Scroll
To Top

Archives for: January 11th, 2022

Rare Disease Day: Finn’s Story

Written by Maia Craig on January 11, 2022
This is a photo of Finn.

Leading up to #RareDiseaseDay on February 28, NORD is sharing stories from patients and caregivers impacted by rare disease. This week, we are sharing Finn’s congenital muscular dystrophy (CMD) journey and his parent’s goal of connecting with others navigating a SELENON/SEPN1-related myopathy diagnosis. If you want… Read More

Far From “Normal”: Brenda’s Rare Disease Story

Written by Rohan Narayanan on December 27, 2021

I’m as “normal” as anyone else. I look completely “normal” (besides being in an orthopedic brace), I act completely “normal,” and my life is completely “normal”. I have been married for 40 years and have two adult children and three grandchildren. I have worked with my husband in his private optometry practice for 20 years and help with the daily care of our 11-year-old grandson. My life is full, happy, active and busy – as “normal” as I may… Read More

Dianna’s Story as a Rare Survivor

Written by Rohan Narayanan on December 3, 2021

Once, I was an intelligent, well-traveled and active African American entrepreneur in my middle 40’s who had opportunities to do wonderful things in the world. My passion was to help disabled people of all ages improve their lives. I was fortunate enough to be an icon as the first woman in technology to educate thousands of individuals in university and Fortune corporations, as well as offering my expertise in state, federal and international consulting. 

Further aspirations ended when I was diagnosed with stage IV Leiomyosarcoma (LMS) pelvic bone cancer and given 3-6 months to live. I am… Read More