Cystic Fibrosis Podcast 192 Emily’s Entourage

In the latest Cystic Fibrosis Podcast, Jerry speaks with Emily Kramer-Golinkoff about the role of a patient advocate organization in driving drug development in rare disease.
Emily, a 33-year-old who has a nonsense mutation of CF, is a co-founder of Emily’s Entourage, a 501 3(c) that’s goal is to accelerate research for new treatments and a cure for CF. She is an internationally recognized patient advocate and speaker, has a Master’s degree in Bioethics and is certified in Clinical Ethics Mediation, was named “Champion of Change” by President Obama’s Precision Medicine Initiative, and has been featured by CNN.com, Time.com, AOL.com, People.com, and more for her work with her charity.

Continue reading Cystic Fibrosis Podcast 192 Emily’s Entourage

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.

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/

Sexual and Reproductive Health Resources

Looking for practical, up to date information about sexual and reproductive health for women and girls with CF?

Guides from puberty to incontinence to urinary tract infections to contraception and pregnancy address in detail many areas of sexual health and CF. To help you start the conversation,  share them with your CF team, pediatrician or gynecologist. Continue reading Sexual and Reproductive Health Resources

List of CF Patient Assistance Programs

Patient Assistance Programs

AbbVie 
CREON® CFCareForward Patient Support Program offers nutritional services to eligible patients, as well as financial and educational support for patients and families.
http://www.creon.com/CFCareForward
1-855-227-3493

Chiesi USA 
Chiesi USA offers prescription access support, financial assitance, and product counseling for patients taking BETHKIS® (Tobramycin Inhalation Solution) and PERTZYE® (pancrelipase) 
ttp://bethkis.com/support-services/
http://www.pertzyecf.com/patient/free-support-and-savings/r
1-888-865-1222

Genentech, Inc.
Genentech Access Solutions 
http://www.genentechaccesssolutions.com/portal/site/AS/
1-866-4-ACCESS
Pulmozyme® Access Solutions Co-Pay Card Program 
https://www.activatethecard.com/pulmozyme/welcome.html
1-877-794-8723

Gilead
Cayston® Access Program
http://www.gilead.com/responsibility/us-patient-access/cayston%20access%20program
1-877-722-9786

Novartis Pharmaceuticals
Patient Assistance Now (Spanish Speaking Services) 
http://www.pharma.us.novartis.com/info/patient-assistance/patient-assistance.jsp?usertrack.filter_applied=true&NovaId=2935377019348182802
1-800-245-5356

Vertex Pharmaceuticals
Vertex GPS: Guidance & Patient Support (Kalydeco® or ORKAMBI™)
http://www.vertexgps.com/
1-877-752-5933

RespirTech
Customer financial assistance program for patients using inCourage® airway clearance therapy.
http://www.respirtech.com/reimbursement-incourage-airway-clearance-therapy/patient-financial-resources
1-800-793-1261

Live 2 Thrive 
Live 2 Thrive Offers copay assistance, free vitamins and supplements, and nutritional information for eligible patients. 
https://www.live2thrive.org/
1-888-936-7371

OTHER RESOURCES

Foundation Care 
List of company assistance programs 
http://www.foundcare.com/fc-patients/reimbursement-help/

Cystic Fibrosis Patient Assistance Foundation
Assistance for affording medications and devices for managing CF
https://www.pparx.org/prescription_assistance_programs/cystic_fibrosis_patient_assistance_foundation

Cystic Fibrosis Services
Additional patient assistance programs for those without insurance coverage 
http://www.walgreens.com/topic/pharmacy/cystic-fibrosis-services.jsp

Boomer Esiason Foundation
Links to assistance programs for Tobradex, Creon, Aceon, Estratest HS, Prometrium, EstroGel, Pulmozyme, Advair, and Cipro
http://www.esiason.org/what-is-cf/resources/patient-assitance

HospitalBillHelp.org 
Guidance for Californians facing hefty hospital bills 
http://www.hospitalbillhelp.org

NeedyMeds.org 
Additional Patient Assistance Programs
http://www.needymeds.org

Partnership for Prescription Assistance
Database of Patient Assistance Programs
(Search by drug, company or program name) 

http://www.pparx.org/prescription_assistance_programs/list_of_participating_programs

Patient Advocate Foundation
Mediation and arbitration services for patients with debilitating and life-threatening illnesses.
http://www.patientadvocate.org/

USACFA Annouced by CF Foundation as a Recipient of 2017 Impact Grant

The Cystic Fibrosis Foundation has announced the recipients of its second annual Impact Grants. The Impact Grants Program provides funding to unique projects by and for people with cystic fibrosis (CF) and their family members. CF is a rare, genetic disease that progressively limits the ability to breathe and ultimately causes premature death.

Continue reading USACFA Annouced by CF Foundation as a Recipient of 2017 Impact Grant

Upcoming deadline for USACFA Scholarship!

We are extending the Spring 2018 deadline until November 15, 2017!

The United States Adult Cystic Fibrosis Association (“USACFA”) offers the Lauren Melissa Kelly Scholarship award each semester, in honor of Lauren Melissa Kelly. The scholarships of up to $2500 are awarded to adults with cystic fibrosis who are pursuing career certifications, associates, and bachelor and graduate degrees.

Please find scholarship criteria and requirements on our website and direct any questions to scholarships@usacfa.org.

http://www.cfroundtable.com/announcements/united-states-adult-cystic-fibrosis-association-scholarship/

A fall 2017 scholarship recipient, Elizabeth Shea, has shared with us how her college experience has been shaped by having CF and all that she has been able to accomplish through the help of our scholarship and her dedication to hard work and passion in performing music.  In her own words:

As a winner of the USACFA scholarship for the fall semester of 2017, I am fortunate to have the opportunity to share some of my experiences as a college student with CF.  I thought it might be helpful to kids who are applying to colleges now, or those who are in college deciding on a major, to hear a little about what I’ve done and why.

First I should say I am now a junior at Stetson University.  I play flute and I am a double major: music education and music performance.  I added the second major at the end of my sophomore year.  I also joined the music sorority Sigma Alpha Iota in my sophomore year.  Both decisions have had a big impact on my life at college.

Music education was my original major, and believe me, it kept me very busy.  Between classes, private lessons, multiple ensemble rehearsals, mandatory recital attendance, private practice, classroom observations and studying, sometimes I hardly have time for lunch.  But, I knew that if I added a performance major, my playing ability would be seen as more competitive down the road when I’m applying to graduate school, or even in competing for a teaching job.  So, I went for it.

My decision to join a sorority was also significant.  Not only am I a member, I am now the treasurer of our chapter.  With weekly chapter meetings, events, executive board meetings, financial reports, banking, etc. I’ve had to dedicate a decent amount of time to SAI.  But the payoff has been great.  The sorority gives me an awesome group of close friends who all share my love of music.  I’m able to socialize with them and not just spend time in classes, performing and studying with them.  I’m also getting some valuable experience being in a leadership role with responsibilities that are new to me.

So, as you can imagine, I’m really, really busy this year.  I’ve had to be very careful to keep up with my medical treatments so that I can stay healthy.  Bottom line is, don’t assume that because of CF you have to limit yourself or skip things.  I might have to work a little harder to keep up with everything that I’ve added this year, but I am enjoying all the new challenges.  Of course, this year is also harder because I’m a junior performance major and so I am expected to perform at a higher level.  No pressure, right?  But I think I’m up for it.  Just try things and see what you can do.  You can always cut back if you end up overwhelmed, but if you don’t try, you will never know if you could have done it!

 

CF Relief Fund Launched for Those with CF Impacted by Hurricanes.

Isabella Passamano, daughter of Beth Sufian and James Passamano, has launched the CF Relief Fund to provide direct relief to children and adults with CF affected by Hurricanes Harvey and Irma. Continue reading CF Relief Fund Launched for Those with CF Impacted by Hurricanes.

AbbVie Announces 25th Annual Cystic Fibrosis Scholarship Program Including 2017 Thriving Student Scholarship Contest and Blogger’s Choice Award

• In honor of the program’s 25th anniversary, AbbVie is awarding three $25,000 scholarships, including a new award category – the Blogger’s Choice Award
• Cast a vote online or via text message, through October 13, 2017, to help determine this year’s Thriving Undergraduate and Continue reading AbbVie Announces 25th Annual Cystic Fibrosis Scholarship Program Including 2017 Thriving Student Scholarship Contest and Blogger’s Choice Award

Sign up for BreatheCON Sept 8th and 9th!

By Jeanie Hanley MD, President of USACFA and
John Mercer, BreatheCon 2017 Co-Chair

Sign up today for this FREE virtual event for adults with cystic fibrosis.

Our USACFA director, Mark Levine, is a featured Keynote Speaker on Friday and our CF Roundtable columnists, Aimee Continue reading Sign up for BreatheCON Sept 8th and 9th!