INDIVIDUAL WITH LGMD: Natasha
LGMD "SPOTLIGHT INTERVIEW" Name: Natasha Age: 25 years old Country: United States LGMD Sub-Type: LGMD D1 DNAJB6-related (Formerly LGMD type 1D) At what age were you diagnosed: I was diagnosed at the age of 23. What were your first symptoms: Our subtype is late onset so I currently have no symptoms although growing up there were small things that make more sense now that I know of my diagnosis. Growing up, I couldn’t run as fast as my peers and I had trouble in dance getting up from the ground without using my hands, as example. Do you have other [...]
ORGANIZATION: LGMD-1D DNAJB6 Foundation
NAME OF ORGANIZATION: LGMD-1D DNAJB6 Foundation WEBSITE: www.lgmd1d.org FACEBOOK: https://www.facebook.com/LGMD.1D WHAT LGMD SUB-TYPE DOES YOUR ORGANIZATION FOCUSES ON: LGMD-1D, although we are currently a registry for LGMD 1A to 1H IS THERE A LGMD PATIENT REGISTRY? Yes, it can be accessed at www.lgmd1d.org Is your organization a Non-Profit? If so, what type: Yes, we are established an a 501 (c)(3) non-profit organization WHAT INSPIRED THE CREATION OF YOUR ORGANIZATION: Our family's long history of LGMD-ID and 40-year pursuit for a cure! We were inspired by the GRASP-LGMD project sponsored by the MDA. WHAT IS YOUR ORGANIZATION’S MISSION: [...]
Individual with LGMD: William
LGMD “Spotlight interview” Name: William Age: 62 years old Country: United States LGMD Sub-Type: LGMD D1 DNAJB6-related (Formerly LGMD type 1D) At what age were you diagnosed: I was clinically diagnosed at the age of 40 and then 5 years later, at the age of 45, I received genetic confirmation of my LGMD 1D diagnosis. What were your first symptoms: As a child I was slow. Around the age of 45, I experienced difficulty running. Do you have other family members who have LGMD: Yes, my brother who is 67 has LGMD1D and so does my daughter. What do you [...]
