Jul
    18
    Sat
    2020
    2020 MDA Engage Limb-Girdle Muscular Dystrophy Symposium @ Virtual
    Jul 18 @ 11:00 am – 4:00 pm

    REGISTER BY JULY 14TH IF INTERESTED IN ATTENDING

    A day-long symposium bringing together people living with one of the many types of LGMD and their family members and friends to learn about the current “state of the art” in LGMD research and treatment. Families will also have the opportunity to network and build relationships with other LGMD families, as well as hear from top experts in the LGMD field.

    Event Chair: Dr. Colin Quinn, Assistant Professor of Clinical Neurology, University of Pennsylvania

    Agenda

    • MDA Mission Spotlight (10:00am CT)
      • Nicole Petrouski, Muscular Dystrophy Association
    • Keynote Presentation (10:10am CT))
      • Dr. Colin Quinn, Assistant Professor of Clinical Neurology, University of Pennsylvania
    • Genetics & LGMD (11:10 am CT)
      • Dr. Matthew Wicklund, Neurologist, University of Colorado
    • Exercise & LGMD (12:10pm CT)
      • Mary Kingston, PT, DPT, NCS, CSCS, UPMC Centers for Rehab Services
    • Research and LGMD (1:10pm CT)
      • Dr. Nick Johnson, Associate professor of Neurology and Human and Molecular Genetics and vice chair of research in Neurology, Virginia Commonwealth University
    • Bone Health & LGMD (2:10pm CT)
      • Dr. Sankar Bandyopadhyay, Neurologist, Penn State Hershey

     

    For questions reach out to: mdaengage@mdausa.org | 1-833-ASK-MDA1 (1-833-275-6321)

    Jul
    24
    Fri
    2020
    “Demystifying Genetic Test Reports for LGMD: Understanding VOUS”” @ Virtual
    Jul 24 @ 4:00 pm – 5:00 pm

    On Friday, July 24th @ 4pm EST, we have a new webinar for individuals with Limb Girdle Muscular Dystrophy to explain the often complicated process of genetic testing. Are you one of the many who has received a VOUS and find your genetic test report very confusing? Dr. Peter Kang from the University of Florida Medical College and member of GRASP LGMD will be sharing on the important topic of “Demystifying Genetic Test Reports.” You will not want to miss this amazing webinar brought to you by the Speak Foundation.

    VOUS stands for Variant of Uncertain Significance. Many individuals with LGMD are perplexed by complicated genetic tests reports that come back with a VOUS. This webinar will help patients better understand genetic test reports.

    Dr. Peter Kang, member of GRASP LGMD, will be our guest speaker and will share on this important topic.

    Please submit questions to Dr. Kang by July 17th to kathryn@thespeakfoundation.com.

    Register here:
    https://us02web.zoom.us/webinar/register/WN_V8RLgvsGQMqN2l3X5hxKmg

    Sep
    22
    Tue
    2020
    LGMD Day on the Hill 2020 @ Virtual
    Sep 22 @ 12:00 pm – 1:00 pm

    Be a voice for Limb Girdle Muscular Dystrophy as we advocate for the first time as a patient community on the Hill! Sign up at https://www.eventbrite.com/e/lgmd-day-on-the-hill-tickets-1…

    We will all meet up at 12:00 pm (Eastern Time Zone) on Tuesday, Sept 22nd for our LGMD Day on the Hill. You will be sent the link to join the week prior to our virtual event online. Our virtual event is FREE for any LGMD individual, family, or caregiver. Two mobility scooters will be given away during the one hour virtual event to individuals living with LGMD in the USA!

    Let’s take our advocacy work to the next level in 2020. We have set Tuesday, September 22nd, as the target date for our day in Washington, D.C. Due to COVID-19, we will hold this event remotely to keep everyone as safe as possible but we still need all hands on deck! Our strength and our voice is so much greater together, so we need YOUR help now!

    We will need people to make calls and send emails that day! This is a multi-pronged approach where we will be delivering key messages in various ways. Everyone will meet on the virtual event at 12:00 pm EST and then our Volunteer Director, Ralph Yaniz, will share how you can make a difference and participate in advocacy for LGMD Day on the Hill!

    We want to make sure that our nation’s leaders, on both sides of the aisle, understand LGMD and all the ramifications of future treatments. We also want to make sure we can raise key issues around accessibility for all people with disabilities!

    Sep
    23
    Wed
    2020
    E-learning Expert LGMD Masterclass — TREAT-NMD @ Virtual
    Sep 23 – Sep 24 all-day

    Attention Healthcare Professionals: Virtual TREAT-NMD LGMD Masterclass To Be Held September 23-24, 2020

    Applications have now opened for the 1st TREAT-NMD Limb Girdle Muscular Dystrophy Masterclass. The masterclass will now be an e-learning event, with more details to follow soon. The event will take place on Wednesday 23rd and Thursday 24th September 2020 and feature sessions on diagnosis, emerging therapies, physiotherapy, genetics and much more. There will also be a range of breakout sessions with Q&A interaction so that delegates can discuss issues, ask questions and network.

    This masterclass is aimed at professionals working in the diagnosis, care and treatment for people living with LGMD.

    *Please note the agenda is in draft form, as TREAT-NMD recently moved the event from a face to face meeting to an online event*

    Click here to see the Draft Agenda

    To apply for a place, please fill in this Application Form

    The agenda and selection of participants is overseen by the TREAT-NMD Education Committee (TEC). Whilst financial support is generously received from multiple funders, the masterclass is organized and run entirely independently by TREAT-NMD with no input from the funders.

    There is no closing date for applications but numbers still limited.

    If you would like any further information, please contact LGMD Education Coordinator katie.pegg@newcastle.ac.uk

    Sep
    30
    Wed
    2020
    6th Annual LGMD Awareness Day
    Sep 30 all-day
    Oct
    24
    Sat
    2020
    10th Annual Casino Night for CureLGMD2i @ Eden Resort & Suites
    Oct 24 @ 6:00 pm – 11:00 pm

    We will be hosting our 10th Annual Casino Night event on at the Eden Resort in Lancaster, PA on October 24th and our 3rd Annual Golf Outing at Crossgates in Millersville on October 12th, 2019. It would be great if you could attend one or both of these great events! Please consider offering a gift certificate, gift basket, or prize to be auctioned. We are also looking for corporate sponsors of various levels. In turn, your company will be recognized in our e-newsletter, on our website, and at the event. We are a 501(c)(3) approved public charity and, as such, your donation is tax-deductible. We appreciate any support that you may have to offer. To find out more about our cause, please visit our website at: www.curelgmd2i.com.

    “If you prefer to mail in your registration and pay by check – click on this link for the printable registration form:

    Casino_Golf Registration 2019.pdf

    Thank you so much for your interest and support!

    Keith & Kelly Brazzo,
    Co-Founders of CureLGMD2i

    590 Centerville Road #340

    Lancaster, PA 17601

    (717) 405-7518
    Tax ID#: 80-06804

    Nov
    6
    Fri
    2020
    MDC Neuromuscular Conference 2020 @ Sheraton Centre Toronto Hotel
    Nov 6 – Nov 8 all-day
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