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 email@example.com.
Gene Therapy and Neuromuscular Disease Webinar
Tuesday, March 23 | 4 – 5 p.m. ET
Gene therapy has emerged as a treatment option for some neuromuscular disorders. This MDA Engage Webinar will explore what gene therapy is and how it works in neuromuscular diseases. The landscape of gene therapy research will also be discussed.
Speaker: Sanjay Bidichandani, MBBS, PhD, Genetics Section Chief and professor of Pediatrics at the University of Oklahoma Health Sciences Center
Lindsay N Alfano, DPT, PCS
Principal Investigator, Assistant Professor
The Abigail Wexner Research Institute at Nationwide Children’s Hospital
Center for Gene Therapy
To Register visit:
Maintaining Breathing Function with a Neuromuscular Disease
Tuesday, March 30 | 3 – 4 p.m. ET
Respiratory complications are common in neuromuscular disease (NMD). This webinar will shine a light on respiratory management for neuromuscular disorders. We will discuss early signs and symptoms to long term respiratory management strategies for both the pediatric and adult communities. Types of equipment for respiratory support will also be discussed.
Speaker: Debbie Rhodes, Respiratory Therapist and Manager at INTEGRIS Health
Learn more at
The closing date for applications is Friday 19th March 2021.
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