Oct. 5 is a special day for our family as we celebrate Pause for The GFPD, the annual awareness day of The Global Foundation for Peroxisomal Disorders (GFPD). I invite the readers to join our family and PAUSE for families impacted by peroxisomal disorders in more than 40 countries around the world. Our daughter, Anastacia, is 42 years old and is one of fewer than 1,000 children living worldwide with a peroxisomal biogenesis disorder in the Zellweger spectrum (PBDZSD). We were told by the doctors when she was a year old to “take her home and love her, she will only live to be 3.″ Well, she has almost lived 40 years longer than they predicted. Anastacia is the light of our lives and anyone that has met her is forever change for the better. The Dayton Daily News did a story on her in 2003 when she turned 21 years old. She is still with us giving hope and love to other families like ours. PBD-ZSD is a rare, genetic, condition affecting multiple organ systems in the body, and is generally fatal in childhood. Pause for The GFPD is a day that brings our family hope. The GFPD is a 501(c)(3) nonprofit public charity founded in Tulsa, Oklahoma in 2010 to support families affected by peroxisomal disorders and to directly fund medical research. On Oct. 5, we are celebrating all that the GFPD has accomplished in the last 14 years in moving towards a cure for peroxisomal disorders. Most importantly, Pause for The GFPD celebrates the beautiful children affected by this rare, terminal condition. We invite you to help the GFPD – and our global 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 makes a difference. It gives families hope and can lead to new, lifesaving treatments. I encourage everyone reading this to get involved by visiting the GFPD website: www.thegfpd.org to learn about Pause for The GFPD celebrations in your area, ways you can help make a difference, and to learn more about the groundbreaking work the GFPD is doing around the world.
- Tony and Patty DelSorbo, Dayton