msg-admin

2022 NMSG Annual Meeting

Posted on by msg-admin

23rd Annual Neuromuscular Study Group Scientific Meeting was held in Stresa, Lake Maggiore, Italy

September 30 – October 2, 2022

Thank you for attending the 23rd Annual NMSG Scientific Meeting, we believe it was a big success!

The printed agenda books for the meeting were held up in Italian customs and never made it to the meeting site. We are having them reprinted and if you provided your address with registration, we will be sending them out soon in the mail.

In addition, we are sending out a link to retrieve certificates of attendance. It will arrive from virtualbadge.io so keep a lookout for it. You will verify it is you, enter a code and then will be able to download and/or print the certificate.

The meeting will be available to view on the NMSG YouTube page shortly. https://www.youtube.com/channel/UCx1yKe8ohBhBvBPnKN1QUug

If you have any questions or need anything please contact Liz Paulk, NMSG Administrator epaulk@kumc.edu.

On behalf of the 2022 NMSG Planning Chairs:

Valeria Sansone, M.D., Ph.D. and James Lilleker, MBChB, Ph.D.

22_NMSG_Agenda

The RRNMF Journal has been published including the 2022 NMSG submitted accepted abstracts.

https://journals.ku.edu/rrnmf/issue/view/2135

Please contact NMSG Administrative Manager Liz Paulk epaulk@kumc.edu
msg-admin

2020 MSG Annual Meeting

Posted on by msg-admin

Thank you for a great 2020 MSG Annual meeting!

Thank you to all who participated in the 2020 MSG virtual meeting. If you would like to review the recorded sessions please see the links below.
Friday recorded general session https://youtu.be/mdw-_sRbgC4
Saturday recorded general session https://youtu.be/ztzsL5igp38
Sunday recorded general session https://youtu.be/lPNHuQI37ko

20_MSG_Annual-Meeting-Booklet_0917

Accepted Abstracts are posted on the RRNMF Journal at https://journals.ku.edu/rrnmf

msg-admin

MSG Annual Scientific Meeting Sponsorship Levels

Posted on by msg-admin

Platinum: $50K+

  • Sponsor 1 evening social events (limited, first come first serve)
  • Full page recognition in meeting agenda booklet
  • Recognition from podium at Opening and Closing sessions
  • Featured logo and recognition in Program/Registration brochure
  • Featured logo and recognition on Annual Meeting Website.
  • Full complimentary conference registrations for 6 representatives, including all meals and the opportunity to attend a session of your choice.
  • Six –foot skirted display table available for the duration of the annual meeting
  • 20 minutes dedicated to speak/present

Gold: $30K +

  • 1⁄2 page recognition in meeting agenda booklet
  • Recognition from podium at Opening and closing sessions
  • Exclusive recognition on the sign for one breakfast, lunch, or dinner of your choice (not including evening social hour events)
  • Logo recognition in Program/Registration brochure
  • Logo recognition on Annual Meeting Website
  • Six-foot skirted display table available for the duration of the annual meeting
  • Full complimentary conference registration for 3 representatives, including all meals and the opportunity to attend sessions of your choice
  • 20 minutes dedicated to speak/present

Silver: $15K +

  • 1⁄4 page recognition in meeting agenda booklet
  • Recognition from podium at opening sessions
  • Logo recognition on Annual Meeting Website
  • Six-foot skirted display table available for the duration of the annual meeting
  • Full complimentary registrations for 2 representatives, including all means and the opportunity to attend the sessions of your choice

Bronze: $5K +
• Name recognition in meeting agenda booklet
• Logo recognition on Annual Meeting Website
• Six-foot skirted display table available for duration of annual meeting
• Full complimentary registrations for 1 representatives, including all means and the opportunity to attend the sessions of your choice

Basic Corporate: $2K
• Name recognition in meeting agenda booklet
• Name recognition on Annual Meeting Website
• Six-foot skirted display table available for duration of annual meeting

$700 for each additional Pharma Representative to attend

msg-admin

Investigating Pompe Prevalence in Neuromuscular Medicine Academic Practices (IPANEMA)

Posted on by msg-admin

The incidence of type II glycogen-storage disease (Pompe disease) varies depending on ethnicity and geographic region. As of 2010, nine studies have been published documenting the incidence of Pompe disease. It is most common within the African American population, with an incidence of 1 in 14,000. In the U.S. more broadly speaking, the combined incidence of all three variants of the disease is 1 in 40,000. These estimates relied on the frequencies of three mutations in the gene acid alpha-glucosidase (GAA), leading to variants of the disease. Criteria for inclusion in the studies were often non-selective; in many cases, molecular genetic screening was done at birth. With such a high prevalence of Pompe disease reported, it is expected that large university medical centers specializing in neuromuscular diseases would see a higher incidence of Pompe disease among their patients. From a comparable Italian multicenter study, it appears that Pompe disease accounts for 3% of all patients presenting with proximal weakness with or without CK elevation.

msg-admin

2016 MSG Annual Meeting

Posted on by msg-admin

The 2016 Muscle Study Group annual Meeting was held September 24-26, 2016, at the Snowbird Ski & Summer Resort in Snowbird, UT. Please click on the following links to be directed to the presentation slides, Poster Abstracts, and agenda for the meeting.

Final Agenda

Abstracts: Link to Abstracts

Presentations: Link to Presentations

Sponsors

MSG 2016 Sponsors

msg-admin

Natural History Study of Spinal Muscular Atrophy (SMA)

Posted on by msg-admin

Spinal Muscular Atrophy (SMA) is the leading genetic cause of death in infancy. It is a devastating disease that leads to progressive loss of those nerve cells that control our muscle bulk and movement. Patients develop increasing weakness in all muscles, eventually including those needed for breathing. In more than half of patients, SMA starts in infancy and typically leads to death within the first 2 years of life. In others, the disease begins in childhood and leads to significant disability.

SMA is caused by a defect in the “Survival of Motor Neurons” (SMN1) gene. Researchers are hopeful to find a cure, because nature has provided humans with a second gene, almost an identical copy of the SMN1 gene. Normally, the second gene does not contribute much, but researchers think that its function can be increased by medications.

To find out whether these medications help patients with SMA, we have to conduct clinical trials. Here, we propose to prepare for clinical trials. We will invite SMApatients to join our research effort. We will examine them regularly to better understand their disease. The visits will include questions, physical exam, blood drawing, and sometimes X-rays and a skin biopsy. We will use modern computer methods to process the information. While we are doing this, we will plan a clinical trial. Once the clinical trial begins, we will offer SMA patients participation if they meet the criteria for that trial.

We will make sure that the participants’ privacy is maintained and that the study risks are as low as possible.

Identifying an effective SMA treatment is very important because there is currently none. Clinical trials are the only way to decide whether a new treatment works in SMA patients or not.

Sponsor: Columbia University