Jul
    11
    Sat
    2020
    2020 Dystroglycanopathy Patient and Family Conference @ Virtual
    Jul 11 – Jul 12 all-day

    ***Registration is now open***

    Please join us for a virtual conference on July 11 and 12, 2020 that will include study updates as well as clinical and research Q&A sessions.

    See the full agenda  on the Iowa Wellstone website: https://medicine.uiowa.edu/mdsrc/news-events.  

    Note that morning sessions are intended for a general audience; other sessions are specific to teenagers and caregivers.

    Written consent will be required for the teen session.

     

    REGISTER USING THIS LINK: https://docs.google.com/forms/d/e/1FAIpQLSejd0I2KAhsjK_TDRX80eebRDR2mmfC10EIayOV7lrIQ65mfg/viewform?usp=sf_link

    **You will need to provide an email address to obtain a participant ID for the conference. Members of the same household may register for one participant ID if they will use the same device to access the conference.

     

    *If you are new to the group, or want a refresher on the dystroglycanopathies, please view Dr Mathews’ talk ‘Introduction to the Dystroglycanopathies’ here: https://uicapture.hosted.panopto.com/Panopto/Pages/Viewer.aspx?id=52b40f7a-bebd-4612-b408-c9d04311470c

    You will need to access zoom to attend the conference. If you are not familiar with zoom, refer to this QuickStart guide:

    https://support.zoom.us/hc/en-us/articles/360034967471-Quick-start-guide-for-new-users.

     

    Questions? Contact Carrie Stephan 319-356-2673; carrie-stephan@uiowa.edu

     

    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

    Aug
    18
    Tue
    2020
    Gene Repair Approaches with LGMD 2i and LGMD2g: Understanding CRISPR @ Virtual
    Aug 18 @ 4:00 pm – 5:00 pm

    An amazing webinar in conjunction with CURE LGMD 2i is coming up on Friday, September 18th, 2020 @ 4pm EST. Hear new research and findings on LGMD 2i and 2g.

    Register here for this webinar:
    https://us02web.zoom.us/webinar/register/WN_MRbFFwphTvWXiSItt19Pxw

    Sep
    4
    Fri
    2020
    Demystifying Genetic Test Reports: Understanding VOUS Part Two @ Virtual
    Sep 4 @ 4:00 pm – 5:00 pm

    In part two of this webinar, Monkol Lek PhD, will share his experience as a rare disease researcher in LGMD. A GRASP LGMD researcher and Assistant Professor at Yale University, Monkol knows first hand the difficulty in finding a diagnosis. Monkol is not only a researcher, he also has LGMD 2G. As a researcher in uncovering new forms of LGMD, you will want to hear his insight into the field of discovering new forms.

    Monkol will answer questions submitted in advance from individuals. To submit a question to Dr. Lek, please send by August 20th to kathryn@thespeakfoundation.com.

    Sep
    11
    Fri
    2020
    A New Limb-Girdle Muscular Dystrophy Natural History Study @ Virtual
    Sep 11 @ 12:00 pm – 1:30 pm

    Exciting News! On Friday, September 11th at 12:00 PM (EST), Sarepta Therapeutics will introduce a new study for the Limb-Girdle Muscular Dystrophy Community via a live simulcast webinar. The Speak Foundation will host this important free simulcast webinar as Sarepta Therapeutics introduces “A New Limb-Girdle Muscular Dystrophy Natural History Study.”

    To view the simulcast webinar live on September 11th @ 12:00 PM (EST), please register in advance at https://www.eventbrite.com/e/sarepta-therapeutics-lgmd-simulcast-webinar-hosted-by-the-speak-foundation-tickets-117865225061

    Sep
    14
    Mon
    2020
    Global Genes LIVE! A RARE Patient Advocacy (un)Summit @ Virtual
    Sep 14 @ 8:00 am – Sep 25 @ 11:00 pm

    Join us for a variety of interactive and educational online events, meet-ups, workshops and performances September 14-25, 2020 at Global Genes LIVE! A RARE Patient Advocacy (un)Summit. This two-week event will provide members of the rare disease community, stakeholders, and allies with opportunities to connect and engage with each other through interactive activities paired with educational programming.

    Participants will gain insights about the latest in rare disease innovations, best practices for advocating on an individual and organizational level, and strategic ways to accelerate change. We look forward to bringing you new and exciting programming and activities at Global Genes LIVE!

    *REGISTER HERE: https://globalgenes.org/event/live/

    Sep
    18
    Fri
    2020
    Gene Repair Approaches with LGMD 2I & 2G: Understanding CRISPR @ Virtual
    Sep 18 @ 4:00 pm – 5:15 pm

    Dr. Charles Emerson and Dr. Scot Wolfe will help you to understand gene editing in this upcoming webinar on Sept. 18th. They are doing amazing research out of University of Massachusetts for LGMD 2i and 2g.

    Register here for this webinar:
    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
    MDUK Muscles Matter 2020: LGMD Seminar @ Virtual Event via Zoom
    Sep 30 @ 10:00 am – 7:15 pm

    Join us for the ‘MDUK Muscles Matter 2020’ limb girdle muscular dystrophy seminar

    To celebrate limb girdle muscular dystrophy (LGMD) Awareness Day, we are holding an online seminar on Wednesday 30 September to keep you up to date with the latest research into LGMD.

     

    You will have the chance to hear from experts about progress into research and treatments, and get the opportunity to ask questions.

     

    The LGMD seminar is on Wednesday 30 September at 10am. The seminar is free to attend and will be held on Zoom.

    There is a session on employment following the LGMD seminar, which is not directly linked but that you might find interesting to attend too. You can see the full list of topic seminars here.

    Practical issue seminars

    Living in a world with COVID-19: Tuesday 25 August, 3 – 4.10pm > book the Living in a world with COVID-19 seminar

    Assistive technology: Wednesday 9 September, 6 – 7.10pm > book the assistive technology seminar

    Managing education; overcoming challenges for children, parents and teachers: Monday 14 September, 4.30 – 5.40pm > book the education seminar

    Navigating the world of employment: Wednesday 30 September, 12 – 1.10pm > book the employment seminar

    Accessing financial support: Saturday 10 Oct, 12 – 1.10pm > book the financial support seminar

    Accessing services in the world of COVID-19: Thursday 22 October, 6 – 7.10pm > book the services seminar

     

    Oct
    24
    Sat
    2020
    10th Annual Casino Night for CureLGMD2i @ @ virtual
    Oct 24 @ 7:00 pm – Oct 25 @ 11:00 pm

    We will be hosting our 10th Annual Casino Night event on October 24th.

    It is with mixed emotions that we will be virtually hosting our 10th Annual Casino Event to benefit CureLGMD2i.  Over the years, the support of our friends, family and local community has helped to make Casino Night our flagship fundraising event. However, the current COVID situation is requiring us to do things a bit differently.  Although we will miss getting together in person with our supporters and loved ones, we are excited to make our 10th Annual Casino Night an international event!

    Join us for a virtual happy hour and auction event via zoom. Hosted by the Brazzo family and our emcee, Melissa Grove! Grab your cocktail and tune in from the comfort of your own home.  Our virtual event will have games of chance and auction items that you love, but none of the hassle of leaving your house!  Register now to make sure you can view all the prizes in advance of the event. We are actively seeking sponsorships and prize donations to make this our most successful event to date!  Proceeds will be used to continue supporting research in drug therapies, gene editing, and patient conferences.

    REGISTER HERE!

     

    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
    21
    Sat
    2020
    LGMD Patient Day 2020 @ Virtual Event via Zoom
    Nov 21 @ 9:00 am – 1:00 pm

    Mark Your Calendar: 2020 LGMD Patient Day! 💚

    On November 21st, 2020, from 9-1pm CST, University of Kansas Medical Center will be hosting an event for LGMD patients, family, and friends.

    In order to keep all event participants safe, the event will be hosted virtually this year. This is a wonderful opportunity to connect and get new updates in the LGMD research field.

    To help prepare for this event, please RSVP to this event by August 31st. You can RSVP via email gkleindienst@kumc.edu.

     

    Sep
    17
    Fri
    2021
    2021 National LGMD Conference @ Virtual
    Sep 17 – Sep 20 all-day

    Announcement 2021 Conference Dates

    The 2021 National LGMD Conference is going international for 2021!  Our conference will be a series of events and sessions held virtually from September 17th through the 20th.  Registration begins in early April.  Check back then to register!

    Best news?  The events are free for patients to attend and we hope to have an unprecedented number of individuals living with LGMD attend in 2021!

    Mark your calendar….more details will be announced in the coming months

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