My daughter is in her 20s and has Cystic Fibrosis. We have worked with the CFF national (and the state affiliates) office since she was diagnosed. Their focus on using their resources wisely to fund research to find a cure has been a model for all rare disease organizations. Their success has been documented time and time again in the drug pipeline that continues to grow. They are extremely mindful about how they spend the money that is donated to them.
CFF also advocates on behalf of the entire community to ensure that there is access to care, pharmaceuticals, and medical equipment. While they may not be able fix every individual's need as those needs are so great, they put in the effort to ensure that families and patients are well supported.
I have over 25 years of involvement with the National Headquarters of the CFF. They have been a superb source of credible information for me, my family, friends and our son with CF. Robert Beale PhD, the tireless head of this foundation has made it a leader in non profit foundations for 'orphan diseases' Because of the fund raising ability and donations great strides have been made in CF research leading to the breakthrough in genetics, diagnosis and treatments. They sponsor many successful Clinical Trials, lend support regarding legal and insurance issues and support a cystic fibrosis authorized pharmacy. The CF foundation also accredits CF specialty clinics and physicians as well as holding regular CME meetings for professionals and for the general public.
Actually, client NOT SERVED! They told me yesterday they would accept Medicare for the Acapella Choice and said they would "educate" their staff member, too. Today, they called me to tell me they would NOT fill the Rx for the ACAPELLA CHOICE through Medicare. I will forward this as a complaint to Medicare and the entire CF community needs to be aware that this organization did not offer any additional help/resources for acquistion of this device. You are on your own and I would avoid this hugely, well endowed ,self serving organization. I will also notify the CF Congressional Congress members, yes! Our Congressmen need to know this organization is doing a lousy job and are choosy. They don't adhere to meet the needs of all CF patients.