Sep
    30
    Sun
    2018
    4th Annual LGMD Awareness Day @ 4th Annual Global LGMD Awareness Day
    Sep 30 all-day
    Apr
    6
    Sat
    2019
    Info Day – MDUK @ Crown Plaza, Newcastle – Stephenson Quarter
    Apr 6 all-day

    Join Muscular Dystrophy UK for an Information Day with sessions tailored specifically for anyone living with LGMD. It’s free and you’ll hear about progress in research and clinical developments relating to LGMD. Equally importantly, you’ll get to meet others living with the condition, and you’ll even get lunch!

    Date: Saturday 6 April

    Time: TBC

    Location: Crown Plaza, Newcastle – Stephenson Quarter, Hawthorn Square, Forth Street, Newcastle Upon Tyne, NE1 3SA

    Leading researchers and clinicians will be there to tell you about the latest research and healthcare. There will also be a range of exciting condition specific workshops around independent living.

    You’ll get to meet others living with muscle-wasting conditions and enjoy a day filled with practical advice and information about improving your quality of life.

    The Muscular Dystrophy UK  advocacy team will also be on hand to answer any questions you may have about getting the services and equipment you are entitled to.

    The booking for this event will be on a first-come, first served basis, to reserve your free place please visit https://www.musculardystrophyuk.org/events/research-and-information-day/ 

    If you have any questions about the day please get in touch with us on 08006526352 or email infoday@musculardystrophyuk.org

    Lunch will be provided but please be aware there are no crèche facilities on the day.

     

    May
    18
    Sat
    2019
    2019 MDA Engage Limb-Girdle Symposium @ Hilton Garden Inn Richmond Innsbrook
    May 18 @ 8:00 am – 5:00 pm

    There is no cost to attend the event, however, registration is required.
    Register by Friday, May 10, 2019, online at https://mda.secure.force.com/eventRegistration/?id=7012L000001E6fT

    Registration & Breakfast: 8:00am-8:45am
    Event: 9:00am-4:00pm (lunch included)
    Social Hour: 4:00pm-5:00pm

    • Keynote Presentation – Clinical Trials in LGMD
      • Nicholas Johnson, MD, MS-CI, Virginia Commonwealth University
    • Drug Development Round Table
      • Moderator – Scott Vota, DO, Virginia Commonwealth University
    • MDA Spotlight
      • Sarah Arndt and Niki Benfield

    Learn more at https://www.mda.org/care/mda-engage/disease-symposia/limb-girdle-symposium-2019

    Jun
    22
    Sat
    2019
    The Dystroglycanopathies: 2019 Patient and Family Conference @ Coralville Marriot Hotel & Conference Center
    Jun 22 all-day

    Join us for The Dystroglycanopathies: 2019 Patient & Family Conference!

    REGISTRATION
    To register for the conference, please click here to download the registration form. Completed forms should be sent to the Center for Conferences via email (conferences@uiowa.edu), fax (319-335-4039), or mail (UI Center for Conferences, 250 CEF, Iowa City, IA 52242). You may also call the Center for Conferences directly to register over the phone at 319-335-4141.
    The deadline to register is May 31, 2019. 

    LOCATION
    Marriott Hotel & Conference Center
    300 E. 9th Street
    Coralville, IA 52241

    ROOM BLOCK
    Hotel rooms are available at a reduced rate ($115 per night + taxes and fees) at the Marriott for conference attendees. To reserve a room at the conference rate, please call the Marriott Hotel at 319-688-4000 and reference the “UI Wellstone Muscular Dystrophy Conference”. You may also book your room online by clicking hereYou must make your room reservations by May 31st in order to receive the conference rate.

     

     

    Jun
    28
    Fri
    2019
    The Speak Foundation 11th Annual Conference for Individuals with Neuromuscular Disorders & their Loved Ones @ Westin Buckhead Atlanta
    Jun 28 @ 4:00 pm – Jun 30 @ 2:00 pm
    Aug
    30
    Fri
    2019
    National LGMD Conference @ Hyatt Regency Chicago
    Aug 30 @ 2:00 pm – Sep 2 @ 6:00 pm
    Sep
    30
    Mon
    2019
    5th Annual LGMD Awareness Day @ Worldwide
    Sep 30 all-day
    Oct
    5
    Sat
    2019
    9th Annual Casino Night for CureLGMD2i @ Eden Resort & Suites
    Oct 5 @ 6:00 pm – 11:00 pm

    We will be hosting our 9th Annual Casino Night event on at the Eden Resort in Lancaster, PA on October 5th 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

    Oct
    12
    Sat
    2019
    3rd Annual Golf Outing for CureLGMD2i @ Crossgates Golf Club
    Oct 12 @ 9:00 am – 11:45 pm

    We will be hosting our 9th Annual Casino Night event on at the Eden Resort in Lancaster, PA on October 5th 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#: 80-0680447

    Oct
    15
    Tue
    2019
    MDA’s Public Policy and Advocacy Conference @ Grand Hyatt Washington
    Oct 15 @ 4:30 pm – Oct 17 @ 5:30 pm
    Nov
    8
    Fri
    2019
    LGMD Patient Event @ Wong Kerlee International Conference Center
    Nov 8 @ 9:30 am – 3:00 pm

    LOMA LINDA UNIVERSITY AND THE JAIN FOUNDATION

    are hosting the

    LGMD PATIENT EVENT

    RSVP by 10/15/2019 via email to patients@jain-foundation.org

    Vegetarian lunch included – please note in RSVP if you require gluten free or vegan

    Learn about:

    • Advancements and innovative technology in LGMD
    • Current and future directions for drug development
    • Orthotics, stretching and exercise
    • Diagnostics

    Ask Questions and connect with other patients

    Nov
    29
    Fri
    2019
    2nd International Congress on LGMD due to Calpain 3 Deficiency 3 @ IRCCS E. Medea
    Nov 29 @ 1:30 pm – Nov 30 @ 5:00 pm

    The event is open to healthcare professionals, patients and their families.

    Pre-registration is required.  Space is limited.

    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:
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