My Nonprofit Reviews

sunnnytoo - charity reviews, charity ratings, best charities, best nonprofits, search nonprofits

sunnnytoo

558 profile views
3 reviews

Review for Cystic Fibrosis Foundation Headquarters, Bethesda, MD, USA

Rating: 1 stars  

Actually, client NOT SERVED. They told me2 days ago they would accept Medicare for the Acapella Choice and said they would "educate" their staff member, too. Yesterday, Joy Gross from the cffpharmacy services center called me to tell me they WOULD NOT fill the Rx for the Acapella Choice through Medicare. I will forward this complaint to Medicare, (I did this morning) , the entire CF community needs to be aware 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 Caucus 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 the all CF patients.

I've personally experienced the results of this organization in...

Never had a good experience with them. Highly self over rated and you should see the $$$ intake from all the Great Strides walks that is doled out to each state chapter and their CEO. Hardly any $ goes to patient care.

If I had to make changes to this organization, I would...

eliminate it and force the staff to be volunteers and the CEO would have to work for his money and not live off the backs of hard working families who falsely believe this organization is beneficial for the community and cystic fibrosis families and patients.

How would you describe the help you got from this organization?

None

How likely are you to recommend this organization to a friend?

No

How do you feel you were treated by this organization?

Badly

How did you find this group?

I have CF and gave the CFRI in California an excellent review recently. They actually do help patients and follow up and you get personal contact and correct information.

What, if any, change in your life has this group encouraged?

To get rid of phony, non profits, expose them for what they are. Moochers, blood suckers , parasites.

When was your last experience with this nonprofit?

2011

Role:  Client Served & had to order elsewhere, made a public complaint about the CFF.org.
 

Review for Cystic Fibrosis Foundation, Bethesda, MD, USA

Rating: 1 stars  

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.

I've personally experienced the results of this organization in...

Never had any good experience with them. HIghly self over rated and you should see the $ intake from all the Great Strides walks that is doled out to each state chapter and their CEO. Hardly any goes to patient care.

If I had to make changes to this organization, I would...

eliminate it and force the staff to be volunteers!

Role:  Client Served & Ordered elsewhere when they denied Medicare payment for Acapella filled via Medicare payment.
 

Review for Cystic Fibrosis Research Inc, Palo Alto, CA, USA

Rating: 5 stars  

I have CF Adult, diagnosed in 2008. CFRI has been very informative and is up-to-date, always. Many friends prefer this organization for their efficiency and personal assistance over several organizations that assist Cystic Fibrosis patients. They are very prompt when responding to a question, they sponsor several informative workshops throughout the year that are on a patient/parent relevant and at the patient's parent level of understanding. This is extremely beneficial for information and expert care. They work very hard and are very dedicated to this serious illness and can make a difference in life or death. I would contact CFRI as my first choice for information and care.

I've personally experienced the results of this organization in...

Received direct information from CFRI that enabled me to make specific decisions regarding this teenager with CF and her mother to assist a smooth transition to visiting the USA.

If I had to make changes to this organization, I would...

Like to see a list about 3-6 months out, which may be available for planning to travel to California. This may already be available, but currently, I can receive information as it is posted with adequate times, dates, reservations and expectations.

Role:  General Member of the Public & Medically sponsored a 16 year from Ukraine for CF care in the USA Aug through Oct 2010.