, Atlanta, Georgia

News & Events