Category Archives: CF News

by

CF Awareness Month

Alright already! I think I let my Nina Storey Collaboration post simmer long enough. Granted, if I wrote another post, it’s not like my friends and followers couldn’t find it, but it looked good as the first thing seen on my blog. 🙂

Anyways! Let’s get down to business shall we?…

The month of May has been deemed CF Awareness Month! And during an awareness month, you try and spread the word about (in this case) cystic fibrosis and how it affects its patients. Sometimes those patients are someone close to you, or you know this one guy who’s “the distant cousin of my aunt’s nephew, twice removed” that has it. No matter your connection, it’s important to spread the word.

To make my contribution to the month of CF, I would like to share two links:

The first link I would like to share with you can directly affect me and I’m really hoping it doesn’t.

http://nu.salsalabs.com/o/50674/p/dia/action3/common/public/?action_KEY=7993

Recently the Social Security Administration proposed changes that would make it more difficult for CF patients to get disability benefits. Currently, I am benefiting from these benefits. For CF patients, health insurance is 100% necessary. Without health insurance, the medicine we need to stay healthy wouldn’t be affordable. This is crucial not only for me but others looking to gain these benefits in the future. Please follow the link and send the letter that has been written to senators to help prevent these changes.

The second link I would like to share with you links you to my personal CF Great Strides page.

https://www.cff.org/great_strides/mobile/donate/index.cfm?GSAppealCode=CODNGS1213&idUI=356265&idVolunteer=1941700&walkid=8687

I participate in the CF Great Strides event every year with my team, Trek for Tony in Summit County, Colorado. The last couple years, I have been able to raise over $3000. Every little bit helps and if you have a chance please follow this link to support me, my team, and CF patients everywhere. Ninety cents of every dollar donated goes directly to research so in the future CF can stand for “Cure Found.” If you don’t put a donation toward my team and someone else’s, that’s great! All the money goes to the same place. If you have no one to support close to you, however, support Trek for Tony!

A little late on CF awareness but I got around to it!

Spread the word about the Social Security Administration changes as well as the Great Strides page for donations! Do YOUR part to raise awareness about cystic fibrosis, even if all you do is share my blog to your friends…I’llcount that as well. 🙂

Until next time…

Keep Fighting, Keep Breathing, Say Tomorrow

keepbreathing65

by

Raising Funds and Awareness

Hey all!

It’s about that time again for me to start thinking about raising those funds for the CF Foundation in hopes that we can make CF stand for ‘Cure Found.’ I always participate in the Great Strides event that is held in Summit County and for the past couple of years, I have held a fundraising party the night before the walk to raise those last minute funds before sending them off to the CF Foundation. In years past, I have raised over $1000 in that one night and my team, Trek for Tony, has contributed over $3000 each year. Pretty solid stuff considering another form of Kalydeco has moved into Phase 3 trials this year.

Follow my new link I have up on the sidebar to donate to my team so we can come one step closer in finding a cure!

Check out this short article about other ways people are getting involved with raising, in this case, a sufficient amount of funds.

http://www.cff.org/aboutCFFoundation/NewsEvents/4-10-Bid-for-Cure-Nets-271K-at-Master-Chefs-Event.cfm

ANYTHING and EVERYTHING helps! No donation is too small!

Keep Fighting, Keep Breathing, Say Tomorrow

keepbreathing365

P.S. If you are in the Colorado or Denver area, stop by the Soiled Dove on April 19th to follow up with Nina Storey and I as we play some tunes to help raise awareness for CF. If you have friends and family in the Colorado or Denver area, spread the word to them!

by

Back to School with CF

http://www.cff.org/LivingWithCF/AtSchool/

Great article on the Cystic Fibrosis Foundation website about those with CF going back to school this fall. Check it out and send it out to others. Great resources to teach teachers and their schools about the complications of CF.

Have a good school year to all those still in school. I’m one of the lucky ones that have graduated from college and have the luxury of making a living instead 😛

Keep Fighting, Keep Breathing, Say Tomorrow

keepbreathing65