‘Pause’ for rare genetic disorder

Oct. 5 is a special day for our family as we celebrate Pause for the annual awareness day of The Global Foundation for Peroxisomal Disorders (GFPD). I invite The Gazette readership to join our family and pause for families impacted by peroxisomal disorders.

Our daughter, Gwendolyn, is 5 years old and is one of fewer than 1,000 children living worldwide (only two in Iowa) with a peroxisomal biogenesis disorder in the Zellweger spectrum (PBD-ZSD). PBD-ZSD is a rare, genetic condition, generally fatal in childhood. Gwendolyn has faced her share of struggles (deaf, blind, liver failure, adrenal insufficiency) but she is the happiest child I’ve ever seen.

Pause for The GFPD is a day that brings our family hope. The GFPD is a nonprofit founded in 2010 to support families affected by peroxisomal disorders and fund medical research.

Pause for The GFPD on Oct. 5 celebrates the beautiful children affected by this rare, terminal condition. We invite you to help the GFPD — and our community of patients, families, caregivers, scientists, and medical professionals — raise awareness about the need for treatments and cures for this rare, genetic, and terminal disease.

Raising public awareness gives families hope and can lead to new, lifesaving treatments. I encourage everyone reading this to get involved by visiting the GFPD website: http://www.thegfpd.org, or find us on Facebook, Instagram, or Twitter @thegfpd to learn about Pause for The GFPD celebrations in your area, and ways you can help make a difference.

Natalie Clouse

Cedar Rapids