SPOTLIGHT INTERVIEWS
Are you an Individual living with limb-girdle muscular dystrophy (LGMD)? A researcher working to find a cure and treatment for LGMD? A clinical staff member working with the LGMD community or a representative from an organization focused on LGMD? If so, please consider volunteering to be featured in an LGMD Spotlight Interview. By telling your story and sharing your experiences, you can help raise awareness of LGMD. You can play an important role in this global awareness campaign.
INDIVIDUALS WITH LGMD
INDIVIDUAL WITH LGMD: Jasmine
Name: Jasmine Age: 24 years old Country: USA LGMD Sub-Type: LGMD 2A/R1 calpain 3-related At what age were you diagnosed? I was just recently diagnosed at the age of 24. What were your first [...]
INDIVIDUAL WITH LGMD: Maria
Name: Maria Age: 29 years old Country: USA LGMD Sub-Type: LGMD 1B At what age were you diagnosed: Initially, I was diagnosed at age two with SMA. I was then re-diagnosed at [...]
INDIVIDUAL WITH LGMD: Kae
Name: Kae Age: 29 yrs. old Country: Canada LGMD Sub-Type: LGMD 2B/R2 Dysferlin-related / Miyoshi Myopathy At what age were you diagnosed? I was diagnosed with LGMD when I [...]
LGMD RESEARCHERS
LGMD RESEARCHER: Katherine Mathews
LGMD Spotlight Interview on Research LGMD RESEARCHER: Katherine D. Mathews Affiliation: University Of Iowa, Departments of Pedaitrics and Neurology Role or Position: Professor, Departments of Pediatrics and Neurology Vice Chair of Cinical Investigation, [...]
LGMD RESEARCHER: Antoine Dufour
“LGMD SPOTLIGHT ON RESEARCH” Researcher: Antoine Dufour Affiliation: University of Calgary Role or Position: Assistant Professor What education and training did you have to arrive at your current position? [...]
LGMD RESEARCHER: H. Criss Hartzell
"LGMD SPOTLIGHT ON RESEARCH" LGMD RESEARCHER: H. Criss Hartzell Affiliation: Emory University School of Medicine Role or Position: Professor What education and training did you have to arrive at your current position? B.A. Lawrence [...]
LGMD CLINIC STAFF
LGMD CLINIC STAFF: Ursula Moore
LGMD Clinic Staff: Ursula Moore Affiliation: John Walton Muscular Dystrophy Research Centre Role or Position: Medical Doctor and PhD Candidate What education and training did you have to arrive at your current [...]
LGMD CLINIC STAFF: Lauren Brady
LGMD Clinic Staff: Lauren Brady Affiliation: McMaster Children’s Hospital, Hamilton, Ontario, Canada Role or Position: Genetic Counsellor What education and training did you have to arrive at your current position? I completed [...]
LGMD CLINIC STAFF: Rasha El Sherif
LGMD Clinic Staff: Dr. Rasha El Sherif MD, PHD Affiliation: Myocare National Foundation Role or Position: Director What education and training did you have to arrive at your current position? I completed [...]
LGMD ORGANIZATIONS
ORGANIZATION: Stichting Spierkracht
LGMD ORGANIZATION: Stichting Spierkracht WEBSITE: www.stichtingSpierKracht.com FACEBOOK: https://www.facebook.com/stichtingspierkracht.nl INSTAGRAM: https://www.instagram.com/stichting_spierkracht WHAT LGMD SUB-TYPE DOES YOUR ORGANIZATION FOCUSES ON: We focus on LGMD2D / R3 Alpha Sarcoglycan-related IF YOU FOCUS ON A SUB-TYPE, IS [...]
ORGANIZATION: Inclusive
ORGANIZATION: Inclusive WEBSITE: https://www.iminclusive.com FACEBOOK: https://www.facebook.com/Iminclusive INSTAGRAM: @iminclusive IS THERE A SPECIFIC LGMD SUB-TYPE YOUR ORGANIZATION FOCUSES ON? * Inclusive supports people living with LGMD, and Inclusive works towards making online and offline environments [...]
ORGANIZATION: Cure VCP Disease, Inc.
NAME OF ORGANIZATION: Cure VCP Disease, Inc. WEBSITE: https://www.curevcp.org FACEBOOK: https://www.facebook.com/curevcpdisease/ TWITTER: @LostTexanInGA WHAT LGMD SUB-TYPE DOES YOUR ORGANIZATION FOCUSES ON: VCP diseases and specifically Inclusion Body Myopathy associated with Paget’s [...]
