Grateful Space

As the mother of a child with CF and volunteer for the CF Foundation, I know first-hand the extraordinary things that Dr. Bob Beall has done for our community, and I am grateful for the legacy of hope that he leaves behind. 

| 4 min read
Rebecca Schroeder

Yesterday, Dr. Bob Beall, long-time president and CEO of the Cystic Fibrosis Foundation, handed over the reins to his successor, Dr. Preston Campbell.

Over the last several years, I had the opportunity to get to know Dr. Beall through my volunteer work with the Foundation. I deeply admire him, both as a brilliant professional and true friend.

If you are new to the CF community, you may have heard of Dr. Beall but may not know all that he has done to transform this disease. Just a few generations ago, children diagnosed with cystic fibrosis were not expected to live long enough to attend elementary school. Today, 50 percent of people with CF are over the age of 18. New medicines and an increased understanding of CF have led us to this hopeful place. Dr. Beall worked nearly his entire career to bring us here.


Dr. Beall's venture philanthropy model led to the breakthrough drugs Kalydeco and Orkambi, for example, which have been completely life-changing for some people with CF.

My son, Brady, has been taking Kalydeco for almost four years, and it is impossible to describe all the positive ways that it has impacted his life. It seems to have halted the progression of his lung disease before any permanent damage could be detected by CT scans. Today, Brady no longer requires the intense maintenance and breathing treatment schedule he needed before. His serious sinus issues completely disappeared when he started taking the drug. He regained his sense of smell, which had been completely lost for years. His digestion improved dramatically -- no more tummy aches -- and he grows bigger and healthier day by day.

This is the moment we received Kalydeco for the very first time. We had driven home from vacation in Arizona -- 24 hours straight -- to receive it!

This is the moment we received Kalydeco for the very first time. We had driven home from vacation in Arizona -- 24 hours straight -- to receive it!

One thing that I didn't expect was the huge impact this therapy has had on my life and my entire family.

It is really difficult to realize the weight of the burden that CF places on your shoulders until that burden has finally been lifted and you are free to experience a new feeling of lightness.

Every single day I wake up feeling so incredibly thankful that Brady has Kalydeco and can breathe easily. And, not a day goes by that I don't give thanks for Dr. Beall and his dedication to helping families like mine. He is my hero.

There is no doubt that through the years, many remarkable individuals have played a part in bringing us to where we are today with CF treatments. But in my opinion, no one has had a greater positive impact on the lives of those living with CF than Dr. Bob Beall.

He took the risk of leading us in a completely new direction, and it has paid off big time for my family and many others. I am forever thankful and deeply appreciative that he gave so much of his time, energy and brilliance to not only me, but the whole CF community.

While I am very sad that Bob is stepping down, I know that he leaves the Foundation in the very capable hands of Dr. Campbell, who has tirelessly advocated for the community alongside Dr. Beall for the last 17 years. I also know that the best way to honor Dr. Beall's work is to forge ahead at full speed until we finally realize the goal he has always visualized -- a cure for CF.

I have been agonizing over what to get for Bob as a retirement gift. I wanted to show him how deeply I appreciate his career's work, and the wonderful Foundation that he has helped build. Finally, I decided to get this tattoo. For me, it represents everything that the Foundation stands for, and I will think of Dr. Beall every time I lay eyes on it.

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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CFTR Modulators | About the CF Foundation

Rebecca currently serves as National Advocacy Co-chair Emeritus for the CF Foundation. Locally, Rebecca is the volunteer chair of the Great Strides walk in Spokane, Wash., and serves on the Parent/Family Advisory Board for the CF clinic at Sacred Heart Hospital in Spokane. She currently lives in Coeur d'Alene, Idaho, with her son Brady, who has CF, and her husband Brock. Follow Rebecca on Possibilities@Luckycfmom on Instagram; and @luckycfmom on Twitter.

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