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!

New health bill replaces hope with fear in cystic fibrosis patients

http://thehill.com/blogs/pundits-blog/healthcare/340084-new-health-bill-replaces-hope-with-fear-in-cystic-fibrosis

Letter from Preston W. Campbell, III, M.D.

As the Senate considers its proposal for healthcare reform, I urge lawmakers not to forget the millions of people who will rely on this legislation for lifesaving medicines and care. There is much more at stake with the Better Continue reading New health bill replaces hope with fear in cystic fibrosis patients

Subject: CF MiniCon: Transplant – May 21 Virtual Event for Adults With CF

This year the Cystic Fibrosis Foundation will be supporting three virtual events created by and for adults with CF to connect and share their experiences. In 2016, a group of adults with CF created BreatheCon, a two-day event that had a powerful effect in connecting community members. This year, in addition to BreatheCon, we are also introducing two CF MiniCons, which are one-day, topic-specific virtual events.

While last year’s BreatheCon was a pilot program, with 188 attendees and limited mostly to word of mouth promotion, this year we encourage you to spread the word about these virtual events to all adults with CF. Please note these events are open only to adults with CF (not to Care Center staff).

CF MiniCon: Transplant – May 21

On Sunday, May 21 from 6:00 – 9:30 p.m. Eastern Time, members of the CF community will be hosting CF MiniCon: Transplant, where adults with CF can have an honest and open dialogue about the transplant process.

This virtual event will include presentations, group chats, and small group video breakouts on a variety of aspects of transplantation that are unique to people living with CF. Discussion will focus on lifestyle, not on medical topics.

All adults with CF age 18 and over are welcome to attend CF MiniCon: Transplant. Registration is open now through May 18 at www.cff.org/minicon. For questions or more information, email  breathecon@cff.org.

Additional 2017 Events
Please be on the lookout for additional details on CF MiniCon: Young Adult Transition (July 22) and BreatheCon 2017 (September 8-9) in the weeks leading up to the events. If you would like to recommend someone from your community who has CF and is age 18 or over to help plan these events, or if you have any questions, please email Danielle Lowe Cipriani at dcipriani@cff.org.

We look forward to working with you to support virtual connections for people living with CF.

Thank you,
Drucy Borowitz, M.D.

Vice President of Community Partnerships

USACFA Scholarship Opens June 1st 2017-June30th for Fall 2017!

Please share with young adults who would be interested and qualified!

The United States Adult Cystic Fibrosis Association (USACFA) is excited to offer the Lauren Melissa Kelly Scholarship award for the Fall semester 2017. The scholarship will range from $1500 to $2500 and be awarded to adults with cystic fibrosis who are pursuing career certifications, associates, and bachelor’s degrees.

Continue reading USACFA Scholarship Opens June 1st 2017-June30th for Fall 2017!

New on CFF.org: Family Planning

NEW ON CFF.ORG: FAMILY PLANNING & PARENTING WITH CF
As people with cystic fibrosis are living longer, healthier lives, many are considering having families of their own.

To help people in the CF community make informed family planning decisions, Continue reading New on CFF.org: Family Planning

Maxing Out Your Strides – Mark A. Levine

By Mark Levine

Here we are again, on the precipice of another Great Strides Walk season. Not sure about you but I have already sent out my second email, a gentle reminder, to my entire list to increase the size of my team and boost my donations. It’s an exciting time of the year and a great event to be a part of that fulfills a lot in my Continue reading Maxing Out Your Strides – Mark A. Levine

Tell Congress to Oppose the American Health Care Act

The House of Representatives will soon vote on legislation that would jeopardize access to affordable and adequate health care coverage for people with cystic fibrosis.

The bills would effectively eliminate Medicaid expansion and alter Medicaid’s funding structure in a way that would reduce access to care Continue reading Tell Congress to Oppose the American Health Care Act

CFF announces recipients of first annual impact grants

Cystic Fibrosis Foundation Announces Recipients of First Annual Impact Grants to Programs That Serve People With CF and Their Families

The Cystic Fibrosis Foundation has announced the recipients of its first annual Impact Grants.

The program provides funding to support people with cystic fibrosis who are creating unique projects in their communities that serve people with the disease and their families. Cystic fibrosis is a rare, genetic disease that causes chronic lung infections and premature death.

The 2016 grants award $10,000 each to seven diverse programs across the country — from one that teaches singing as an outlet for creativity and wellness, to others that provide personal fitness and health training to individuals with cystic fibrosis. Recipients were chosen by the CF Adult Advisory Council, an external panel comprised entirely of adults with the cystic fibrosis, in partnership with the CF Foundation.

“People with CF have the greatest insights about how to live with this disease,” said Drucy Borowitz, M.D., vice president of community partnerships at the CF Foundation. “We are honored to support these organizations that harness the power of the CF community to help people with this disease and their families live better lives every day.”

Read the blog here.

The grant award recipients include:
The Cystic Fibrosis Lifestyle Foundation (CFLF), a nonprofit organization that helps people with CF maintain a healthy lifestyle. The CFLF provides assistance to children and adults with CF who demonstrate a financial need and personal desire to improve their physical wellbeing.

The United States Adult CF Association (USACFA), a nonprofit corporation run by adults with CF, offers the community an opportunity to exchange medical and nonmedical information through its quarterly national newsletter, CF Roundtable.

Project CF Spouse is a nonprofit organization dedicated to supporting spouses of people with CF. The grant will be used to grow the 150-person group, expand educational resources and facilitate connections between other spouses as they navigate their own CF journeys.

The sINgSPIRE program, through Breathe Bravely, will provide free, private voice lessons with a qualified voice instructor who will work on strengthening participants’ respiratory systems and improving self-awareness and confidence.

Program NuYou, part of Attain Health, is an online health coaching and personal training program for individuals with CF. Each participant receives time with an integrative health coach and personal trainer, and the program includes weekly check-ins, video conferences and a workout plan that is tailored to individual participant’s needs.

Miles for Cystic Fibrosis supports Project BreatheStrong, which provides grants for children and adults with CF to take part in activities that will improve their mental and physical heath.

Continuing Education for Caregiver/Individuals with CF supports individuals affected by CF through educational workshops that concentrate on various aspects of the disease.

Continue reading CFF announces recipients of first annual impact grants

Corbus Pharma Completes Phase 2 CF Study

http://www.streetinsider.com/

Corbus Pharma (CRBP) Completes Phase 2 CF Study of JBT-101; Expects to Report Results in Q1

Corbus Pharmaceuticals Holdings, Inc. (NASDAQ: CRBP) completed its Phase 2 study evaluating JBT-101 (“Resunab”) for the treatment of cystic fibrosis. JBT-101, the Company’s novel synthetic oral endocannabinoid-mimetic drug, is designed Continue reading Corbus Pharma Completes Phase 2 CF Study

The ‘Life Expectancy’ Statistic — By Gunnar Esiason

I Want Us to Stop Using the ‘Life Expectancy’ Statistic

Cystic fibrosis life expectancy gets tossed around like any number of statistics in the medical world. It’s something that people love to talk about, or use to show success and progress. Continue reading The ‘Life Expectancy’ Statistic — By Gunnar Esiason