When Cystic Fibrosis is Out of Our Control

There are those people that go with the flow and don’t stress as much about life events, but I would say a majority of people want to have control over how life pans out. I’m certainly the kind of person that needs to know how things will happen, I need to have a plan, and I worry about how my life will fall into place. Basically, I have a need to be in control. I have, for the most part, always maintained control over my disease, which is the most uncontrollable factor in my life. Continue reading When Cystic Fibrosis is Out of Our Control

OWN IT: Did Science Find an Answer to the Lack of Organ Donors?

As it turns out the future is now. From National Geographic:

In a remarkable—if likely controversial—feat, scientists announced today that they have created the first successful human-animal hybrids. The project proves that human cells can be introduced into a Continue reading OWN IT: Did Science Find an Answer to the Lack of Organ Donors?

Perseverance, Resiliency and Erin Andrews

This morning I came across a story on MMQB about unbelievable year Erin Andrews is having.

As many may know, Erin Andrews, NFL on Fox’s lead sideline reporter, had been dealing with a crazed stalker in court. I cannot even imagine the stress that must Continue reading Perseverance, Resiliency and Erin Andrews

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

Up For Air is Available for Rent/Purchase

Up For Air, The Inspirational Award-winning Documentary Available for Rent/Purchase

We are excited to announce that the award-winning Up For Air documentary featuring BEF ambassador and 60-year-old pole-vaulting coach living with CF, Jerry Cahill, is now available to rent and purchase on Vimeo. Watch the full movie here:
https://vimeo.com/ondemand/upforair.

About Up For Air
The film, directed and produced by Artem Agafonov, was shot over a period of five years, highlighting the “lead by example” and “you cannot fail” attitude of Jerry Cahill as he overcomes the daily challenges of living with CF. Viewers will understand the importance of Jerry’s role as a coach and mentor to pole-vaulting athletes, as well as the sobering reality of Jerry’s daily medical regimen.

The documentary follows the steady decline of Jerry’s lung function, framing his body as a defective machine and pegging time as his ultimate antagonist. When Jerry’s lung capacity decreases to 19 percent, a double lung transplant becomes imminent.

Up For Air gives viewers a glimpse into Jerry’s journey as he transforms and vaults over the many obstacles of this next chapter of his life.

Learn more about Up For Air here.

Making it Matter Ep. 15

Making it Matter Ep. 15 – Dating with Cystic Fibrosis

Julia and I received an email from a mom whose daughter has CF. She asked how might cystic fibrosis impact her daughter’s dating life as she gets older. Continue reading Making it Matter Ep. 15

5 things I learned from BreatheCon

BreatheCon, held this past weekend, was an online conference for CF patients from around the country to come together to be able to share life experiences, ideas, and give inspiration to each other in battling this disease.
I attended, and it was an incredible experience. Hearing from keynote speakers who have faced such adversity and have come out of it stronger and more motivated than before, was so uplifting to hear. I believe it created a lot of hope and courage for those that still have our toughest challenges to face.

I want to share the top 5 things that I now understand better about life with Cystic Fibrosis: Continue reading 5 things I learned from BreatheCon

6 Tips for Standing Back Up

6 Tips for Standing Back Up After Being Knocked Down — Guest Blog By Emily Kramer-Golinkoff

Originally posted on Emily’s Entourage, on July 27, 2015
http://www.emilysentourage.org/6-tips-for-standing-back-up-after-being-knocked-down/

The other week, I got some disappointing news at the doctor’s. I have to be honest, it caught me off guard and knocked me down. It also got me thinking about life, the punches it can throw, and how to get back up with strength, conviction and authenticity.Here are 6 tips for standing back up after being knocked down:

Continue reading 6 Tips for Standing Back Up

Jerry Cahill, Boomer Esiason Foundation Ambassador, Celebrates 60th Birthday and Demonstrates that People with Cystic Fibrosis Can Live a Normal Life with Exercise and Medical Compliance

As part of his 60th year, Jerry has Activated a “Living List,” and will Complete 60 Events this Year — This is 60:60

New York, June 27, 2016 – The Boomer Esiason Foundation (BEF) today celebrates the 60th birthday of Jerry Cahill, a BEF cystic fibrosis (CF) Ambassador and double lung transplant survivor, who proves that age is truly just a number and that success is possible with a strong commitment to your health. Within the last Continue reading Jerry Cahill, Boomer Esiason Foundation Ambassador, Celebrates 60th Birthday and Demonstrates that People with Cystic Fibrosis Can Live a Normal Life with Exercise and Medical Compliance

Boomer Esiason Foundation’s Cystic Fibrosis Ambassador, Jerry Cahill, to Ride in 3rd Annual Bike to Breathe Event

The West Coast Bike Ride Aims to Raise Awareness for Cystic Fibrosis
and Promote the Importance of Exercise

New York and San Francisco, September 19, 2016 – The Boomer Esiason Foundation (BEF) today announced that its cystic fibrosis (CF) ambassador, Jerry Cahill, and Emily Schaller, a CF patient who started cycling, running and Continue reading Boomer Esiason Foundation’s Cystic Fibrosis Ambassador, Jerry Cahill, to Ride in 3rd Annual Bike to Breathe Event