Myopathies

I am tired. I want to stop struggling to stay afloat in this sea of unknowns and instead gently turn over and try floating on my back for a while. I want to catch my breath. I want to feel the calm. I want to see where it takes me - Living with HIBM

Myopathies

image by: Joshua Frase Foundation supporting Centronuclear and Myotubular Myopathy

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Have a little faith in me…

Faith- it can change a life.

I remember a lot about my childhood, both good and bad. What I don’t remember is ever feeling there was anything I couldn’t do. I thank several amazing adults in my life for this. Today I want to tell you about the best dance teacher in the entire world….so to back up a little let’s go to the year 1987.

I had to crawl up the stairs but when I first saw a ballet on PBS in my parent’s bedroom, I immediately began to imitate the prima ballerina. This I remember vividly. I told my mom I was going to be a ballerina when I grew up. I was maybe five years old and my mom thought a dance class might be good physical therapy.

That dance class…

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Resources

 Have a little faith in me…

I loved dancing but my muscle weakness limited what I could do. Long story short- Doreen saw beyond the limitation, placed me in the advanced ballet class and would later extend a scholarship to join her dance company.

Joshua Frase Foundation

The Joshua Frase Foundation (JFF) is a non-profit organization that has been funding research since 1995. JFF’s mission is twofold: To find a cure or treatment for centronuclear and myotubular myopathy and to support families whose lives are affected by these disorders.

Advancement of Research for Myopathies

ARM's purpose and goal is to accelerate biomedical research aimed at developing treatments for rare genetic disorders more prevalent in Middle Eastern community mainly GNE Myopathy, and skeletal muscle regeneration.

Kam Redlawsk

I draw and write about my life with a rare disability...and other things.

Living with HIBM

What it's like to live with a progressive neuromuscular disease.

Myopathy Musings

My name is Katie, I have a non-specific muscular myopathy, I love puppies, dancing and most of all, my husband. Ask me anything!

Myotubular Trust

The relief of disability and the extension of life for those suffering from myotubular myopathy, by promoting the study of, and research into, the treatment and cure of the muscle weakness caused by myotubular myopathy.

Neuromuscular Disease Foundation

The Neuromuscular Disease Foundation's (NDF) mission is to enhance the quality of the lives of people living with GNE Myopathy (also known as HIBM) through advocacy, education, outreach and funding critical research focused on treatments and a cure.

Pain is Inevitable. Suffering is a Choice

I’m coming up on 10 years of knowingly living with this disease. An entire decade. One fourth of my life.

RYR-1 Foundation

The mission of the RYR-1 Foundation is to support research leading to an effective treatment or a cure for RYR-1-related diseases.

Tara Talks GNE Myopathy

This is a forum for GNE Myopathy where I discuss the challenges and insights I encounter on my journey in living with a progressively "weakening" disease. GNE Myopathy is also known as Hereditary Inclusion Body Myopathy (HIBM).

World Without GNE Myopathy

The mission of WWGM is to generate awareness of GNE Myopathy among patients globally, accelerate development of a therapy for GNE Myopathy, make treatments available and accessible to all patients; and to provide support to patients for leading a fulfilling and safe life.

Patient

Myopathies are a heterogeneous group of conditions with diverse aetiologies. They usually affect muscle without involving the nervous system or any disorder of the neuromuscular junction.

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