VOLUNTEERS NEEDED…LGMD “Spotlight Interviews” By telling your story and sharing your experiences, you can help others understand what it is like to live with LGMD. You play an important role in this global awareness campaign. If you are interested
NAME OF ORGANIZATION: The Speak Foundation WEBSITE: www.thespeakfoundation.com FACEBOOK: www.facebook.com/THESPEAKFOUNDATION WHAT LGMD SUB-TYPE DOES YOUR ORGANIZATION FOCUSES ON: All forms of neuromuscular diseases including LGMD. Is your organization a Non-Profit? If so, what type: U.S.-based 501 (c)(3) tax-exempt
LGMD “Spotlight Interview” Name: Anne Age: 56 yrs. old Country: United States LGMD Sub-Type: LGMD2A – also known as Calpainopathy At what age were you diagnosed: For having Muscular Dystrophy, I was diagnosed around 4 years of age. The specific
NAME OF ORGANIZATION: CureLGMD2i Foundation WEBSITE: www.curelgmd2i.com FACEBOOK: www.facebook.com/CureLGMD2i/ WHAT LGMD SUB-TYPE DOES YOUR ORGANIZATION FOCUSES ON: LGMD2i and The Dystroglycanopathies (FKRP) IF YOU FOCUS ON A SUB-TYPE, IS THERE A REGISTRY AND HOW CAN PATIENTS JOIN? FKRP
LGMD “Spotlight on Research” LGMD RESEARCHER: Kathryn Wagner, MD, PhD Affiliation: Kennedy Krieger Institute Role or Position: Professor and Director of the Center for Genetic Muscle Disorders What education and training did you have to arrive at your
LGMD “SPOTLIGHT INTERVIEW’ NAME: Anamaria AGE: 25 years old COUNTRY: Romania LGMD Sub-type: LGMD2A / Calpainopathy At what age were you diagnosed: I was diagnosed this year by the genetic testing of ”whole exome sequencing”. What were your
LGMD SPOTLIGHT INTERVIEW Name: Zia Age: 26 Country: Australia LGMD Sub-Type: Limb-Girdle Muscular Dystrophy type 2i AT WHAT AGE WERE YOU DIAGNOSED: I was diagnosed with Muscular Dystrophy at the age of two. After many tests and doctor visits, I
LGMD “Spotlight Interview on Research” LGMD RESEARCHER: Rita Perlingeiro Affiliation: University of Minnesota Role or Position: Professor of Medicine What education and training did you have to arrive at your current position? PhD in Physiology at the University of Campinas
NAME OF ORGANIZATION: Coalition to Cure Calpain 3 WEBSITE: CureCalpain3.org FACEBOOK: Coalition to Cure Calpain 3: Overcoming LGMD2A/Calpainopathy Twitter: @CureCalpain3 WHAT LGMD SUB-TYPE DOES YOUR ORGANIZATION FOCUS ON: LGMD2A, Calpainopathy IF
LGMD “SPOTLIGHT INTERVIEW” Name: Ralph AGE: 58 Yrs. Old Country: United States LGMD Sub-Type: LGMD2L / Anoctaminopathy At what age were you diagnosed: I started having symptoms at age 47, back in 2006 and was diagnosed by 2011 when
LGMD “Spotlight Interview on Research” LGMD Researcher: Louise Rodino-Klapac, Ph.D Affiliation: Nationwide Children’s Hospital and Myonexus Therapeutics, Inc. Role or Position: Associate Professor (NCH) and Chief Scientific Officer (Myonexus) What education and training did you have to arrive
LGMD “Spotlight Interview” – A Mother’s Perspective Mother’s Name: Aleksandra Country: The Netherlands Son’s LGMD Sub-Type: LGMD2D
NAME: Younis AGE: 14 yrs. old COUNTRY: Syria LGMD SUB-TYPE: LGMD 2C
LGMD Spotlight Interview Name: Jill Age: 33 yrs. old Country: United States LGMD Sub-Type: LGMD2i
LGMD “Spotlight Interview” Name: Deceena Age: 31 yrs. old Country: USA LGMD Sub-Type: LGMD2A – also known as Calpainopathy
LGMD “SPOTLIGHT INTERVIEW” Name: Fred Age: 36 yrs. old Country: United States LGMD Sub-Type: LGMD2A / Calpainopathy
LGMD “SPOTLIGHT INTERVIEW” Name: Vicki Age: 44 yrs. old Country: Canada LGMD Sub-Type: LGMD2A / Calpainopathy
LGMD “SPOTLIGHT INTERVIEW” Name: Kourtney Age: 23 yrs. old Country: USA LGMD Sub-Type: LGMD2B / Miyoshi Myopathy
LGMD “Spotlight Interview” Name: Becky Age: 35 yrs. old Country: USA LGMD Sub-Type: LGMD2B
LGMD “SPOTLIGHT INTERVIEW” Name: Lori Age: 47 yrs. old Country: United States LGMD Sub-Type: LGMD2i
LGMD “SPOTLIGHT INTERVIEW” NAME: Hillary AGE: 32 yrs. old COUNTRY: USA LGMD Sub-Type: LGMD2A / Calpainopathy
LGMD “SPOTLIGHT INTERVIEW” Name: Monkol AGE: 38 Country: United States LGMD Sub-Type: LGMD2G (also known as Telethoninopathy)
LGMD “Spotlight Interview” Name: Karen Age: 54 Yrs. old Country: USA LGMD Sub-Type: LGMD 2I
LGMD “SPOTLIGHT INTERVIEW” Name: Felix Age: 35 yrs. old Country: Brazil LGMD Sub-Type: LGMD2A / Calpainopathy
LGMD “ Spotlight Interview” Name: Asher Age: 10 yrs. old Country: New Zealand LGMD Sub-Type: Unknown
LGMD “SPOTLIGHT INTERVIEW” Name: Ben Age: 23 yrs. old Country: Hong Kong LGMD Sub-Type: LGMD2A / Calpainopathy
Name: Nicole AGE: 37 COUNTRY: United States LGMD Sub-Type: LGMD 2J (Titinopathy)
Name: Ralph Age: 24 yrs. old Country: South Africa LGMD Sub-Type: LGMD2B
LGMD SPOTLIGHT INTERVIEW Name: Amanda Age: 34 Country: Canada LGMD Sub-Type: LGMD2C
LGMD “Spotlight Interview” NAME: Jill AGE: 42 COUNTRY: USA LGMD Sub-Type: autosomal dominant Emery-Dreifuss muscular dystrophy (LMNA mutation/LGMD1B) AT WHAT AGE WERE YOU DIAGNOSED: I was diagnosed when I was 4 years old. WHAT WERE YOUR FIRST SYMPTOMS: I was
LGMD SPOTLIGHT INTERVIEW NAME: Karin AGE: 53 COUNTRY: United States LGMD Sub Type: Unknown AT WHAT AGE WERE YOU DIAGNOSED? I had been having problems years before my diagnosis. It wasn’t until I hit 40 that my life began to
LGMD “SPOTLIGHT INTERVIEW” Name: Darlene Age: 65 yrs. old Country: United States LGMD Sub-Type: Non-Dysferlin Miyoshi Myopathy At what age were you diagnosed: I was diagnosed at the age of 64. What were your first symptoms: In retrospect,
LGMD Spotlight Interview Name: Cecilia AGE: 36 years Country: Argentina LGMD Sub-Type: LGMD2A/Calpainopathy At what age were you diagnosed? I was diagnosed when I was 12 years old. What were your first symptoms: I began walking on my toes.
LGMD “Spotlight Interview” Name: Keisha Age: 31 yrs. old Country: United States LGMD Sub-Type : Unknown At what age were you diagnosed: I was diagnosed about 5 years ago at the age of 25-26. What were your first symptoms:
LGMD “SPOTLIGHT INTERVIEW” Name: Andrea Age: 42 yrs. old Country: United States LGMD Sub-Type: Collagen 6 Congenital MD (Intermediate on the spectrum between Bethlem and Ullrich CMD) AT WHAT AGE WERE YOU DIAGNOSED: I was first diagnosed at age 6
LGMD “Spotlight Interview” Name: Brenda Age: 55 yrs. old Country: United States LGMD Sub-Type: LGMD2A – also known as Calpainopathy At what age were you diagnosed: I was diagnosed when I was 50 years old. What were your first
LGMD “Spotlight Interview” Name: Adriana Age: 48 years old Country: Argentina LGMD Sub-Type: LGMD2B WHAT AGE WERE YOU DIAGNOSED: I was diagnosed at the age 20. WHAT WERE YOUR FIRST SYMPTOMS: My first symptoms included: difficulty climbing stairs, tiredness,
LGMD “SPOTLIGHT INTERVIEW” Name: Nitesh Age: 27 years old Country: India LGMD Sub-Type: LGMD (sub-type unknown) At what age were you diagnosed: I was diagnosed at the age of 10. What were your first symptoms: My first symptoms included:
LGMD “SPOTLIGHT INTERVIEW” Name: Amie Age: 31 yrs old Country: United States LGMD Sub-Type: LGMD2J (Titinopathy) At what age were you diagnosed: I was just diagnosed at the age of 31 with LGMD2J – also known as Titinopathy. What
LGMD SPOTLIGHT INTERVIEW Name: Anna Age: 36 yrs. old Country: Canada LGMD Sub-Type: LGMD2I At what age were you diagnosed: I was initially diagnosed with a “non- specific muscle myopathy when I was a young child (sometime in grade
LGMD “SPOTLIGHT INTERVIEW” NAME: Michele AGE: 52 Yrs. Old COUNTRY: United States LGMD Sub-Type: LGMD2A – Calpainopathy AT WHAT AGE WERE YOU DIAGNOSED: I was initially diagnosed with an unspecified form of muscular dystrophy at the age of
LGMD “Spotlight interview” Name: Kelci Age: 23 yrs. old Country: Australia LGMD Sub-Type (if known): LGMD2J – Titinopathy At what age were you diagnosed: I was just recently diagnosed at the age of 23. What were your first symptoms:
LGMD “Spotlight Interview” Name: Tony Age: 32 Country: United States LGMD Sub-Type: LGMD2i AT WHAT AGE WERE YOU DIAGNOSED: I was diagnosed with LGMD around the age of 26 at the Cleveland Clinic and then officially diagnosed with 2i
LGMD “SPOTLIGHT INTERVIEW” Name: Scott Age: 48 yrs. old Country: United States LGMD Sub-Type: LGMD 2L – also known as Anoctaminopathy At what age were you diagnosed: Although my MD began about 15 years ago, I was finally diagnosed recently
LGMD Spotlight interview: Name: Steven Age: 57 yrs. old Country: United States LGMD Sub-Type : LGMD (sub-type unknown) At what age were you diagnosed: I was diagnosed at the age of 43. What were your first symptoms: Vague
LGMD Spotlight interview – 09/02/2016 Name: Melanie Age: 29 yrs. old Country: Germany LGMD Sub-Type : LGMD2i (heterozygous type) At what age were you diagnosed: I was diagnosed at the age of 4 by having a muscle biopsy. What
LGMD “Spotlight Interview” NAME: Melanie AGE: 33 COUNTRY: USA LGMD Sub-Type: LGMD2b (Dysferlinopathy/miyoshi myopathy) AT WHAT AGE WERE YOU DIAGNOSED: I was diagnosed one week before my 29th birthday. WHAT WERE YOU FIRST SYMPTOMS: I could not
07/26/2016 – LGMD “Spotlight Interview” NAME: Maram AGE: 26 years old COUNTRY: Palestine LGMD Sub-Type: LGMD2E At what age were you diagnosed: I was diagnosed with muscular dystrophy at the age of 10. When I was 26 years old, I
LGMD “SPOTLIGHT INTERVIEW 07/10/2016 Name: Jonathan Age: 54 yrs. old Country : England LGMD Sub-Type : Not known AT WHAT AGE WERE YOU DIAGNOSED? Initially when I was 11 (1973), I was diagnosed with Congenital Muscular Myopathy. No further action
06/24/2016 LGMD “Spotlight Interview” Name: Donna-Marie Age: 32 yrs. old Country: United Kingdom LGMD Sub-Type: LGMD2i At what age were you diagnosed: I stared tests at 12 years old, had a Muscular Dystrophy diagnosis at 13 and the