LOMA LINDA UNIVERSITY AND THE JAIN FOUNDATION
are hosting the
LGMD PATIENT EVENT
RSVP by 10/15/2019 via email to firstname.lastname@example.org
Vegetarian lunch included – please note in RSVP if you require gluten free or vegan
- Advancements and innovative technology in LGMD
- Current and future directions for drug development
- Orthotics, stretching and exercise
Ask Questions and connect with other patients
The event is open to healthcare professionals, patients and their families.
Pre-registration is required. Space is limited.
***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.
**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:
Questions? Contact Carrie Stephan 319-356-2673; email@example.com
REGISTER BY JULY 14TH IF INTERESTED IN ATTENDING
Event Chair: Dr. Colin Quinn, Assistant Professor of Clinical Neurology, University of Pennsylvania
- 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: firstname.lastname@example.org | 1-833-ASK-MDA1 (1-833-275-6321)
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 email@example.com.
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:
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 firstname.lastname@example.org.
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
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/
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.
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!
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*
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 email@example.com
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.
- Limb girdle muscular dystrophy: Wednesday 30 September, 10 – 11.35am > book the LGMD seminar
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
The Speak Foundation is hosting an important webinar with ML BIO SOLUTIONS. ML BIO SOLUTIONS will present “A Promising New Oral Treatment for LGMD2I: An Update on the Development of BBP-418 (Ribitol).” Sign up at: https://us02web.zoom.us/…/register/WN_zz63FN67TLqhYjC6kVRbyw.
October 9, 2020; Time: 2-4 pm Eastern Time
ML Bio Solutions is advancing the first-ever oral treatment for LGMD2I – BBP-418 (Ribitol). This treatment may enhance, and partially compensate for, diminished muscle function caused by the genetic driver of the disease. Join us to learn more about this treatment, the drug development process, and the status of the BBP-418 clinical studies.
Our panelists are Douglas Sproule, MD (Chief Medical Officer, ML Bio Solutions) and Nicholas Johnson, MD (Principle Investigator for the BBP-418 Lead-in Study).
The webinar, hosted by the Speak Foundation, is free and open to patients, family members and interested others.
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.
Thank you so much for your interest and support!
Keith & Kelly Brazzo,
Co-Founders of CureLGMD2i
590 Centerville Road #340
Lancaster, PA 17601
Tax ID#: 80-06804
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 firstname.lastname@example.org.
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