“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:

    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:

    Demystifying Genetic Test Reports: Understanding VOUS Part Two @ Virtual
    Aug 28 @ 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.

    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/

    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!

    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

    6th Annual LGMD Awareness Day
    Sep 30 all-day
    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

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