About Web of Hope
I started Web of Hope to educate people about an inexpensive and non toxic sugar compound called hydroxy propel beta cyclodextrin (HPBCD) and the relationship between cyclodextrin, HIV/AIDS and a rare cellular cholesterol disease my identical twins suffer from called Niemann Pick Type C. You may have learned of Web of Hope after hearing recent news about the sugar compound cyclodextrin in the media.
Soon after learning that my identical twin 5 year old daughters, Addi and Cassi, were diagnosed with a rare a fatal cholesterol storage disorder, I began researching the possibility of treating my daughters with cyclodextrin. Cyclodextrin is known to extract cholesterol in cell culture and is used throughout the food processing industry in products such as fat free butter and salad dressing. Little did I know that the Niemann Pick Type C gene on Chromosome 18 that is causing Addi and Cassi’s deadly cholesterol illness would also be the same gene responsible for helping the HIV/AIDS virus create itself in a person’s cells and that cyclodextrin kills the HIV/AIDS virus.
After months of research work, we were finally able to convince the FDA to allow our doctors to treat Addi and Cassi with cyclodextrin infusions based on promising mice data and cyclodextrin’s excellent safety profile. Addi and Cassi will be the first in the United States to receive cyclodextrin infusions which we hope will lead the way for other human studies.
After you spend some time learning about cyclodextrin and its potential remarkable therapeutic benefits for HIV/AIDS and Niemann Pick Type C, I hope you will help me build my Web of Hope community of supporters and help me raise awareness so that cyclodextrin treatments can be brought to millions of people worldwide.
I’m a M.O.M. to Addi and Cassi Hempel
Co-Founder, Spark Public Relations
Advisory Board, Children’s Rare Disease Network