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

Double lung transplant patient reflects on life 26 years after lifesaving surgery

http://www.wect.com/story/34508973/double-lung-transplant-patient-reflects-on-life-26-years-after-lifesaving-surgery

Howell Graham was the first Cystic Fibrosis patient at UNC to receive a double lung transplant that saved his life in 1990. Today, he looks back on what all he has been able to accomplish since the day of his Continue reading Double lung transplant patient reflects on life 26 years after lifesaving surgery

The Women’s March on Washington

I was there.  Yes, I went.  I participated in the largest protest in the country.  And it was AMAZING!

We like to avoid politics here at CFR so I will not voice any of the reasons I went.  What I do want to do is talk about my experience as a person with CF.

Continue reading The Women’s March on Washington

Run with Team Boomer in 2017

Run the 2017 TCS New York City Marathon with Team Boomer

NOVEMBER 5, 2017
STEP 1: REGISTER
To run for Team Boomer

STEP 2: INTERVIEW
with Team Boomer staffer Katie Continue reading Run with Team Boomer in 2017

Urgent call to action for future healthcare

From Sue Landgraf, Exectuive Director of CFRI

Urgent Call to Action! Congress is beginning to discuss proposals for future healthcare legislation. Proposals thus far do not include many of the protections that are contained within the Affordable Care Act (ACA), which would be catastrophic for many members of the cystic fibrosis Continue reading Urgent call to action for future healthcare

Five things I learned about volunteering—By Reid D’Amico

Five Things I learned When I Started Volunteering with CF Organizations

By Reid D’Amico

During my years in high school and undergrad, I spent much of my time in isolation from CF volunteering. Though I was diagnosed, I had little ability to come to grasps with my CF. I isolated myself from it, and even remember the chilling alertness that would come over me when I Continue reading Five things I learned about volunteering—By Reid D’Amico

Making it Matter Ep. 25 – Salty Cysters

Lea Faraone, from the Salty Cysters, joins the podcast today to talk about her life with cystic fibrosis. At 26, she works as an oncology nurse, and is an advocate for people with cystic fibrosis. She uses the @SaltyCysters social media platform to spread educational awareness Continue reading Making it Matter Ep. 25 – Salty Cysters

Boomer Esiason Foundtaion’s 2017 Big Sur International Marathon

Team Boomer is now taking applications for the 2017 Big Sur International Marathon to aid in the fight against cystic fibrosis!

Registration Link:
http://www.teamboomer.org/events/big-sur-international-marathon/  Continue reading Boomer Esiason Foundtaion’s 2017 Big Sur International Marathon

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