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LGMD D1 DNAJB6-related

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INDIVIDUAL WITH LGMD: Natasha

January 12, 2020|Individuals with LGMD - Interviews, LGMD D1 DNAJB6-related, LGMD1D|

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

October 22, 2019|LGMD D1 DNAJB6-related, LGMD Organization - Interviews, LGMD1D, ORGANIZATION|

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

October 1, 2019|Individuals with LGMD - Interviews, LGMD D1 DNAJB6-related, LGMD1D|

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 [...]

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