Very Important Information Regarding Hospital Care!

The government recently released its annual report on the quality of health care Americans receive and while there have been some improvements, the news was not positive: hospitals still have work to do to put an end to the ongoing, but very solvable, problem of patients acquiring life-threatening infections in hospitals.

To help achieve that, Kimblery-Clark Healthcare has put together a website called "Not on My Watch" at www.haiwatch.com to educate patients and health care professionals. Their goal is to eliminate these preventable illnesses and their often tragic consequences.

I thought that you and the readers of Reaching Out Online would care about this issue and I was hoping you could post some information spread the word about protecting patients from preventable hospital infections. I've created a useful site that you're welcome to check out and grab resources from:

http://haiwatchnews.com

Barbara Dunn
barbara@haiwatchnews.com
www.haiwatch.com

Miles for Cystic Fibrosis was a success!

Photos shown are Sue Stein & Susan Burroughs on the left and some of the very special "Rosebuds" on the right!


We are honored once again to include the CF-Reaching Out Foundation as a recipient of a grant earned by Team 65ROSES during the 2010 ING Georgia Marathon and Half Marathon. This year’s team was 194 runners strong! Our latest initiative was to include some up-and-coming youngsters on their own team, appropriately named The Rosebuds. Twenty-nine kids, ages 4-10, participated in the Kids Fun Run, and so far have raised over $10,000! Way to go kids! The team’s overall goal of $65,000 is within reach. Donations continue to pour in, with a deadline of April 15th.
In addition to our annual Atlanta grant, we are very pleased to announce that a new door has opened for CF-ROF to begin offering assistance to CF families in the Miami area. Proceeds totaling $9,580 from this year’s Team 65ROSES-Miami were presented on March 8. We hope this newly established relationship will bring the same quality of relief already enjoyed by many, many CF families in Atlanta.
By the Numbers
194 individuals participated on Team 65ROSES-Atlanta this year, either as runners or walkers – up from 164 in 2009
139 volunteers staffed the Hydration Station
911 donors from 42 states and 2 foreign countries have made contributions to our cause, raising $53,792 (as of 4/1/10).
An additional $4,267 was raised at our Pre-Race Dinner Silent Auction … which was successfully organized by volunteers from Reaching Out!  Job well done ladies! 
 
Questions about joining Team 65ROSES can be addressed directly to support65roses@gmail.com.  Or visit the website, www.MilesForCysticFibrosis.org.  
 

Important new inhaled antibiotic approved for CF!!!

We have a new antibiotic in the arsenal to help fight the life-threatening infections associated with cystic fibrosis.

The FDA approved an important new inhaled antibiotic called Cayston® (aztreonam for inhalation solution) for the treatment of CF. The drug was made possible by significant support from the Cystic Fibrosis Foundation, including an early $1 million investment to help develop the therapy.

Developed by Gilead Sciences, Inc., Cayston offers a much-needed antibiotic alternative for CF patients who battle recurrent lung infections and develop resistance to existing antibiotics.

Cayston is administered with a new device called Altera that allows patients to take the medicine in less than five minutes, a fraction of the time required for other inhaled antibiotics.

This shortened delivery time reduces the burden on patients, who -- on average -- have a treatment regimen of three to four hours per day.

Cayston will be available by the end of next week. Patients interested in learning more about Cayston should consult their physicians.

The approval of Cayston demonstrates that our drug development model, fueled by donors and volunteers like you, is working and making a real difference in the lives of people with cystic fibrosis.

Preimplantation Genetic Diagnosis (PGD) can help Cystic Fibrosis Carriers to have Healthy Children!

When both members of a couple are carriers of a cystic fibrosis mutation, there is a 1 in 4 chance that any child they have will be affected with cystic fibrosis, and a 1 in 2 chance that the child will be a carrier. New reproductive technology can help parents dramatically improve their odds of giving birth to a healthy child.

The specific reproductive technology aforementioned is called Preimplantation Genetic Diagnosis (PGD). This is an IVF procedure in which embryos are genetically tested before implantation into the uterus, allowing the selection and transfer of unaffected embryos which do not have the specific genetic condition of concern. Reproductive Biology Associates (RBA) offers PGD for individuals and families who are carriers of CF, or who have a history of CF, as well as for patients of advanced maternal age, or histories of other single gene disorders.

PGD offers a couple an alternative to agonizing over whether to terminate an affected pregnancy after prenatal diagnosis is made following amniocentesis or Chorionic villa sampling (CVS) at later stages of gestation. Since PGD is not 100% reliable and only tests for specific defects, parents should consider other prenatal genetic tests, such as amniocentesis or CVS, to confirm results.

To learn more about PGD and whether this might be an appropriate option for your family, contact RBA at 1-404-257-1900, or visit our website at http://rba-online.com. We have locations in Atlanta, Alpharetta, Lawrenceville, and Fayetteville. For specific questions about the genetics of PGD, or to discuss whether this might be appropriate for your individual situation, please contact our full-time genetic counselor at jamie.dokson@rba-online.com.

TATOO INSPIRES MILEY

Miley Cyrus' tattoo is a constant reminder never to take life for granted.
The Hannah Montana star recently had "Just Breathe" etched under her left breast as a tribute to her late grandfathers and one of her closest friends, who died of cystic fibrosis, and gets her inspiration from it.
She said: "It reminds me not to take things for granted. I mean, breathing - that was something none of them could do, the most basic thing. And I put it near my heart, because that is where they will always be."
Although Cyrus, 17, is afraid of needles, she insisted she didn't feel any pain because the tattoo meant something to her.
She told Harper's Bazaar magazine: "It really doesn't hurt if you're thinking about the meaning. I could never get a meaningless tattoo, but I think that if you're doing something that's important, that's significant in your life, it takes some of the pain away."

Beth Waits on Double Lung Transplant

Susan- I was inspired to read your story on your foundation’s website. I was prompted to learn more about the journey an adult woman with CF facing a double lung transplant can expect. I have a friend who this very minute is at the crossroads of her lifelong fight with CF. She is currently on a ventilator at the Mayo Clinic in Jacksonville, FL. At this point only a double lung transplant can save her, and she doesn’t have much time. We are rallying wisdom and prayers that her new lungs arrive soon.

Her family has been very involved in the NE Florida chapter of the CF foundation. Beth’s husband Jim has chaired the 65 Roses Golf Tournament in Jacksonville for the last 7 or 8 years and have raised hundreds of thousands of dollars for the foundation. It seems only fair that her lungs come soon- she is really fighting hard but struggling. You can read about her and monitor her progress on this great site set up so that family and friends can receive updates and rally together for Beth- www.caringbridge.org/visit/bethmccarthy. Jim, her husband, has been giving daily updates in the “Journal”, and visitors to the site have been leaving great and inspiring words of support in the “Guestbook” section.

She is a beautiful young woman and has tremendous family, friend, and spiritual support. Just felt compelled to write to you after reading your story. She is about the same age as you when you received your lungs. Thanks for making your story public for us to further understand.

Inspire Completes Patient Enrollment

Inspire Completes Patient Enrollment In Three Late-Stage Clinical Trials In Cystic Fibrosis


Inspire Pharmaceuticals, Inc. (NASDAQ: ISPH) announced today patient enrollment is complete in three of its late-stage clinical trials. "We are pleased to be executing on our strategic plan with the achievement of these patient enrollment milestones in the clinical development programs for denufosol, PROLACRIA™ and AZASITE®, as this places us in a position to have top-line results from all our late-stage clinical programs within 18 months. We would like to thank the dedicated clinical investigators, study coordinators and patients who participated in our trials as well as the Cystic Fibrosis Foundation and its affiliates for raising awareness of the importance of participating in clinical trials," stated Benjamin R. Yerxa, Ph.D., Executive Vice President and Chief, Research and Development. Denufosol Tetrasodium for Cystic Fibrosis Inspire announced today that TIGER-2, the Company's second Phase 3 pivotal clinical trial (Trial 08-110) with denufosol tetrasodium inhalation solution for the treatment of cystic fibrosis (CF), has completed patient enrollment. TIGER-2 is a 48-week trial comparing 60 mg of denufosol to placebo, administered three-times daily by jet nebulizer, in a targeted 450 CF patients. The Company expects to have top-line results from TIGER-2 in the first quarter of 2011. "We are excited that patient enrollment in TIGER-2 is complete. This is an important step toward bringing this potential new treatment to cystic fibrosis patients," said Robert J. Beall, Ph.D., President and CEO of the Cystic Fibrosis Foundation. "Denufosol's novel approach to treating the underlying ion channel defect in CF lung disease makes it a promising therapy, and we look forward to the results from this trial."