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2018 Top-Rated Nonprofit

USACFA, publishers of CF Roundtable

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Nonprofit Overview

Causes: Digestive Diseases & Disorders, Health, Lung Diseases

Mission: As an organization operated entirely by adults with CF who volunteer their time, our mission is to provide a source of information and education for adults with CF regarding the basis, nature and progression of CF, the latest treatments and research, and to assist in the psychosocial aspects of coping on a day-to-day basis. This is accomplished by publishing a free, quarterly newsletter called CF Roundtable, and through our website and social media sites.

Results: The US Adult Cystic Fibrosis Association now has over 3000 subscribers to the CF Roundtable newsletter, website and our social media platforms such as Twitter, CF Roundtable FB, CF Connect FB and LinkedIn. CF Roundtable newsletter is available in print (snail mail), by email (PDF) or online through our website when a person subscribes. Anyone can subscribe to learn more about CF and its effects on adults with CF and their families.

Target demographics: Adults with Cystic Fibrosis

Direct beneficiaries per year: Over 3000 subscribers and 13 college students with scholarships.

Geographic areas served: the United States with individuals and organizations within the CF Community

Programs: 1. CF Roundtable, our national quarterly newsletter available for free in print or online via our website, www.cfroundtable.com. 2. Website blog, resources, links to Facebook, Twitter and LinkedIn.

Community Stories

116 Stories from Volunteers, Donors & Supporters

1

Board Member

Rating: 5

USACFA (publisher of CF Roundtable) has always been a beacon of advocacy in the CF community. Their publication covers many avenues of living with CF, and always offers a well-organized, thought-provoking, and optimistic tone for the reader. So thankful for all that they do, and I'm honored to work with such a passionate group of people.

1

Board Member

Rating: 5

As an adult with cystic fibrosis, CF can be an isolating disease. CF patients are not allowed physical contact with each other and the CF Roundtable provides a critical outlet for patients where we can connect and share experiences and knowledge. The publication is diverse and addresses a wide variety of issues within the CF community, including social and financial challenges, seeking higher education, working, traveling and clinical innovations. There really is no comparable publication in the CF community!

1

Board Member

Rating: 5

I have been reading CF Roundtable for many years and am proud to now be a part of the organization. It is a great resource for those with CF to learn about studies and exciting news in the CF world. But it is also a great way to connect with other CF adults and their stories, via the quarterly newsletter and online on the CFR blog. I highly recommend this organization for anyone with CF.

1

Client Served

Rating: 5

CF Roundtable, produced by USACFA, is an invaluable resource for anyone dealing with CF, whether it be patient, caregiver, or medical professional. CF Roundtable provides first hand accounts of what it’s like to actually live with CF and is also a fine source of information and research. CF Roundtable is inspirational, to say the least, as are the volunteers who produce it.

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2

Client Served

Rating: 5

CF Roundtable is one of the most valuable resources currently available for adults with CF as well as caregivers of those with CF. It provides a unique perspective of living with the disease as well as practical information and research. Given the fact that it is produced by volunteers who all have CF makes it particularly remarkable. Kudos to those who do such a fine job of keeping the CF community so well-informed and so connected.

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1

Professional with expertise in this field

Rating: 5

As a 52 year old with, I have been reading, enjoying and benefiting from the roundtable for about a year. It is an important resource for people with CF, parents and family members, providing information about scientific developments in easy to understand language. Thanks to all the people working on this.

1 Dawn133

General Member of the Public

Rating: 5

As a 49 yo CFer, I have been reading, enjoying and benefiting from the Roundtable since its inception many moons ago. It is an important resource for people with CF, parents and family members, providing information about scientific developments in real-speak, a column highlighting studies and news related to CF, ideas and stories written by USACFA members and guest writers on how not only to live with CF, but thrive. It has done a great job keeping up with the exciting and dramatic developments in medication and treatments. Roundtable is a critical tool for a small community, bringing us together and keeping us informed, inspired and hopeful. A treasure kept alive by incredibly dedicated people for whom I am very thankful!

1

Client Served

Rating: 5

The CF Roundtable provides a very informative newsletter for those with cystic fibrosis. I have learned a lot from it. It also has very good blog posts about important news that comes up in between newsletters. It brings a sense of community to those with CF as well as understanding to the many complexities of this challenging disease.

1

General Member of the Public

Rating: 5

Awesome organization! Community sourced information that is important for all members of the community. Special focus on adults living with CF. Would highly recommend this organization to anyone looking to stay up on all aspects of cystic fibrosis, science, social and more.

1

General Member of the Public

Rating: 4

My wonderful wife has CF and USACFA (and the CF Roundtable) are an invaluable source of information that helps to keep me up-to-date on the latest CF news but also serves as a space of inspiration and reflection with every issue. Thank you to the USACFA team and all of the incredible CFers out there. You're the best!

1 Meranda S.

Board Member

Rating: 5

I have been a board director for USACFA since 2013. Prior to joining USACFA I was a long-time reader of CF Roundtable, which is published by USACFA. The board directors are dedicated to educating, empowering and sharing valuable information with the CF community. I am honored to be part of this organization!

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1

Volunteer

Rating: 5

USACFA is an excellent non-profit organization serving adults living with Cystic Fibrosis. CF Roundtable is a useful and relevant source for information pertaining to CF including patient experiences and clinical trials.

1

Volunteer

Rating: 5

This is a great source of support fr those who have cf and their families.

Board Member

Rating: 5

The US Adult CF Assn (USACFA) is an excellent organization that I have been proud to be part for 7 years. CF Roundtable and the accompanying website are tremendous support for me and, I believe, for the CF community. I'm able to meet others with CF through the CF Roundtable social media sites, share our stories, learn from each other and laugh too.
The newsletter is engaging and chockfull of information on all aspects of CF. I look forward to its arrival in my mailbox. I encourage any adult with CF to subscribe to it!

Previous Stories

Volunteer

Rating: 5

CF Roundtable is fabulous source of support for me, my husband and family. The articles are so informative and inspiring such as Beth's legal and Laura's research updates, Isa's spirituality, Julie's Wellness and Kathy's getting older columns. The focus topics often leave me chuckling, commiserating, awed or taking notes depending on the topic. I read it cover-to-cover as do members of my family. We feel great after reading from the validation that there is world out there that understands!

1

Board Member

Rating: 5

As the publishers of CF Roundtable newsletter, the US Adult Cystic Fibrosis Association provides an important source of connection, information, and support to an often isolated and small orphan disease population. USACFA is run by adults with CF, for adults with CF and their care-partners and families. I was honored to join the Board of this organization last year after several years of readership and contribution.

1

Board Member

Rating: 5

I have been reading CFR for a while and love the mission. It is great to have a publication that is written by and for people with CF. We just "get" each other.

1 Stephanie167

Board Member

Rating: 5

I have the honor and privilege of serving on the board of USACFA. I've read the newsletter CF Roundtable since the 90s. It has always been such a great source of inspiration and information.

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2

Volunteer

Rating: 5

CF Roundtable is a great publication published by USACFA. In addition they have great information posted on their website and their Facebook page. USACFA provides useful information for the health of both the mind and body.

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1

General Member of the Public

Rating: 5

Roundtable is a wonderful resourse for support, information, sense of community and hope for all those coping with CF.

2

General Member of the Public

Rating: 5

Super informative for non CF persons, and also for persons with CF.

3

General Member of the Public

Rating: 4

As husband to someone with CF, the CF Roundtable gives good info and support to me. I read every issue, cover to cover. Excellent.

2

Board Member

Rating: 5

This publication has been a wonderful source of information and support for me for over 2 decades!

1

Client Served

Rating: 5

USACFA’s publication CF Roundtable has been one of my major sources for information about Cystic Fibrosis for the past 10 years. It was first introduced to me by my CF Center and I’ve been a subscriber ever since.

Each issue is eagerly anticipated. Upon its receipt, it is immediately skimmed. Then, during the next two weeks it is read in detail.

While almost all of each issue is of interest, I especially like the regular “Ask The Attorney”, “Speeding Past 50”, and “Information From The Internet” articles. As a 73 year old with CF, seeing the increasing ages of people in the "Milestones" section has been very encouraging.