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Super E "Hey little fighter, It will soon be brighter."

Sharing E's journey and accomplishments, check here for more of his story ---> read about page

Latest journal entry

Ethan's Journey! Youtube Video Post

Ethan's says hi to all his friends and family! Thought I would share on here a video I made last month to help raise awareness for Ethan's rare disease, Nemaline Myopathy. We highlighted a few of his struggles & accomplishments in his 2 years of being Super E so far. Enjoy & lots of love from us!!!
"Nemaline Myopathy is considered to be one of the most devastating childhood muscle diseases but it gets far too little attention." -AFBS

Ethan is considered to be on the more severe side and is very medically complex. There are a few different gene mutations now that make up NM, NEB & ACTA1 genes are most common. Ethan's is on the ACTA1 gene.

Did you know that severe forms show up to 66% mortality rates before the age of two? These are devastating statistics and we need to find a cure or treatment so our children can live stronger and healthier lives.

Please help us by checking out the foundation that is directly funding research for NM here:
Directly donate to the foundation for research here:

If you or your family member have a congenital muscle disease, take a look here for information on registering for the CMD Tissue Repository to be registered & help bridge the gap between researchers & patients.

Video made with Adobe Premiere Clip App