Stream “Up for Air” Documentary this Month for Free!

Jerry Cahill‘s documentary, “Up for Air”, provides viewers with an inside look at his personal fight for survival while living with #CF. During national #DonateLifeMonth (4/1 – 4/30) use the code: BEANORGANDONOR to watch the documentary for FREE! Tap the link to watch: https://vimeo.com/137872395

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FDA approves Proteostasis’s triple combination program for CF

Singapore — Proteostasis Therapeutics, a clinical stage biopharmaceutical company dedicated to the discovery and development of ground-breaking therapies to treat cystic fibrosis (CF) and other diseases caused by dysfunctional protein processing, announced that the U.S. Food and Drug Administration (FDA) has granted Fast Track Designation for the Company’s triple combination program for the treatment of cystic fibrosis. The Company’s proprietary triple combination includes a novel cystic fibrosis transmembrane conductance regulator (CFTR) amplifier, third generation corrector and potentiator, known as PTI-428, PTI-801 and PTI-808, respectively. The Company announced in January that the protocol for its triple combination clinical study, which the Company plans to initiate in the current quarter, has received endorsement and a high strategic fit score from the Therapeutics Development Network (TDN) and the Clinical Trial Network (CTN), the drug development arms of the Cystic Fibrosis Foundation (CFF) and the European CF Society (ECFS), respectively.

“Fast Track designation represents another positive step for the development of our triple combination therapy and underscores the serious unmet need that remains for the vast majority of CF patients,” said Meenu Chhabra, president and chief executive officer of Proteostasis Therapeutics.

The FDA’s Fast Track program is designed to facilitate the development and expedite the review of new drugs that are intended to treat serious or life-threatening conditions and that demonstrate the potential to address unmet medical needs. An investigational drug that receives Fast Track program designation is eligible for more frequent communications between the FDA and the company relating to the development plan and clinical trial design and may be eligible for priority review if certain criteria are met.

To read original article click here.

Jerry Unplugged: Bouncin’ Back

Well, here I sit, staring at four walls, unable to ride my bike, work out, coach, or run. I’m stuck here in my apartment for the next two weeks as I recover from a partial knee replacement. This lifestyle is not me at all. I’m frustrated, and it would be easy to get discouraged, but I can’t afford to.
I’ve just listed some of the many things I can’t do, but I’m focusing on what I can and must do in order to live the way I want to live. I must stay focused on the positive and on my recovery. It’s the only way to bounce back to my version of normal.

Continue reading Jerry Unplugged: Bouncin’ Back

AbbVie is Now Accepting CF Scholarship Applications from Students with Cystic Fibrosis for 2018-2019 Academic School Year

— Scholarship awards $3,000 to 40 exceptional students with cystic fibrosis (CF) for academic excellence, creativity and community service
— Top 40 students compete for public votes to receive one of two Thriving Student Scholarships for a total of $25,000 each
— Nearly $3 million in scholarships awarded to CF students to date through the CF Scholarship program

NORTH CHICAGO, Ill., March 28, 2018 /PRNewswire/ — AbbVie, a global research and development-based biopharmaceutical company, today announced that the 2018 AbbVie CF Scholarship program is now accepting applications for the 2018-2019 academic school year. Undergraduate and graduate students are invited to apply for the scholarship now until May 9, 2018 at 10:00 a.m. U.S. Central time by visiting www.AbbVieCFScholarship.com. Students can apply online or by downloading an application on the scholarship website.

As a part of its tradition of celebrating students with cystic fibrosis (CF), AbbVie will award $3,000 scholarships to 40 exceptional students with CF who demonstrate academic excellence, creativity and community involvement based on established criteria outlined in AbbVie’s application. Each of the 40 selected scholarship recipients will also be given the opportunity to compete for a total of $25,000 for use toward education-related expenses through one of two AbbVie CF Scholarship award categories: Thriving Undergraduate Student and Thriving Graduate Student.

“Learning that I was the recipient of an AbbVie CF Scholarship was one of the most exciting moments of my life. Growing up with CF, I was surrounded by an incredible team of doctors, clinicians, and nurses that worked to make sure that I was getting the best care possible,” said Briana Hansen, 2017 Thriving Undergraduate Student. “Now, with the help of the AbbVie CF Scholarship, I’m pursuing a career as a physician assistant, so I can do my part to give back and help other patients in need.”

AbbVie will announce the 2018 Thriving Undergraduate and Thriving Graduate Scholarship recipients in the fall of 2018. The Thriving Undergraduate and Graduate Student Scholarships are granted based on a combination of exceptional academics, achievements, and creative presentations. These awards are also determined, in part, by public votes cast over a two-week voting period to be announced in the fall.

“It’s amazing to witness the accomplishments that students with CF have achieved over the years. Together with the advances in modern medicine, these students are making incredible strides in their own lives, in their schools and in shaping a world in which living with cystic fibrosis doesn’t mean you can’t achieve your goals,” said John Duffey, vice president, U.S. Specialty, AbbVie. “AbbVie is proud to be part of such a strong community, and to continue in its support of these incredible students.”

The AbbVie CF Scholarship is part of AbbVie’s ongoing commitment to the CF community, which is comprised of more than 30,000 people in the United States. Today, more than half of the CF population is age 18 or older.1 For more information about the scholarship, please visit www.AbbVieCFScholarship.com.

About the AbbVie CF Scholarship
The AbbVie CF Scholarship was established 26 years ago in recognition of the financial burdens many families touched by CF face and to acknowledge the achievements of students with CF. Since its inception, the scholarship program has awarded nearly $3 million in scholarships to over 1,000 students. The AbbVie CF Scholarship is part of AbbVie’s ongoing commitment to the CF community, which is comprised of more than 30,000 people in the United States. As of 2016, more than half of the CF population are 18 years or older.1 Click here to learn more about the AbbVie CF Scholarship and 2017 Thriving Undergraduate Student Briana Hansen.

It is not necessary for scholarship applicants to have taken, currently take, or intend to take in the future, any medicine or product marketed by AbbVie, and this is not a consideration in the selection criteria. More information about the AbbVie CF Scholarship criteria and application can be found at www.AbbVieCFScholarship.com.

About AbbVie
AbbVie is a global, research-driven biopharmaceutical company committed to developing innovative advanced therapies for some of the world’s most complex and critical conditions. The company’s mission is to use its expertise, dedicated people and unique approach to innovation to markedly improve treatments across four primary therapeutic areas: immunology, oncology, virology, and neuroscience.  In more than 75 countries, AbbVie employees are working every day to advance health solutions for people around the world. For more information about AbbVie, please visit us at www.abbvie.com. Follow @abbvie on Twitter, Facebook or stories.abbvie.com.

A Dutch Company on the Quest Against Cystic Fibrosis

An interview by:  Clara Rodríguez Fernández

Daniel de Boer founded ProQR in 2012 following a strong determination to improve the lives of people with cystic fibrosis. We started ProQR Therapeutics for a very personal reason,” he told me. “Eight years ago, my son was born, and diagnosed with cystic fibrosis. At that time, I was a serial entrepreneur in IT. I decided to make a career switch and start a company to develop drugs for cystic fibrosis, but then also for other genetic diseases.”

One would think that a person without a background in biotech might have it difficult to succeed, but de Boer is not the only to have so far successfully undertaken this endeavor. Over in France Karen Aiach built Lysogene to treat her daughter’s rare genetic disorder, while in the US the story of John Crawley and his company Amicus Therapeutics, founded to help his two children’s diagnosis, went so far as to inspire a movie. The determination and motivation of these parents seem to overdrive any challenges they might have faced because of their limited experience.

De Boer set out to create a business plan for his new company and found out that there was already quite a lot of activity, especially in approaches using small molecules or gene therapy.“We decided that we really wanted to add something new to the space, and take a completely novel approach.”

So he started looking for a new technology, and he found it. “Around that time, I met for the first time with some people in biotech, including the CEO at Alnylam, John Maraganore, and we talked about how they used RNA approaches for genetic diseases,” says de Boer.

Technologies targeting RNA are quite new compared to those that target DNA such as gene therapy. But RNA-based treatments have started to gain traction in the last few years. There are multiple ways that RNA can be used as a therapeutic, but its distinctive advantage over gene therapies and the likes is that it does not permanently change our genetic makeup, making it possible to reverse its effects.

Today, RNA technology is being tested in multiple rare diseases caused by genetic mutations, such as hemophilia, porphyria, or iron overload disorders. I thought, ‘if you can do that for all these other genetic diseases, why not for cystic fibrosis?’” says the Boer. “With that in mind, we started ProQR.”

For the rest of this article, please click here.

Thanks to The Boomer Esiason Foundation, CF Roundtable’s new Pearl Sustaining Partner

We would like to thank The Boomer Esiason Foundation for its continued support at the Pearl Sustaining Partner level. A special thank you goes out to BEF volunteer Jerry Cahill for helping make this grant possible. Because of this support, we can provide all of our CF Roundtable programs such as:

The Boomer Esiason Foundation helps support the CF community via its programs including:

  • Scholarships – BEF has numerous scholarship opportunities available
  • Lung Transplant Grant Program – covers transportation, housing and other expenses not covered by insurance that are related to transplant
  • You Cannot Fail – A motivation program that empowers people with CF
  • CF Podcasts – podcasts covering a wide variety of CF-related topics produced by Jerry Cahill
  • CF Wind Sprints – short videos by BEF Volunteer Jerry Cahill with tips for living with CF
  • Gunnar’s Blog – a personal blog of Gunnar Esiason, Boomer’s son, who has CF
  • Hospital Bags – goodie bags provided to CF patients of all ages during hospital stays
  • Team Boomer – encourages people with CF to be active by participating in events and helping to fundraise
  • Bike 2 Breathe – An annual 500-bike tour to raise awareness for the importance of exercise with CF
  • CF Century Rides – A personal goal of Jerry Cahill’s. Jerry is determined to do a century ride (100 miles bike ride) in all 50 states for CF!
  • CF: Live By Example – A pilot program where people with CF who are living, breathing, and succeeding will ensure parents of newly diagnosed children that CF is only a bump in the road, not a death sentence.
  • Club CF – an online forum where people with CF can share their stories

For more information on The Boomer Esiason Foundation please visit: https://www.esiason.org/

Exercise for Life Scholarship

When it comes to #CF, exercise saves lives — and now it can help you earn money towards your education. BEF’s Exercise For Life Scholarship will be awarding $10,000 scholarships!
All applicants are required to complete a daily run log from March 12th – June 1st and should be training for the 1.5-mile qualifying run. Candidates will be judged on the basis of time. Get ready to put those miles to use!
Deadline: June 1, 2018
Amount: $10,000
**IN ORDER TO QUALIFY, YOU MUST START YOUR TRAINING LOG ON MARCH 12TH**

Check out Jerry Cahill’s new blog: Jerry Unplugged!

Jerry recently launched Jerry Unplugged, a new blog segment on his website where he will share insights, experiences, and more!

Who Am I?

I’m Delta F508. I’m R117H. I’m a cystic fibrosis patient. I’m post double-lung transplant by 5 years and 10 months.
I am all that and so much more. I am Jerry Cahill: athlete, coach, and friend. I have an unrivaled joie de vivre. I am positive, relentless, kind and generous. I am a man, who just happens to have cystic fibrosis. I don’t accept mediocrity. I never give up and always believe You Cannot Fail.
I was born one of six kids and, although I had CF, my parents treated me just like the others. After I was diagnosed, my mother wanted to shelter me, but my dad said, “If his life is going to be shorter, I want him to spend it with his brothers, having fun and being normal.” My dad believed that “you cannot fail as long as you try,” and I made it my life’s mantra.
I attended college and went to nationals in pole vaulting. It isn’t that I didn’t have issues because of CF, it’s just that I chose not to let them get in the way and be roadblocks. They were just detours on the way to my dreams. I went on to have a successful career while juggling the demands of CF. I never have and never will let the disease define me. The more it progressed, the more I pushed back.
Finally, nearly six years ago, at age 56, I needed a lung transplant and received one thanks to the unconditional love and generosity of a grieving family. I am grateful to my donor every day.  Continue reading…

Why I Do What I Do?

Because I can…
I believe in giving back & passing it on. I’ve been given a platform, so I use it to share what I’ve learned and experienced to benefit others. I really like the quote from the movie, The History Boys: “Pass the parcel. That’s sometimes all you can do. Take it, feel it, and pass it on. Not for me, not for you, but for someone, somewhere, one day.” I don’t do all this for myself; I do it to give hope to others, to inspire them to do more, fight harder, and be the best they can be. Everyone has limitations, but I want to inspire every person to go out and be the “hero of your own story.” Continue reading…

Doctor, Doctor!

I walked into the office the other day while Boomer was there and we began to make small talk. He asked how I was doing and I told him I had to see the doctor for my knee, because I’m having knee-replacement surgery in March. Boomer started to laugh and asked, “Just how many doctors do you have? You’re always seeing some doctor, and you act like it’s no big deal. You know, not everybody sees as many doctors as you do.”
“Boomer, I have CF! I’ve had a transplant. I have doctors but not that many, really,” I replied. Continue reading…

6 ways to get back into shape after a CF-setback

For people with cystic fibrosis, getting “back” into shape is a common occurrence. Because of the nature of the disease, patients often experience setbacks in both their health and fitness routines. But, exercise is an important and essential part of remaining compliant with treatments and medications in order to live a longer, healthier life with CF.

Continue reading 6 ways to get back into shape after a CF-setback

PMD Healthcare Announces Two New Patient Advisory Boards

PMD Healthcare, a medical device, digital health and chronic care management services company, has announced it is forming two new patient advisory boards: one for Cystic Fibrosis (CF) patients and caregivers of CF Children, and one for Pulmonary Fibrosis (PF) patients and PF caregivers.

Continue reading PMD Healthcare Announces Two New Patient Advisory Boards