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: Peter
Name: Peter Age: 10 Country: USA LGMD Sub-Type: LGMD 2C/R5 gamma-sarcoglycanopathy * Completed by Peter's mother At what age were you diagnosed? I was diagnosed at the age of 9. Mom and Dad started noticing [...]
INDIVIDUAL WITH LGMD: Jacob
Name: Jacob Age: 6 years old Country: United States LGMD Sub-Type: LGMD2D / R3 * * * Completed by Jacob’s parents, Josh & Rachel At what age were you diagnosed? Jacob was diagnosed [...]
INDIVIDUAL WITH LGMD: Heather
Name: Heather Age: 60 years old Country: USA LGMD Sub-Type: LGMD2A/R1 calpain 3-related At what age were you diagnosed? I was diagnosed at the age of 30. What were your first SYMPTOMS? My [...]
LGMD RESEARCHERS
LGMD RESEARCHER: Pia Elustondo
LGMD RESEARCHER: Dr. Pia Elustondo Affiliation: AGADA Biosciences Role or Position: Director of Research What education and training did you have to arrive at your current position? I have a broad background; I studied biochemistry [...]
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 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
LGMD ORGANIZATION: UILDM LGMD Group
ORGANIZATION: UILDM LGMD Group WEBSITE: https://www.uildm.org/ FACEBOOK: https://www.facebook.com/uildm.naz TWITTER: https://twitter.com/UILDMnazionale WHAT LGMD SUB-TYPE DOES YOUR ORGANIZATION FOCUSES ON: UILDM LGMD Group doesn’t focus on a specific LGMD sub-type. It refers to all LGMD types. [...]
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 [...]
