Help Emily Get on Ellen!

Click Emily to see a feature story out today about CF! This is awesome.

A Brighter Outlook for Cystic Fibrosis Patients

Photo by Jeffery Sauger of The New York Times

Make sure you check out the full story and then look around because there is a lot of great info about CF, new research, trials and an interview with my buddy Dr. Preston Campbell.

Rock CF,

Em

My great friends at the awesome site CFVoice.com have added new videos from the North American Cystic Fibrosis Conference to their Go To! series. Join Bonnie as she interviews doctors, nurses, social workers, patients and more..oh yeah and make sure you catch the video featuring Dr. Beall and Me! Also a very cool music video from Hellen’s performance. I LOVE CFVOICE.COM!

Click the button below to check it out:

Crain’s Detroit Business Magazine has chosen Emily as one of their 2009 “20 in their 20’s,” a salute to 20 creative area leaders in their 20’s.

To see Emily’s feature on the Crain’s site click her face below. Also if you’re in Detroit you can pick up the magazine from this week. Be sure to check out the other 19 honorees too, we’re all trying to make a difference in this world!

The Celebration for the 2009 Class of 20’s in their 20’s in May 7th at Steve’s Soul Food in Detroit. Register at www.regonline.com/20event. $25 gets you in to rub elbows with the business leaders of Detroit!

(Click the picture above to see my speech)

On Saturday night I was lucky enough to attend and speak at the Metro Detroit Chapter of the CF Foundation’s Tennis Auction Ball! It was an incredible event with a lot of very caring people who despite this economy reached into their pockets and bought some hope for cystic fibrosis. Last week I even barowed a polo shirt, put on my seersucker pants  and showed up to watch the tennis portion of the event.

We danced to the sounds of the band who made up Mitch Ryder and  the Detroit Wheels, ate a beautiful dinner and I even walked away with a canoe/kayak trip out west, a tennis racquet and tennis lessons! What a great night to help Rock Cystic Fibrosis so hard that it will one day stand for “Cure Found.”

Today our President, Barack Obama lifted a ban on stem cell research. Upon hearing this news I became very hopeful in our scientists and also the fight against many diseases, especially cystic fibrosis.

Also today the Rock CF Foundation became a featured Partner on the SickKids (A Community Supporting Stem Cell Breakthroughs) website. Please click below to read the story and find out what SickKids is all about! They’re doing great things and coupled with the constant efforts from the Cystic Fibrosis Foundation’s researchers I feel CF will be treated and controlled much better in the near future.

Click below to check this out:

http://sickkidsus.org/featured-partner/

At the North American Cystic Fibrosis Conference in Orlando this past October I shot this segment for the Cystic Fibrosis Foundation’s website and YouTube. We need YOU CF patients more than ever to participate in clinical trails! Click below and check it out:

(Above image borrowed from the CF Foundation)

Rock CF,

Em

Philanthropic “Venture Capital”

I hope everyone is having a great Holiday season!! I just finished baking my first from scratch cookies ever! My Christmas shopping is already done and I can tell this is going to be a great finish to a wonderful but eventful 2008. Emily and Rock CF got some great press this year. From the

Forbes Article

The Associated Press story that ran worldwide

SPIN magazine

the Rock CF Foundation is out there and is growing.

This year was a big year for me too. Two tune ups in one year was a little annoying and the gallbladder surgery was unexpected but these things didn’t stop me from training for and running my first half marathon in June or from riding my bike 282 miles from Detroit to Chicago  with three great friends and my brother Jason behind.

I still believe that coupled with my daily med routine exercise is the key to keeping me healthy and strong!

This year I was able to travel to the Novartis/TOBI Conference in January to play drums with some people from the TOBI and Xolair teams, speak and thank everyone on the TOBI team for giving me this wonderful med! There I met some lifelong friends while having a blast!

In October I was also flown to Orlando with my band for the North American Cystic Fibrosis Conference. We played at the first plenary session and I spoke right after. This was the absolute most amazing experience of my life. Meeting and getting to know everyone from the CF Foundation was incredible and also seeing and speaking with all of the people who work with CF everyday was just awesome. Thanks Dr. Beall and the CFF!

My goal is to run a full marathon in the Spring of 2009. Currently I am going to therapy for my knee and once that is healed I will be hitting the pavement very hard to train for the big 26.2 mile run. I am very excited and have great confidence that I can pull this one off.

2009 is going to be the best year for the Rock CF Foundation, I can tell. Hopefully our events will grow and gain even more support from the community. Even though times are tough we are still in this fight and will do whatever we can to help rock cystic fibrosis so hard that CF stands for Cure Found.

Above is Dr. Beall receiving a hug from me and right now I am sending you all a giant holiday hug!

Happy Holidays and as always Rock CF,

Emily

P.S. The new Rock CF Merchandise site will be up soon with a couple brand new items that will rock your socks off! A few more logistics to work out and we will be rockin.’

Patient Power

If you are told you have an incurable disease, you might be motivated to help find a cure.

Every crash and thump of Emily Schaller’s drumsticks is a medical victory. The 26-year-old rock ‘n’ roller suffers from cystic fibrosis, which fills her lungs with bacteria-infested mucus. If she had been born 30 years earlier, she probably would have died before she finished high school. Instead, she’s “playing my guts out,” she says, hammering out licks she learned from listening to Mötley Crüe and AC/DC. Her all-woman band, Hellen, has played at almost every club in Detroit since she and four friends taught themselves to play five years ago.

Schaller keeps up a grueling daily regimen. She runs 25 miles a week, spends hours doing physical therapy and swallows 40 pills a day. But she gives much of the credit for her active life not to her diligence but to a 53-year-old patient advocacy group, the Cystic Fibrosis Foundation. “They’re the reason I’m alive,” she says.

The CF Foundation was the first patient charity to do something radical: pay for drugs to be invented and tested in people. It funded the first clinical trials of an aerosolized antibiotic Schaller has been breathing in for a decade. It has been testing a saltwater mist that Schaller says is “the best thing ever” for clearing out her lungs. Last year she was in a study of a promising experimental drug the CF Foundation paid to invent. Approval of another CF Foundation-backed drug, from Gilead Sciences (nasdaq: GILD - news - people ), is expected any day. Over the past 20 years the CFF has put $188 million into research at drug companies, and it is currently involved in human studies of 33 drugs….

Follow the link to read the full article: http://www.forbes.com/forbes/2008/0915/070.html