Friday, November 5, 2010
Sunday, October 24, 2010

Did You Know? Boomer Esiason Foundation has a Lung Transplant Grant Program

This is from the Boomer Esiason foundation web site. If you are a transplant candidate you may want to talk to your social worker at your clinic about this.

While the cost of transplantation is typically covered by most insurance companies, travel and relocation costs are typically absorbed by the patient’s families. The BEF Lung Transplant Grants Program is designed to help families cover the expenses that are not covered by their insurance.

Possible expenses to the recipient and family include, but are not limited to: Patient and family transportation costs for evaluation, surgery, and clinic visits after transplant; and housing, food, and living expenses associated with relocation to the transplant site.
Wednesday, October 13, 2010

Article: One Step Closer to a Drug Treatment for CF

“The normal function of a cell is to pass chloride ions across the cell membrane at a very fast speed,” Hwang said. “We know some signaling molecules elicit this reaction, much like a hand signals an automatic water faucet to dispense water. But in the case of cystic fibrosis, that signal is no longer detected by the mutated channel protein. Through some mechanisms we still don’t quite understand, malfunction of this channel protein eventually leads to bacterial infection in the lung, which is believed to be responsible for the most severe symptoms of cystic fibrosis.”

The most recent study found that manipulating the sensor of the channel protein can significantly rectify the malfunction of the mutated channel, thus opening the door to a drug design that may eventually be a “real cure,” Hwang said.
Read the whole story using the link below
Saturday, September 4, 2010

Shout out to CF Services!

It's not often that a company actually lives up to it's motto. However CF Services is one of those that stands behind theirs.
CF is Complicated
                       ...Getting your Medications Shouldn't Be!
They truly are the best at what they do, and I want to thank them for that. I had a situation where  insurance changed suddenly and my son was out of two of his medicines, which meant new prior authorizations, which I was told with this particular insurance it could be up to 2 weeks.  The very next day I received a two week emergency supply of the medicine while they work through the authorization process. 
So once again  THANK YOU CF Services!
If you aren't using them for you CF meds you should check them out.
Wednesday, September 1, 2010

Vitamin D aids Cystic Fibrosis patients

An interesting article on new Vitamin D studies and how CF patients may benefit:

Article found at:

PITTSBURGH, Aug. 31 (UPI) -- U.S. researchers say vitamin D may help treat and prevent allergic reaction to mold in cystic fibrosis patients.

Researchers led by Dr. Jay Kolls of the University of Pittsburgh School of Medicine and the Louisiana State University Health Sciences Center in New Orleans suggest vitamin D might be used to treat and even prevent allergy to the common airborne mold -- Aspergillus fumigatus.

A. fumigatus, tolerated by most people, can cause severe complications for patients with cystic fibrosis and asthma. As many as 15 percent of patients with cystic fibrosis will develop a severe allergic response -- known as allergic bronchopulmonary aspergillosis.

The study, published in the Journal of Clinical Investigation, finds aspergillosis patients had a heightened response by immune cells -- type 2 T helper cells -- that was linked to the presence of the protein OX40L.

This response was correlated with lower levels of vitamin D. Patients who did not suffer from aspergillosis had higher levels of vitamin D.

"We found that adding vitamin D substantially reduced the production of the protein driving the allergic response and also increased production of the protein that promotes tolerance," Kolls says in a statement. "Based on our results, we have strong rationale for a clinical trial of vitamin D to determine whether it can prevent or treat allergic bronchopulmonary aspergillosis in patients with cystic fibrosis."
Monday, July 5, 2010

Save the Date!

September 21st. 2010
"In a Garden of Sixty-Five Roses"
Annual dinner and auction benefiting the Living Breath Foundation.
Held at Tehama Country Club, Carmel CA
Thursday, June 24, 2010

Tobi Patient assistant program

Have you heard of the TOBI CARE Patient Support Program? It’s a new resource to help patients and healthcare professionals save time and money by assisting with a variety of financial and reimbursement matters. Ask your healthcare provider to enroll you in TOBI CARE or call 1-877-999-TOBI (8624) for more information.

Here is some more info from the website listed below:

The TOBI CARE™ Patient Support Program
Novartis Pharmaceuticals Corporation (Novartis), the maker of TOBI®, is proud to present the TOBI CARE Patient Support Program. Our new, one-stop resource for patients and healthcare professionals helps you through the TOBI reimbursement process.

TOBI CARE puts a world of support at your fingertips. Our TOBI CARE team is available to assist you and your healthcare professional with a variety of financial and reimbursement matters.
Monday, June 21, 2010

Do you know what CF is?

Check out a video taken the Air Craft Passing Camp, an event put on by The Living Breath Foundation this past June.  At the youth football camp the athletes, ages 13 to 18,  not only worked on their football skills but also learned some important information about Cystic Fibrosis!

Friday, April 9, 2010

CF Surf Experience Day Santa Cruz May 8th

This is taken from the Mauli Ola Foundation website.  My daughter Melissa did this last year and had such a GREAT time.

CF Surf Experience Day Santa Cruz May 8th
Mauli Ola Foundation has partnered with Billabong and Richard Schmidt Surf School to host the 2nd CF Surf Experience in Santa Cruz. Special thanks to our National Sponsors that have made generous contributions to make our 2010 Season a reality; Ambry Genetics, A-Med Healthcare, and Flexfit Headware. Also, thank you to everybody that volunteers and to the families that live with CF and support our cause. Until a cure is found, The Mauli Ola Foundation offers a fun saline treatment option. Mauli Ola is taking the CF Surf Experience Day Program national this year, introducing surfing to cf patients in major surf cities along our nation's coastline. Please donate and help us introduce surfing to as many surfer patients as possible.

Go to and check out the different ways to get involved and contribute to our cause: May 1st Lei Day Concert, Golf Tournament at Monarch Beach, or sign your company up to be an event sponsor. Surfers have been having fun and getting saline treatments for years, look at someone that surfs regulary and you'll see a happier and healther individual, now were sharing that with a group of people that will benefit from surfing the most...
Wednesday, February 24, 2010

How to get Cayston

Here's a link with info on how to get Cayston
Tuesday, February 23, 2010

Big News! Cayston Approved

U.S. Food and Drug Administration Approves Cayston(R) (Aztreonam for Inhalation Solution) for the Improvement of Respiratory Symptoms in Cystic Fibrosis Patients with Pseudomonas Aeruginosa)

Link: CF Foundation Plays Important Role in Bringing New Inhaled Antibiotic Cayston to Patients
Friday, February 19, 2010

The CF Discovery Series

Here are some upcoming dates for the CF Discovery Series.

If you have questions about any of the lectures contact the CFRI

The CF Discovery Series: "Lung Transplantation"
March 9, 2010 at Crown Plaza Cabana, Palo Alto, CA

The 23rd National CF Family Conference "Quest for Better Health: Whatever it Takes!"
July 30 - August 1, 2010 at the Sofitel San Francisco Bay.

CFRI Golf Tournament
August 2, 2010 at Cinnabar Hills Golf Course, San Jose, CA.

The CFRI Teen & Young Adult Day Retreat " Must See TV: CF in HD"
August 3 - 9, 2010 at Vallombrosa Center, Menlo Park CA.
Thursday, February 18, 2010

A Free Seminar at Stanford

This is a Free seminar co-sponsored by CFRI

To Register: Call 650-493-8070 or 408-971-7292
You may also register at:

Special Needs Trust Presented by Michael Gilfix Esq.

Gilfix & La Poll Associates LLP What is a Special Needs Trust? Why is it a "must do"if a child or other family member is disabled? How can a family member with disabilities have a trust and still keep public benefits? What can and cannot Special Needs Trust funds be used for?

Wednesday, March 24, 2010 (1:00 –3:00 pm)
CrownePlaza CabaƱa
4290 El Camino Real, Palo Alto, CA 94306
Monday, February 15, 2010

'Antivirulent' drugs aim to combat antibiotic-resistent bacteria

From the National Post:

Tom Blackwell, National Post
Published: Sunday, February 14, 2010

As many bacteria become resistant to the effects of the original miracle drug -- leading to thousands of deaths a year in Canada -- scientists here and elsewhere have quietly begun developing a whole new way to combat the infectious threat.