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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

115 Stories from Volunteers, Donors & Supporters

1

Client Served

Rating: 5

CF Roundtable is an incredibly valuable source of information, particularly for the adult Cystic Fibrosis community of which I'm a part. The newsletter addresses nearly every aspect of living with Cystic Fibrosis, masterfully weaving in topics ranging from clinical trials and preclinical research to travel tips, legal information and everything in between. There aren't any other sources of such rich, varied and consistently high quality content for the adult CF community. I look forward to receiving the CF Roundtable in my inbox and I heavily rely on it as a source of trusted and useful information. CF Roundtable is a huge asset to the CF community!

1 thegiftofhealth

Volunteer

Rating: 5

The CF round table is a excellent newsletter for the CF community. Sharing feelings and ideas are so beneficial to the community. It helps families not to feel alone in the fight that we have all encountered. Keep up the good work!

Previous Stories
1

Volunteer

Rating: 5

The CF Roundtable is a great magazine. It helps the CF community to share their experiences and help others to feel that they are not alone in this fight. The articles are filled with heart warming stories which helps everyone to understand the battle that these people go thru on a daily basis. It gives great information for people with this disease and others that are not familiar with the disease. We need to get the word out to more people in order to make others aware of what CF is all about. Good work by all!

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1

Client Served

Rating: 5

I am a young adult who enjoys reading CF Roundtable. The stories are real and help me continue to learn about this disease. I am given insight into potemtial issues and struggles but also gives me hope to see the older population continue to grow. Aside from the stories, there is legal advice and medical updates. Its a mini one stop summary of things new in the CF world. The magazine ties me to the CF community without actually knowing these people and I know I'm not alone in this battle. I absolutely love it and would reccommend it to anyone fighting CF or their caregivers.

1 BrandiandRonnie E.

Client Served

Rating: 5

As a 34 year old Cystic Fibrosis patient, I value the information in the CF Roundtable! In fact, I have wrote and been published in it! What a great resource it is for us living day in and day out with this disease. This publication touches on subjects that we all deal with from insurance issues, to exercise, to new findings that come about in medical research. The staff is made up of those with CF, which to me makes it more credible (after all, you don't truly know our struggles unless you live a day in the life..). It is wonderful to be able to receive this publication as a free service to me and so many others. THANK YOU!!!!

1

Client Served

Rating: 5

CF Roundtable is a great publication. I am a 36 year old approaching the decision of a possible transplant. I have read great encouraging articles on so many different topics. It really puts into perspective that there are other people out there in your shoes. Life with CF can get discouraging - as hard as you try to keep yourself healthy and feeling good, that can change at the drop of a hat. Each time I read an edition, it gives me a little ray of hope that everything will be ok. Thanks for all of the great information!

1 Anne112

Client Served

Rating: 5

I am a 57 year old with CF and have found the CF Roundtable enormously helpful; I hadn't known about it (or realized there was such a great resource for CF adults) until the CF Clinic I go to told me about it a few years ago. From time management to issues with CFRD and the legal and medical issues columns...just knowing there a community of support out there is greatly comforting. What a wonderful group of people who devote their time to giving to the CF community!

1

General Member of the Public

Rating: 5

Superb group, with a wide array of CF info ranging from anecdotal tales to detailed research and recruitment for clinical trials. Thanks to USACFA and CF Roundtable, I'm more up on what's happening than my son's CF docs. I often share CF Roundtable info with my son's CF docs that they've not yet heard about. Love y'all, keep up the good work, and thank you.

Princetonmom

Volunteer

Rating: 5

The CF Roundtable has been helpful and a beacon of hope for us since our son was diagnosed at age 2. The practical advice and experiences have kept us on track with his care and he is doing very well at age 22! Thank you to CF Roundtable!

Previous Stories

Volunteer

Rating: 5

The CF Roundtable is a valuable source of practical information for families with CF. The insurance column by Beth Sufian is a must see every time. Our 21 year old son is in college and we are guided by the advice. The articles by adults with CF helps our son to get a better perspective on his life and his future.
This is a very important part of dealing with CF.

1

Client Served

Rating: 5

As the parent of two young adults with Cystic Fibrosis, the USACFA provides the adult community (of what is said to be a childhood illness) with numerous resources for which we are grateful. They are one of only a few that meet the direct needs of adults living with CF.

1 Jennifer395

Client Served

Rating: 4

I look forward to getting the newsletters and reading up on the latest drug therapies and other information happening in the CF world. They do a great job not only keeping us informed but providing hope, cheer and peace.

1 John286

Professional with expertise in this field

Rating: 5

They do a great providing information and support to adults living with this challenging disease.! I recommendit to all the patients I serve!

1

General Member of the Public

Rating: 5

MY SON HAS CYSTIC FIBROSIS & WE LIVE IN A RURAL COMMUNITY. THIS NEWS LETTER KEEPS US UP TO DATE ON ALL THE NEW THINGS HAPPENING WITH CF. THE NEWSLETTER GIVES ME HOPE AS A MOTHER THAT MY SON IS JUST LIKE ANY OTHER CF PATIENT. VERY HELPFUL & RESOURCEFUL INFORMATION.

1

General Member of the Public

Rating: 5

My son is a 14 year old boy with Cystic Fibrosis. CF Roundtable not only gives up to date medical information, but also help on how others are learning to live their lives while battling this disease. It's educational and also inspiring. They do a great job of funneling down all the massive amount of information and studies being completed into concise explanations and show how things can help our lives individually. LOVE my CF Roundtable!

1

General Member of the Public

Rating: 5

I appreciate the knowledge and helpfulness they have to offer. I'm constantly trying to stay on top of the latest advancements in the fight for a cure for cystic fibrosis.

1 Danyell W.

Client Served

Rating: 5

I am 32 years old with Cystic Fibrosis. I have received CF Roundtable for many years. CF Roundtable has given me in sight on medical & personal problems related to this disease. I find comfort & hope when I see other people with CF that are older than me in the newsletter. I look forward to getting CF Roundtable to see the developments with the medicines to help future generations. I enjoy the questions you can ask the lawyer because insurances can be very confusing. My husband, who is a nurse, enjoys reading CF Roundtable. It helps us both understand more about my disease through others perspective. Sometimes the articles give information about things that I am too afraid to ask or never thought about. Which helps me bring it up with my doctors. I plan on receiving CF Roundtable for many more years to come.

1

Client Served

Rating: 5

I am a 35 yr old CF mother of 2. My health is of utmost importance but taking the time to find all of the info that comes to me through the Roundtable just isn't possible. Reading the articles gives me hope....whether I needed at that moment or not. I will conticontinue to read and shate this site with many.

1 Vahna B.

Client Served

Rating: 5

My son has Cystic Fibrosis and the CF Round table newsletter keeps us informed on anything new happening with all research and any new medications. It also has many articles about people living with CF and how they deal with many issues from insurance,mental health,hospitalization just to name a few. I highly recommend this non profit.

1 Paul142

Board Member

Rating: 5

I have been a USACFA board member since 2001, and have written at least a dozen articles from 1997 through last year in CF Roundtable. The reason this organization was formed was for support of adults with CF. When it first started, only about 30 percent of CF patients were considered adults(over 18), and now the number is closer to 51%. This certainly cannot be contributed to CF Roundtable, but it is great to know that over half the CF population has this newsletter as a resource for them. I have personally learned much from this newsletter, and found many new faces and friends in the national CF community. They continue to be resources for me, and I will continue to support USACFA for as long as I am able.

1

Volunteer

Rating: 5

CF Roundtable has always been a strong support mechanism for me. It allows me to see what others in the CF community experience in good times and bad. I usually read the newsletter cover to cover and learn new things from what others do. CF Roundtable is also a good resource for new therapies in the pipeline as well as ideas in dealing with CF.

Previous Stories

Volunteer

Rating: 5

When I first heard about this newsletter 20 years ago, I had been looking for support and finding none. When I got my first issue of Cf Roundtable, I felt connected and less isolated. I usually read the newsletter cover to cover and sometimes a couple of times while waiting for the next issue. It gave me hope to read of others who were living longer and healthier lives with CF. It also allowed me to see how others with the same disease coped with their various trials and tribulations. I could relate to these people who wrote articles and became familiar with those who wrote often.
It is 20 years later and I find myself volunteering for the newsletter and still enjoy the articles from those who share their stories to offer support to alert others to a certain situation that can occur, for instance, after lung transplant or with CF-related diabetes or chronic prednisone use. I still find this newsletter and organization a useful in living with CF.
This year has been exceptional for the USACFA as they are now offering the newsletter for free to everyone and people are respondng very positively by subscribing in large numbers. It is an honor to be part of this organization and hopefully to be part of it for many more years.

General Member of the Public

Rating: 5

I know how hard my cousin works on the Newsletter and the impact it has on those with CF - it is an invaluable resource for those with CF.