Are you strong enough to be me? I have EB.: March 2015

Tuesday, March 31, 2015

Team EBRP Seattle Rock n Roll Marathon

We are excited to say this June we will be running the half marathon portion of the Seattle Rock n Roll Marathon on Team EBRP. EBRP stands for EB Research Partnership, an organization dedicated to spreading EB awareness and funding a cure. Many individuals have run in other races across the country for Team EBRP in order to raise money for EB research. To learn more about EB Research Partnership visit www.ebresearch.org As part of Team EBRP we are fundraising with a goal of $2,000.

To visit our crowdrise site and donate visit www.crowdrise.com/2015seattlerocknrollmarathon/fundraiser/allisonjuliodiaz

Thank you for your support!

Sunday, March 15, 2015

Big Brother

It's been awhile since we have updated Sam's blog and we have exciting news! On February 22nd Samuel became a big brother to Luka Skye Diaz :) Samuel is a great helper and is in love with his little brother!

What is EB?

WHAT IS EB?
Epidermolysis Bullosa is a painful, life threatening disease of the skin. Our son Samuel has the Recessive Dystrophic form (RDEB). In his case the bottom layer of his skin does not adhere properly to the other layers because the collagen 7 protein involved in this function is either missing or mis-shapen.
Because of this genetic defect even slight friction can cause several layers of skin to rip away creating horrific, painful wounds. Normal daily activities can cause blistering or tearing of the skin. Currently there is no cure for EB, only wound management as treatment. Despite the challenges Sam faces with EB, he displays amazing strength every day and inspires those around him.