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

(Step)Parenting with CF

By Amy Braid

When I was younger I always dreamed of having a family.  Dinner would be on the table every night even though I worked full time.  My husband would help the kids with homework and projects after working all day too.  We would be the “perfect” American family.  Just like all those 50s and 60s TV shows that we loved and grew up with.

Then I grew up…My family didn’t form the way I envisioned it would.  I married a man with two kids.  I inherited them and all that comes with them – minus bio-mom drama.  I was thrown into the mix when they were 7 and 13.  Now they are 14 and 20.  The 20 year old has never lived with us full time, only weekends.  The 14 year old lives with us full time and calls me mom.  Long story and nothing I can share here, sorry folks.  Anyway, being the parent of a teen is rough, being the parent of a teen who is not yours is rough, maybe even more so?  I struggle every day with decisions.  Are these the right ones to make?  Am I only making this choice because I didn’t give birth to her? Would these little things not bother me if she was my blood?  Will I ever feel like she is “mine?”

Like I said, the stress of dealing with a teen is massive, but stress is horrible on the body.  And then there is the whole getting into a groove and wham hospital time!  Two weeks to screw up your well-oiled almost functioning great machine of a household.  It really does complicate things!  You have a great schedule down, things are running smooth.  Projects are getting done, homework is completed, and grades are decent.  Then the cold hits, probably brought home from school.  It travels to your chest and the next thing you know it is time for some IV antibiotics and a two week stay in your local club med.  Sure you get waited on hand and foot, and there is no laundry or dishes to be done.  You can watch TV all day and not feel like you should be doing chores.  It is almost like a mini vacation. Almost.

Every day you are still checking on homework via texts.  Asking if there are projects that need to be done.  Or coordinating extracurricular activities.  Or making sure that going out with friends on the weekends doesn’t mean that no homework and studying gets done.  Making sure chores are still being completed and allowances are still being paid.  Because though your husband is capable of doing all this, he isn’t used to it.  You are the “homework hounder” and without you things tend to get forgotten.

So that little mini vacation is no more.  You are now worrying about what you are missing at home and if things are going to be a mess when you get out.  That well-oiled machine is starting to stick and make noises.  And once you get back out and start oiling it again, it takes a few weeks if not longer to almost be back to normal.  Until the next time you need to go away.

Remembering self-care while caring for others

This title sounds much too obvious to blog about. But when a loved one is in need, it doesn’t usually matter, we make sacrifices to help them. And sometimes, can forget about our own needs in the process. This can be true for taking care of our children, pets and/or parents.

It is not even the caring for someone else and not doing our own treatments but the stress and worry Continue reading Remembering self-care while caring for others

CF Podcast 145: Being a Father with CF

Meet Tim Wotton, 44 years old, with CF.  Tim is from London, U.K.  He was an international junior field hockey player, works full time as a business consultant, and continues to play hockey and visit the gym regularly. http://jerrycahill.com/cf-podcast-145-being-a-father-with-cf Continue reading CF Podcast 145: Being a Father with CF

A Sibling’s Transplant–Guest Blog by Lisa Cissell

Recently, I had the experience of being on the other side of the transplant waiting process. Having had my own double lung transplant 3 ½ years ago, I was well aware of the stress and anxiety that the patient faces. However, with my younger sister Cara’s transplant on Continue reading A Sibling’s Transplant–Guest Blog by Lisa Cissell

Helping Sick Parents – Part II: Guest Blog by Jeanie Hanley

I couldn’t do it. I kept feeling that I needed to physically be at the hospital to meet with the social services, rehab specialists (PT/OT) and doctor for my mother who has advanced dementia that declined after an arthritic knee caused her to fall and to lose the Continue reading Helping Sick Parents – Part II: Guest Blog by Jeanie Hanley

Helping Sick Parents – Part I: Guest Blog by Jeanie Hanley

Taking care of ourselves requires routines and adaptability. When the day doesn’t go as planned, we need to readjust and carry on. Getting our treatments, meds, meals, exercise and rest is paramount. Recently though, I’ve been tested on all these arenas. Continue reading Helping Sick Parents – Part I: Guest Blog by Jeanie Hanley

2013 CFRI Retreat Review

CFRI Retreat – 2013 Version

            The 2013 version(Party of a Lifetime) of CFRI Retreat was another amazing success! With Jessica Martens and her committee leading the way, the retreat was full of fun, education, exercise, laughter, and tears. CF participants aged in range from 17-56, with two people in their 50s and several now in their 40s and late 30s. YES, we are getting older and wiser! Continue reading 2013 CFRI Retreat Review

Remembering self-care while caring for others

This title sounds much too obvious to blog about. But when a loved one is in need, it doesn’t usually matter, we make sacrifices to help them. And sometimes, can forget about our own needs in the process. Continue reading Remembering self-care while caring for others