The Forward’s August 4 article, “Gaucher Disease Patients Get New Hope From Drug,” does not in any way represent the views or opinions of the National Gaucher Foundation. They are, in fact, only those of Cyndi Frank, a patient. Therefore the NGF should not have appeared in that article in any manner.
The NGF does not advocate for any one treatment or pharmaceutical company, as each patient’s needs are different. Only a patient and his or her physician can make an intelligent decision about the proper treatment.
The NGF, a not-for-profit organization, is an unbiased voice for the entire Gaucher community. Our goal is to always present objective and educational information. We worry that the article’s inference that the oral treatment — which has yet to be FDA-approved — is superior to the life-saving drugs that have been and are currently on the market, is misleading. We feel that the article suggests NGF’s endorsement of this treatment. We would like to set the record straight and say that this is not true — it is imperative that we remain unbiased in order to serve the community in the best possible way.
Rhonda P. Buyers
National Gaucher Foundation