Beth Songer's Page

NATIONAL ORGANIZATION FOR RARE DISORDERS, INC.

2015 Running for Rare Diseases Team!

Boston, Massachusetts

Beth Songer's Page

This year I will be running my third marathon in my third state with the Running for Rare Diseases team.  I grew up in Rhode Island and I'm really excited to be running the Providence Marathon on May 3, 2015 in front of a hometown crowd.  I will be fundraising for the same initiative as last year's Boston Marathon:  The Undiagnosed Diseases Program through NORD and the NIH.  Our fundraising allows access to the diagnostic testing required to be enrolled in the program for those who otherwise could not afford it.      

This year I'm paired up with a mother and daughter named Rhonda and Kaela.  They're part of the Hereditary Angioedema (HAE) community.  HAE is a rare inherited disease that can cause considerable swelling in specific parts of the body, including the abdomen, face, and throat.  HAE is a rare disease; it affects only about 1 in 10,000 to 50,000 individuals. And because HAE can resemble other conditions, such as allergies or stomach problems, diagnosis is often delayed. It is my pleasure to use this year's marathon as a platform to raise awareness for their community, and I hope I represent them with pride.  For more about Rhonda, Kaela and their life with HAE, see their video on my page.

 

Thank you so much for your support of this very important initiative.

   

This page is no longer accepting donations
$1,000
goal
$1,184
raised
100%