Susan's Transplant Video is on You Tube

Susan Burroughs, the Founder of Cystic Fibrosis-Reaching Out Foundation has now put her transplant video on You Tube. To see the video please go to and search "Susan Burroughs".

Saturday, December 20, 2008

Recent Patient Assistance

During these times of financial stress on so many families, we are so thankful that Reaching Out is able to help.

The father of a teen-age CF patient was recently laid-off of his job and the mother is only able to find part-time work. They have used all of their savings to make mortgage payments so they can keep their house. Reaching Out was able to assist with payments while parents both seek full-time employment

A 5 year old child with CF lives with parents and 2 siblings. Mother stays home to care for child with CF. Father works construction and had been working overtime to help with bills. Due to overtime pay, family lost Medicaid for daughter. Reaching Out helped with their rent so they could pay on medical bills.

Mother of a young CF patient had been incarcerated and child had been moved from family to family during that time. Mother was recently released and child is now back with her. The child is extremely ill due to complications from CF. Reaching Out helped with their power bill so it would not be disconnected.

The family of a child with CF has 2 other children and has recently taken in 2 nieces whose mother was unable to care for. Father works full time and takes on extra jobs for additional income. Mother is seeking full-time employment. Reaching Out helped with their rent due to a serious financial strain the family is experiencing.

Father of an infant with CF was recently laid off from his job and was having a difficult time making his truck payments. Mother is unable to work due to the child's condition. Reaching Out helped with the truck payment so that father was able to drive to seek employment and bring the child to the CF clinic.

Sunday, November 30, 2008

Cystic fibrosis: FAQs on the disease of '65 roses'

Cystic fibrosis: FAQs on the disease of '65 roses'

Last Updated: Thursday, November 27, 2008 |CBC News

Roses are a symbol for cystic fibrosis. Cystic fibrosis, or CF, is sometimes called 65 roses. The name came about after a boy overheard his mother talking about the condition on the phone and thought she said "65 roses." A single rose is often used as a symbol for the disease.

A child with cystic fibrosis may cough frequently and need to have a parent clap his or her back every morning to make it easier to breathe.

Cystic fibrosis is an inherited disease of the mucus and sweat glands. Unlike in healthy lungs, where mucus protects the airways, people with CF have mucus that becomes thick and sticky. When the substance builds up in the lungs, bacterial infections may occur.

Mucous-producing cells in the digestive system — including the pancreas, liver and intestines — and respiratory system are the major problem areas for people with CF.

What causes CF?
Jake Szatmary was sick and malnourished for the first three months of his life, before cystic fibrosis was diagnosed. (CBC)People with CF inherit two copies of an abnormal gene, one from each parent. Those with one copy are carriers who don't have the disease or show any symptoms but may pass it on to their children. About one in 25 Canadians carries a defective version of the gene responsible for CF, according to the Canadian Cystic Fibrosis Foundation.

Canadian researchers discovered the gene responsible for CF, called cystic fibrosis transmembrane conductance regulator, or CFTR, in 1989. More than 1,000 mutations of the gene have been associated with the disease.

Who is affected?
An estimated one in every 3,600 children born in Canada has CF. The severity of the disease varies, and both sexes are affected with a similar frequency.

The risk of being a carrier varies by ethnicity, according to

Ethnicity Carrier risk
Caucasian 1 in 25
Ashkenazi Jew 1 in 25
Hispanic 1 in 46
Black 1 in 65
The disease mainly affects Caucasians, which includes Europeans, Indians and people from the Middle East, said Nadine Imbleau Redman, a spokeswoman for the Canadian Cystic Fibrosis Foundation.

How is it diagnosed?
Doctors may suspect CF in babies who cough a lot and get many lung infections. A simple and painless collection of sweat is done, since people with CF have extremely salty sweat. Chest X-rays, sinus X-rays, lung function tests, analysis of sputum and stool and genetic tests on blood may also be done to help in the diagnosis. Prenatal genetic tests show if a fetus is likely to have CF.

What are the common symptoms?
Frequent coughing with phlegm.
Frequent infections such as bronchitis and pneumonia.
Salty-tasting skin.
Excessive appetite with weight loss.
Bulky bowel movements.
Poor growth.
Infertility, mostly in men.
How is it treated?
The goal is to keep the lungs clear of mucus to avoid infection. Physical therapy, such as clapping on the chest and back, breathing exercises, wearing a positive pressure expiratory mask and drinking a lot of fluids helps to loosen mucus.

Pancreatic enzymes are taken with meals to aid digestion since mucus in the pancreas makes it difficult to digest food and absorb nutrients. A vitamin and mineral supplement may be needed for the same reason. Drugs that thin the mucus, reduce inflammation in the airways, and antibiotics, taken in pill, intravenous or inhaled form, may be prescribed, according to the U.S. National Heart Lung and Blood Institute.

Eating a healthy diet, avoiding tobacco smoke, exercising frequently, and frequent hand washing are also important.

How is daily life affected?
In 2006, for the first time, more than half of all Canadians with CF were 18 years or older, the Canadian Cystic Fibrosis Foundation said. Half of Canadians with CF are now expected to live into their late 30s or longer.

When lung disease limits daily life, then lung transplants may be an option.

In 2004, a 21-year-old woman with CF received a rare lung transplant from two living donors, her mother and aunt. Such transplants are complex since both donors and the recipient are at risk.

"The CF had clogged up my lungs," Jessie McQuitty of Edmonton said at the time. "I was unable to breathe, I was unable to work, unable to school, everything."

In 2008, Canadian researchers discovered a genetic variant that can increase the severity of lung deterioration in children with CF.

These patients "experience a vicious cycle of infection and inflammation that destroys lung tissue, inhibits lung function, and erodes quality of life," said Dr. Julian Zielenski, an associate scientist in the genetics and genome biology program at the Hospital for Sick Children and a lead author of the study.

People who have the variant produce less of a protein that defends against bacterial infections. The researchers hope to one day develop a genetic test that can predict the severity of a patient's lung disease.

Wednesday, November 26, 2008

The Amazing David Adkins AGE 53

This is David Adkins..(pictured with Barbara Crews of Scottish Rite) In his own words: Well, I'm an old man (53 - born 1955). I run three days a week 52 weeks a year come hell or high water. I have completed 4 marathons (1 Atlanta 3 New York), at least 7 or 8 half marathons (and counting). I'm a strong advocate for aerobic exercise for CFers and I'm always willing to promote and encourage CFers (really everyone, but particularly CF patients) to exercise. I attribute my good health to a combination of exercise, good heath care, positive attitude, and a happy home life (in no particular order). I have been married to the love of my life, Betti, for 15 years. We have no kids, but two cats, Bogie and Maggie. I work full time, and plan to work full time until retirement (which keeps moving forward as the market moves downward).

Thursday, November 13, 2008

Update on the Adult Program of the Emory CF Center

From left to right: Welela Berhanu, RN, Arlene Stecenko, MD, Viranuj Sueblinvong, MD, Jessica Enders, RD, Lysandra Brown, MSW, Vin Tangpricha, MD, PhD, Lindy Wolfenden, MD. Photo taken at NACFC 2008.

In 2005, under the guidance of Dr. Arlene Stecenko, a CF physician with extensive experience in the care of adults with CF, a separate adult program was created at the Emory CF Center. Dr. Stecenko was joined in 2006 by Dr. Linda Wolfenden, who became the Director of the Adult Program. The adult program was initially run with significant support from Children’s Healthcare of Atlanta as well as Emory Children’s Center pediatric staff and physicians. In 2007 the Emory CF Center was visited by members of the Cystic Fibrosis Foundation’s Center Committee, the organization which accredits all CF Care Centers
in North America. That group, which consists of experts who set the national CF standards of care, made a strong recommendation that the adult program become independent of the pediatric program and rely on staff and physician providers trained in adult care. Given the solid rationale behind these recommendations and our desire to ensure that we deliver the highest quality care to our patients, the CF center staff carefully reviewed these recommendations and met with administrative and medical leaders at Emory University, Emory Healthcare, and CHOA to come up with a plan.

We are pleased that Emory Healthcare has given the adult CF program
an unprecedented level of support to meet and exceed the recommendations of the CF Foundation. With its full backing and the support of the Emory University Department of Medicine, we are now prepared to advance the care we offer to adult CF patients to a higher level. Our goal is to provide our patients with exceptional care. To that end, we are pleased to announce a number of changes to our adult CF program. Some of these are already apparent; some will become apparent in the coming months:

1. The adult CF program is now fully integrated within the Department of Medicine at Emory. Adult CF clinics take place on four days weekly at The Emory Clinic, 1365 Clifton Road, Building A, 4th floor, Atlanta, GA 30324. The Emory Clinic is about a half-mile down the road from the Emory CF Center. The phone number for appointments is 404-778-3261.

2. When required, all adult patients followed by the Emory program will be hospitalized on a specific ward (6G) at Emory University Hospital.

2. The adult CF program has expanded its staff to include many new faces, and well as keeping familiar ones. Our core physicians include
Lindy Wolfenden, MD--Adult CF Program Director
Viranuj Sueblinvong, MD--Adult CF Program Associate Director
Arlene Stecenko, MD-Chief, Division of Pediatric Pulmonary, Allergy, CF and Sleep
Vin Tangpricha, MD, PhD-Director of Adult CF Endocrinology

In addition to these physicians, others with expertise in adult specialties such as gastroenterology, surgery, and otolaryngology will be involved in the care of our patients. Hospitalized patients will also meet other members of the Emory Division of Pulmonary and Critical Care Medicine and the Division of Hospital Medicine.

Other staff includes
Welela Berhanu, RN-Clinical Nurse Coordinator
Lysandra Brown, MSW-Adult CF Social Worker
Jessica Enders, RD-Adult CF Registered Dietician
Laura-Beth Straight, MA-Research Coordinator
Deneek Hubbard-Green, NP- Nurse Practioner (starting December, 2008)

In addition, we are currently recruiting a dedicated adult CF Respiratory Therapist.

Clearly, there are a number of changes that have occurred in the adult CF program. We recognize that any type of change, even “good change” (such as marriage or becoming a parent), can be stressful and challenging at times. However, we are confident that these changes are “good changes” and that they will enable us at Emory to provide our patients with superior care. We look forward to working with you to provide you the exceptional care you deserve.

Michael S. Schechter, MD, MPH
Emory CF Center Director

New! CF Family Connection

Introducing the new CF Family Connection …
an opportunity to network with other CF family members through educational programs and social gatherings!

2009 Calendar of Events

JAN 15 Educational program
MAR 19 Social gathering
MAY 21 Educational program
JUL 16 Social gathering
SEP 17 Educational program
NOV 12 Social gathering

For more information or to be added to our email list, please contact
Lynda Ratmeyer-Fleming at or 770-716-2639

Sponsored by: CF Family Advisor Council
Childrens Healthcare of Atlanta

Wednesday, November 12, 2008

New Treatment For Patients With Cystic Fibrosis

New Treatment For Patients With Cystic Fibrosis

Kellye Lynn BALTIMORE (WJZ) ― There's a change in treatment for patients with cystic fibrosis.

Healthwatch reporter Kellye Lynn says many children with CF are not getting enough of an important vitamin.

That vitamin is Vitamin D, which is essential for bone health.

Last summer, Justin Homassel, 10, leaped off his porch backwards and broke his arm.

"I jumped and caught myself with my arm and I broke it," he said.

Broken bones are more common among children like Justin who have cystic fibrosis, a genetic disorder that causes sticky mucous to build up in the body and affects about 30,000 Americans.

"The pancreas doesn't make enzymes to digest food appropriately, especially fat so they don't absorb fat, and therefore fat soluble vitamins, the way they should," said Dr. Peter Mogayzel, Johns Hopkins Children's Center.

The result is low levels of Vitamin D, which can increase the risk of rickets and osteoporosis.

A new study out of Johns Hopkins Children's Center shows current recommendations for treating Vitamin D deficiency don't get far enough.

In the study, giving the standard 50,000 international units of Vitamin D for eight weeks was effective in only 33% of patients. It's a surprising finding and prompted Hopkins doctors to send a letter to each of their CF patients, urging an increase of Vitamin D.

The new recommendation is an extra 1,000 international units of Vitamin D a day.

"I think it's important for patients to take more Vitamin D and we believe the CF Foundation has to reevaluate this to have more appropriate recommendations for therapy," said Dr. Mogayzel.

Justin is now following that advice. His mom hopes doing so will keep looking as good as the rest of his body.

CF patients can also increase Vitamin D levels by spending 15 minutes a day in the sun without sunscreen. Doctors also recommend weight-bearing exercise.
(© MMVIII, CBS Broadcasting Inc. All Rights Reserved.)

Saturday, November 1, 2008

Low vitamin D common in kids with cystic fibrosis

By Megan Rauscher– Fri Oct 31, 9:17 am ETNEW YORK (Reuters Health) – Vitamin D deficiency is prevalent in children with cystic fibrosis (CF) and current treatment recommendations for correcting the deficiency are "inadequate," conclude clinicians from The Johns Hopkins Medical Institutions in Baltimore, Maryland.

They reviewed the charts of 262 children with CF patients treated at Johns Hopkins between 2003 and 2006 and found that vitamin D deficiency has declined but is still high; the prevalence was 86 percent in 2003 and 46 percent in 2006.

Many vitamin D deficient children remained deficient, despite getting "restorative" doses of vitamin D equal to or higher than the recommendations set by the Cystic Fibrosis Foundation, Dr. Deanna Green and colleagues report in the Journal of Pediatrics.

CF is a genetic disorder marked by the body's inability to transport chloride in and out of cells, causing mild to life-threatening complications, including recurrent and severe lung infections and delayed growth. Growing children with CF are especially vulnerable to vitamin D deficiency because a hallmark of the disorder is poor absorption of nutrients and malnutrition.

The recommended treatment dose for vitamin D deficiency is 50,000 international units (IU) of ergocalciferol (a form of vitamin D) once per week for 8 weeks for children 5 years of age or older and 12,000 IU once per week for 8 weeks for children younger than age 5 years.

But the Hopkins team that 50,000 IU per week of ergocalciferol for 8 weeks was effective in only 33 percent of the children with vitamin D deficiency, while increasing the dose to twice a week was effective in only 26 percent of children. Delivering the same dose 3 times a week corrected the deficiency in just 43 percent of children.

As a result of the findings, Johns Hopkins has amended its treatment protocol and now treats both adult and pediatric CF patients who have vitamin D deficiency with 50,000 IU ergocalciferol everyday for 4 weeks, according to a university-issued statement.

"These findings are a big wake-up call not only because they show that many children with CF are lacking vitamin D, but also because the deficiency persists even in those children who are treated with weekly doses twice or 3 times as high as the current recommendations," Green said.

"Clearly there is an urgent need to find more effective ways to restore healthy vitamin D levels," she concluded.

SOURCE: The Journal of Pediatrics, October 2008.

Wednesday, October 29, 2008

New Test Promises Quicker, More Accurate Evaluation For Cystic Fibrosis Patients

New Test Promises Quicker, More Accurate Evaluation For Cystic Fibrosis Patients
ScienceDaily (Oct. 28, 2008) — Researchers at National Jewish Health have identified a simple gene-based blood test that more accurately and quickly measures cystic fibrosis patients’ response to therapy than current tests. The test, a measure of inflammatory gene expression, could improve patient care and help clear a backlog of promising medications now hung up in clinical trials.

The researchers are publishing the results of a small “proof-of-principal” trial in the November 1, 2008, issue of American Journal of Respiratory and Critical Care Medicine.

“The currently accepted test, a measure of a patients’ ability to exhale air, has several limitations that make it ineffective for some patients and not sensitive enough for clinical trials of many new medications,” said Dr. Milene Saavedra, lead author of the study and Assistant Professor of Medicine at National Jewish Health. “By measuring the activity of genes associated with the immune/inflammatory response, we can get a more accurate picture of the biological processes occurring inside the lungs.”

Cystic fibrosis is the most common lethal inherited disease in the western world, with about 30,000 patients in the US . Most patients die of respiratory failure generally in their 30s or 40s. Lung damage is caused primarily by chronic bacterial infections and the resulting severe airway inflammation. There is a critical need for new effective anti-microbial and anti-inflammatory medications to slow and/or prevent lung damage in young patients. Several promising therapies have gone through early stages of clinical testing but their progress is being hampered by the lack of a sensitive measure of therapeutic response to medications.

Currently, response to medication is measured by how much air a person can rapidly exhale: forced expiratory volume in one second or FEV1. FEV1 cannot be performed effectively for all patients, especially young and very sick patients. Generally patients’ FEV1 does improve when inflammation is reduced, but not all patients’ FEV1 improves significantly, and changes can take weeks to months to show up. It can be prohibitively expensive to conduct phase 2 or phase 3 trials of medications long enough to detect the changes in FEV1.

National Jewish researchers thought white blood cells circulating in the blood might be a good source of biomarkers for a more sensitive and accurate test. White blood cells are the predominant cell type at sites of tissue destruction in CF patients’ lungs. As they circulate through the lungs in the blood they encounter the inflammatory environment and alter their gene expression as a result. By measuring mRNA, scientists can identify which genes are being expressed and how strongly.

The researchers evaluated 18 CF patients who were suffering severe exacerbations of their disease. They withdrew blood before and after two weeks of intravenous antibiotic therapy. The severe exacerbation and antibiotic therapy served as a condensed model of illness and response to therapy; in these cases antibiotic therapy is usually successful, and patients’ clinical symptoms and FEV1 both improve rapidly.

Using microarray gene analysis of the blood samples, the researchers identified 10 genes that differed significantly in their expression before and after therapy. Using real-time polymerase chain reaction and additional statistical tools, the researchers identified three of those genes that most accurately correlated with a positive therapeutic response: CD36, CD64 and ADAM9. CD36 and CD64 are genes associated with cells’ absorption of foreign organisms and cellular debris. ADAM9 is associated with tissue destruction that allows inflammatory cells to move through tissue. This process is also believed to contribute to permanent tissue destruction.

“The expression of these genes correlated with FEV1, other inflammatory markers, and various clinical factors,” said co-author Dr. Jerry Nick , Associate Professor of Medicine at National Jewish. “When combined with FEV1, they offered a more accurate and sensitive measure of response to therapy than either alone. We believe they could be extremely useful in clinical care of patients and trials of new CF therapies.”

The researchers are now conducting a trial of 60 CF patients to provide stronger statistical evidence for the power of CD36, CD64 and ADAM9 to diagnose a positive response to therapy by CF patients.

Adapted from materials provided by National Jewish Medical and Research Center.

Carrier Screening For CF In US Genetic Testing Laboratories:

Carrier Screening For CF In US Genetic Testing Laboratories: A Survey Of Laboratory Directors
Main Category: Cystic Fibrosis
Also Included In: Genetics
Article Date: 28 Oct 2008 - 3:00 PDT

Market pressures may have more influence on clinical practice than laboratory guidelines: That's one conclusion of a Center survey, which found that guidelines for cystic fibrosis (CF) carrier screening have only been partially adopted. David Kaufman, Sara Katsanis, Gail Javitt, Juli Murphy, and Kathy Hudson report in the October issue of Clinical Genetics that seven percent of responding genetic testing laboratories adopted two major screening guidelines issued by the American College of Medical Genetics and the American College of Obstetricians and Gynecologists, and that 13 percent have adopted neither recommendation. These findings indicate that factors other than clinical guidelines may influence laboratories' CF screening practices.

CF is an incurable, progressively disabling, and fatal disease of the sweat and mucus glands, which develops in people who have inherited two mutated copies of the CFTR gene. One in 31 Americans is a carrier of a mutated CFTR gene, making CF one of the most common major genetic disorders. In 1997, a panel convened by the National Institutes of Health concluded that genetic testing for CF should be offered to couples currently planning a pregnancy as well as couples seeking prenatal testing. Because more than 1,300 disease-causing mutations have been identified in CFTR, and different laboratories can test for different mutations, in 2001, the American College of Medical Genetics and the American College of Obstetricians and Gynocologists issued sets of CF testing guidelines (revised in 2004) to improve and standardize population-based CF carrier screening. The study conducted by GPPC focused on two primary components of these guidelines. First was the recommendation that prospective parents be tested for the a CF mutation known as the 5T allele only as a "reflex" after another CF mutation, called R117H, has been identified first. This is because although the 5T allele is relatively common, it can cause CF only when found in combination with R117H. Because the 5T allele is found in between five and nine percent of the general population, screening all pregnant couples for the 5T allele instead of testing only those with an R117H mutation can identify and alarm a large number of individuals who are not at risk of having a child with CF, and provoke unnecessary invasive prenatal testing. The second major recommendation made to laboratories was that they should only screen a panel of 23 of the most relevant, well-studied mutations, which reliably identifies the majority of couples at risk of having a child with CF but remains cost-effective.

The Center survey sought to examine how guidelines for genetic testing for CF have influenced the practice of laboratories that perform the tests - a "necessary first step," write the authors, "in understanding the effectiveness of developing such guidelines, the realities and barriers that may limit uptake, and whether adoption of guidelines (or the lack thereof) has any serious consequences for genetic screening programs." If research shows that the adoption of genetic testing guidelines improves the health outcomes of people getting the test, then finding ways to overcome barriers to their adoption will be critical.

Of 190 responding genetic testing laboratories (a 55 percent response rate), 45% offered CF screening to potential parents for the presence of a mutated CFTR gene. The survey assessed these laboratories' adoption of two primary components of the CF carrier screening guidelines: the reflexive reporting of 5T test results, and the recommended 23-mutation screening panel. While four of five CF screening laboratories followed the 5T guidelines, 90% of laboratories tested more than 23 mutations (some tested up to 150 mutations). Just seven percent of laboratories adopted both guidelines, and 13 percent of respondents adopted neither the 5T guidelines nor the 23-mutation panel.

These results suggest that laboratories' screening practices are affected by factors other than clinical guidelines - possibly including market pressures to purchase CF testing kits that test for more than 23 mutations, despite the lack of clarity about the utility of such testing in the general population. Laboratories' choice of which CF testing kits to use also may be limited by the testing platforms used in a particular lab. The authors note that their findings carry implications beyond CF, and may impact the development of recommendations for other types of genetic testing: "As new guidelines for other population-based genetic tests emerge, it will be useful and important to understand the extent of their influence on practice."

Written by Sara Brinda

Kaufman, D.J., S.H. Katsanis, G.H. Javitt, J.A. Murphy, J.A. Scott, and K.L. Hudson. Carrier screening for cystic fibrosis in US genetic testing laboratories: a survey of laboratory directors. Clinical Genetics 74: 367-373.

The Genetics and Public Policy Center at Johns Hopkins University

The tremendous success of the Human Genome Project has laid the foundation for a true revolution in public health, promising improved diagnosis, more effective medicines, and individually tailored health care. The Genetics and Public Policy Center was created in 2002 at Johns Hopkins University by Pew Charitable Trusts to help policymakers, the press, and the public understand and respond to the challenges and opportunities of genetic medicine and its potential to transform global public health.

Friday, October 24, 2008


Zanyce is my 11 month old daughter who has Cystic Fibrosis. I would to THANK YOU for helping my family in a time of need. Just when I gave up all hope Cystic Fibrosis Reaching Out Foundation was there and answered my prayers.Your help is very well appreciated.

Wednesday, October 22, 2008

ATTENTION Physically Active Adults with CF:

We need YOU for an exercise study!

We are researching salt loss in sweat during exercise in the heat and the impact that this has on fluid and electrolyte balance.

Why participate?

You will gain valuable information about your hydration and electrolyte needs during exercise in the heat. You will also find out your aerobic fitness, your percent body fat, and your bone mineral density. By participating, you will help to uncover important research findings that may impact quality of life issues for CF patients. You will also be compensated $100 for your time.

In order to participate you must meet the following criteria:

Age 18-40 years
In stable clinical status with sound pulmonary function, and approved by a CF physician for participation in this study
Regularly physically active in aerobic exercise at least 90 minutes/week for at least the past six months
Willing to perform a maximal exercise test on the bike and have your body composition measured with a DEXA (low-dose X-ray) scan (first session)
Willing to perform a stationary bike ride (low to moderate intensity) in the heat up to ~ 2hrs in duration (second session)
Willing to have a flexible blood catheter inserted into arm vein for periodic blood collection during riding
Willing to swallow a pill-size sensor for body temperature monitoring
Willing to have two small (4 mm diameter) skin biopsies removed from the shoulder blade area under local anesthesia by a dermatologist

For more information please contact:

Mary Beth Brown, Exercise Physiology Laboratory
Georgia Tech School of Applied Physiology
(404) 713-1697 email:
Or Jeannie Peabody, Clinical Research Coordinator; Emory Cystic Fibrosis Center, 404-712-3930

Who is Dr. Larry McKean?

He can be described by the profound human emotion:COMPASSIONATE

This is being reprinted in part from the Summer of 2002 “Reaching Out” newsletter written by Monique Colie and updated by Susan Burroughs.

Dr. Lawrence McKean (Dr. Larry) grew up in New Berlin, Wisconsin in a large family with 5 sisters and 2 brothers. He is the only M.D. in the family and the only sibling to look for warmer winters and leave Wisconsin. He and his wife, Martha, have a son Jonathan and another son, Peter, who died in 1999 at the age of 23.

Dr. Larry has an interest music, including classical, rock-n-roll and country-western. He enjoys listening to bands play in some of the college clubs around Athens. Dr. Larry’s other interest is his hardwood tree farm, which he started as a “legacy” to his son Peter. He shares with us that Peter was very creative and artistic, particularly working with hardwoods. In fact, he made wooden bowls and even constructed his own guitar.

He graduated from the Medical College of Wisconsin and completed his residency training in Pediatrics and his fellowship training in Allergy and Immunology at Emory University in Atlanta. He then joined the faculty at Emory University as an Assistant Professor of Pediatrics and started working with Dr. Daniel Caplan at the Cystic Fibrosis Center. He gives credit to Dr. Caplan for teaching him not just about CF, but about practicing medicine and caring for patients, not just prescribing medications. He has done research and published papers and book chapters on cystic fibrosis (CF), CF-related diabetes, and mechanisms of allergic reactions. In 1993, he left the faculty at Emory University to establish the Asthma & Allergy Clinic for Children, PC in Athens, GA. In 2002, he was asked to return to the Fibrosis Center after Dr. Caplan had a stroke. He helped to keep the CF Center running until Dr. Caplan could return. He treated both children and adults with CF and participated in studies involving treatment of infections that occur in CF patients. He is particularly proud of developing a protocol that has cleared cepacia in 5 patients. In addition to specializing in the treatment of patients with Cystic Fibrosis, Dr. McKean specializes in the evaluation and treatment of recurrent infections
in young children and the evaluation and treatment of asthma and allergic diseases.

Dr. Larry has worked with cystic fibrosis patients with his mentor Dr. Dan Caplan for many years. He had a role in helping design the CF Center that stood on the corner of Clifton and Houston Mill Road until June of this year. Even though he has not always been at the CF Center he has continued practicing medicine and treating cystic fibrosis patients throughout the years. Many of us have continued to rely on his expertise in the field of cystic fibrosis and we are thankful that he remains in the Atlanta area. He has a private practice in Atlanta with Atlanta ENT, Sinus & Allergy Associates, PC.

There have been a lot of change at the Emory Cystic Fibrosis center for the adult patients. Many of us have already felt how complicated the Emory system is to work with. In addition, we have been denied access to the physicians, social workers and healthcare team we have grown to love and trust. I am now 48 years old with cystic fibrosis. These people are the ones that I attribute to making it to this “ripe old age”. I personally need to have Dr. Dan Caplan and Dr. Larry McKean in my life: monitoring my care and coordinating my care with my lung transplant team.

When I received my “letter” telling me who I would have to see for my cystic fibrosis care, I was most upset. Then I realized I do have a choice. THANK YOU DR. MCKEAN for being there for me and all my cystic fibrosis friends.

Dr. Larry McKean
17 Executive Park Drive, Suite 250
Atlanta, GA 3032
(678) 904-4390 Office Office Manager

Ms. Jessica Enders, CF Registered Dietician

Ms. Jessica Enders, in her own words.... I received my Bachelor of Science in Human Ecology: Food, Nutrition and Dietetics from the University of Tennessee at Chattanooga, graduating in 2002. I then moved to Nashville to complete my Dietetic internship at Vanderbilt Medical Center completing the program in June 2003. I then moved to Atlanta where I began working at Emory University Hospital in September 2003 at which time I passed the Registered Dietitians Exam to become a RD. Outside of work I enjoy running in various races around Atlanta, scrapbooking and I am a black belt in USA GoJu Federation karate where I have been working out for the past 6 years. I have been married to my husband Jamie for 3 years this past May. We have two "children", Gracie a gray feisty feline, and Shadow a 70 pound sensitive black lab that allows the cat to run the house! Contact e-mail address:

Ms. Welela Berhanu, CF Registered Nurse

Ms. Welela Berhanu is Emory University's CF Registered nurse. In her own words... I am originally from Ethiopia. I have been working as a nurse since 1989. I received an Associate Degree in Nursing from Massachusetts Bay Community College in Wellesley, MA. In 2005, I received a Bachelors of Science in Nursing from Georgia State University. I joined Emory ten years ago. the last eight years I have been working in 6G in the General Medicine Unit as a bedside RN, where I had the opportunity to care for patients with many acute and chronic illnesses, including CF. Emory University Hospital's General Medicine Unit is the only specialized inpatient care unit that cares for the adult cystic fibrosis population in the Emory Healthcare system. I have gained a great deal of experience and understanding of this disease and its treatment by working closely with patients and an interdisciplinary team. Outside work, I am a full time mom taking care of my two wonderful children. Tihute is almost four and full of energy, with a great imagination. He is in a "rescue mission" each day as a fire fighter or on a helicopter rescue team. Luam is 20 months. She is quiet, ladylike and loves her shoes. I am excited about this new opportunity and loof forward to working with adults in the Cystic Fibrosis adult program. You may contact Welela at

Lindy Wolfenden, MD

Lindy Wolfenden, MD
Director, Adult CF Program
Division of Pulmonary, Allergy and Critical Care Medicine
Emory Healthcare, The Emory Clinic
Phone: 404-778-3261

There's a new face of cystic fibrosis, and it is significantly older than you might expect. That's the message of the Cystic Fibrosis Adult Program at Emory University, the only program in Atlanta providing care specific to the needs of adults living with Cystic Fibrosis (CF).
Cystic Fibrosis, a genetic disease affecting 30,000 children and adults in the United States, impacts pulmonary function, digestion and reproduction. Symptoms include mucus in the lungs, lung infections, gastrointestinal problems and impaired breathing. Defective CF genes, carried by one in 30 Americans, have been pinpointed as the root cause of the disease, and the Cystic Fibrosis Foundation estimates that up to 10 million Americans are unknowing carriers.

Emory's Cystic Fibrosis Adult Program began in 2002 in response to the unique needs of adult CF patients, and complies with a national mandate from the Cystic Fibrosis Foundation that adults with CF be treated at adult centers. As a distinct unit in Emory's Cystic Fibrosis Center, Emory's program provides care to the increasing numbers of adult patients with CF. Lindy Wolfenden, MD, assistant professor of medicine in the Division of Pulmonary, Allergy and Critical Care in Emory University School of Medicine, notes that the median age of cystic fibrosis survival has risen from 14 in 1969 to age 35 in 2004. Now, almost 40 percent of cystic fibrosis patients are 18 or older, according to the Cystic Fibrosis Foundation, and doctors, including Dr. Wolfenden, expect the median age to rise even higher through increased research capabilities.

"As we learn more about the disease, more adults are being diagnosed as adults," Dr. Wolfenden says. "An adult who is diagnosed later in life is different than an adult diagnosed as a child in terms of their disease and their medical needs." Responding to those unique needs, the adult program advises patients not just on preserving lung function, but on smoking cessation, lung transplants, fertility, gastrointestinal complications and the diabetes and osteoporosis that often result in adults with the disease.

The comprehensive program pulls together Emory pulmonologists, gastroenterologists, nutritionists, respiratory therapists, nurses and social workers who have been specially trained to support adult patients living with CF. Emory's program, which includes a 10-bed inpatient facility and access to Emory University Hospital, now serves more than 140 adult patients from throughout the Southeast, with another 100 expected to transition fully into the program within the next two years.

The program is also dedicated to aiding Emory's mission as a research institution, says Dr. Wolfenden, "We want to further the mission of patient care and research, because it's through research that we have achieved this tremendous increase in median survival." Through funding from the Cystic Fibrosis Foundation, the National Institutes of Health, and pharmaceutical companies, the adult program is contributing to a number of different studies designed to treat CF symptoms, identify exacerbating factors of the disease and improve patient quality of life.

That process results from the urgency of researchers to lengthen life spans of CF patients. "When you're in the lab, you only change one thing at a time," notes Arlene Stecenko, MD, associate professor of pediatrics and medicine at Emory School of Medicine and the Cystic Fibrosis Center's director and director of research. "When you're trying to add five or ten years of life to an individual, you can't just do one thing at a time." Instead, Dr. Stecenko says, by testing multiple hypotheses at the same time she hopes her team can make as large a difference as possible in the lives of patients.

New Pulmonologist at Emory

Dr. Viranuj Sueblinvong in her own words... I am originally from Thailand. After finishing medical school, I moved to the United States to pursue my passion in scientific research. At first, I worked in molecular biology lab at the Children's Hospital in the suburb of Chicago. I then completed my residency training in Internal Medicine at the St. Joseph's Hospital associated with Northwestern University in Chicago. Finally, I completed my fellowship training in Pulmonary and Critical Care medicine at the University of Vermont. That's where my first encounter with CF patients occurred. After my clinical training, I returned to "the bench", aka the research lab, where I could unite my interest in CF disease with my love of science. My goal is to further the understanding of CF disease as well as to find better treatments (and even better, the cure). In September 2008, I joined the Emory adult CF team from the University of Vermont adult CF program. The Emory University CF team was attractive to me because of its mission to improve the quality of care delivered to CF patients. I am very excited to be part of the team and the CF community as a whole. Dr. Sueblinvong can be reached at the main office number 404-778-3261.


The new adult social worker at Emory University Hospital is Ms. Lysandra Brown. In her own words....I received my Bachelor of Arts in English from Emory University in 1996. I volunteer with the Emory Alumni Association to give back to the community. I received a Master of Social Work from Boston University in 1999. While in Boston, I was active with the Natioal Association of Social Workers. I served on a committee for ethnic and racial affairs and presented a workshop on stress management. I returned to Atlanta after 7 years in Boston. I worked as a medical social worker at South Fulton Medical before joining the Emory Hospital and Emory clinic team. I am currently a licensed master level social worker. Outside of work, I enjoy walking in the AIDS walk, Heart walk, and plan to participate with the 65 Roses Team in the ING walk in March. I enjoy jazz, painting and discussing current events. You may contact Lysandra Brown at or contact their main office at 404-778-3261. Lysandra's direct number is 404-778-4751.

Monday, October 20, 2008

Cystic Fibrosis Patient Assistance Program

Visit for information about this new Patient Assistance Program.

Wednesday, October 15, 2008

Vitamin D Guidelines Too Low for Cystic Fibrosis Kids

Vitamin D Guidelines Too Low for Cystic Fibrosis Kids

MONDAY, Oct. 13 (HealthDay News) -- Existing guidelines for treating vitamin D deficiency in children with cystic fibrosis are too low and put patients at high risk for bone loss and rickets, a new study says.

Researchers from Johns Hopkins Children's Center looked at 262 children with cystic fibrosis (CF). Nearly half the children were vitamin D-deficient, and most of them remained persistently deficient, despite receiving restorative vitamin D doses equal to or higher than the Cystic Fibrosis Foundation-recommended 50,000 IU of ergocalciferol (a form of vitamin D) per week.

The study was published in the October issue of The Journal of Pediatrics.

CF is a genetic disorder in which the body is unable to transport chloride in and out of cells. This causes mild to life-threatening complications such as recurrent and severe lung infections and delayed growth. Because CF results in poor absorption of nutrients and malnutrition, growing children with CF are especially prone to vitamin D deficiency, according to background information in a Hopkins news release.

"These findings are a big wake-up call, not only because they show that many children with CF are lacking vitamin D, but also because the deficiency persists even in those children who are treated with weekly doses twice or three times as high as the current recommendations," study leader and lung specialist Dr. Deanna Green said in the news release.

"Clearly there is an urgent need to find more effective ways to restore healthy vitamin D levels," she added.

Until that happens, doctors should consider increasing vitamin D intake beyond the current recommendations in CF patients who are vitamin D deficient, Green and colleagues suggested. Doctors should also check vitamin D levels at least once a year in all CF patients and more frequently in patients with abnormally low vitamin D levels.

As a result of the findings, Hopkins amended its treatment protocol and now treats adult and child CF patients who have vitamin D deficiency with 50,000 IU of vitamin D daily for four weeks.

Nasal AAT achieved significant reduction in inflammation in the lungs.

Kamada reports positive results in cystic fibrosis study
Nasal AAT achieved significant reduction in inflammation in the lungs.
Gali Weinreb15 Oct 08 15:36
Kamada Ltd. (TASE: KMDA) reports positive results of its Phase II clinical trial of its Alpha-1 Antitrypsin (AAT) protein for the treatment of cystic fibrosis. The company said that AAT achieved significant reduction in inflammation in the lungs, compared with the placebo. Lung inflammation is the main symptom of the disease and the main cause of patients' deterioration.
On the basis of the trial results, Kamada will now be able to begin Phase III clinical trials with the US Food and Drug Administration (FDA). The Phase II trial was conducted with the European Medicines Agency (EMEA).

Monday, October 13, 2008

Special Donation Received

Dear Susan,

Enclosed is a $450 donation to your foundation. This money was raised through the sales of With Every Breath: Stories by and about people living with cystic fibrosis. All proceeds from this book, sold on Amazon, have gone to cystic fibrosis. I chose to support your foundation because as a cystic fibrosis patient myself, I see a need in the CF community for direct support reaching beyond just research. I believe in your mission and feel that your programs are making a positive impact on people with CF. Thank you for all you are doing to help those facing this disease!

Katherine Russell

Kathy is a board member of the CF Roundtable (United States Adult Cystic Fibrosis Association, Inc.)

Wednesday, October 8, 2008

CF Research: Progress, Hope and Challenges Today

Wednesday, November 12th 8 p.m. ET(7 p.m. Central, 6 p.m. Mountain and 5 p.m. Pacific)

Please help us spread the word about the Virtual CF Education Day Web cast on Wednesday, November 12th. You will learn the latest in CF research that was presented at the 22nd Annual North American CF Conference. Dr. Preston Campbell, Executive Vice President of the CF Foundation, will give an update about Vertex 770 and 809, Denufosol, and other potential therapies for CF. He will be joined by Dr. Robert J. Beall, CEO of the CF Foundation, to help answer questions asked by Barbara Allen, an adult with CF, and Laura Homassel, a parent of a child with CF. We’ll share the latest news, and tell you how you can get involved!Pre‐registration begins October 13th on the CF Foundation’s Web site, or Please use code PT651 when you pre‐register. (You may submit questions atthe time of registration.) Questions also may be submitted during the live broadcast. To view this Web cast, your computer must have Microsoft Media Player, version 9.0 or higher. For freeMicrosoft Media Player go to: Log in about 10 minutes before the presentation (check your time zone!) by going tothe CF Foundation Web site ( or, and click on the “Virtual CF Education Days” icon.* The screen will remain blank until the program begins. Participation will belimited to the first 1,000 people online.*It is recommended that you verify the ability to view the Web cast by watching an archived Virtual CF Education Day Web cast. You can find these archived Web casts on the CF Foundation’s Web site, or If you can’t join the live Web cast, the program will be archived on the CF Foundation’s Web site ( Virtual CF Education Day Live Web cast is made possible by an unrestricted educational grant from Genentech, Inc.

Tuesday, October 7, 2008

Claire Tinsley teaches 3rd graders about CF

“We’re having a fundraiser at Walker, and I want the proceeds to benefit CF somehow.” Those were the words of my next-door neighbor, Kerry Morris, a 3rd grade teacher at The Walker School in Marietta – words every CF parent likes to hear! Kerry wanted to the funds to be used locally, and so I contacted Amy Shipp, the Social Worker at Children’s Hospital at Scottish Rite, for ideas. She recommended the Reaching Out Foundation, and cited its many instances of financial help given to CF families in need. I was easily persuaded.
Kerry also asked if my daughter, Claire Tinsley, could speak to the third-grade class before the bake sale fundraiser; she felt it might get them more enthused if they had a face that they could connect to Cystic Fibrosis. Claire was diagnosed at birth, and so has lived with CF for almost 15 years; it is not difficult for her to talk about what her “normal” life is like.
On Thursday, September 11, 2008, I checked Claire out of Harrison High School early and drove to the Walker campus, carrying Claire’s vest machine, her inhalers, and a plastic baggie filled with the myriad pills she takes in one day. At the library where the kids were politely seated, we plugged in the vest machine, and Claire introduced herself, telling the students about the basics of CF - she then asked for a volunteer to try out the vest. Claire chose a boy who was closer to her size than many of the other 9 and 10 year-olds and strapped the vest onto his chest. She programmed the frequency and pressure (not too high!), and turned it on. He immediately began laughing, as did all the children, and they got their first lesson in airway clearance!
She spoke briefly about her symptoms, her daily routine and her feelings of being a normal kid with just a slightly different lifestyle. She then opened the floor to questions and boy, did they have questions!
Q. “Do the pills taste bad?” A. No, except sometimes the antibiotic pills are big, and they taste bad if I don’t swallow them quickly.
Q. “Are there any activities you can’t do?” A. I can pretty much do anything, except I’m not supposed to scuba dive, or go to a very high altitude, except when I’m in a pressurized airplane.
Q. “Can you go trick-or-treating?” (He was worried because she told them she does her treatments at night, and that they take a long time). A. “I never miss it!”
Kerry gently closed the floor to questions and the kids gave Claire a round of applause. The next week, she received a stack of thank you notes written in neat, cursive handwriting; one little girl wrote, “I love you. I want you to be my babysitter.” I don’t think Claire could receive any greater compliment.
The Walker School fundraiser netted around $900, and we couldn’t be happier to see that donated to the Reaching Out Foundation.



Cystic Fibrosis affects more people than Down syndrome, muscular dystrophy, and sickle cell anemia combined and the worst part is there is no cure it.

CF Patient News

Dear Reaching Out Foundation (Susan),

Once again we wanted to thank you so much for your help. I was not expecting to get so much help from that email. Even a little would have been appreciated. Because of what you have done for us, we were able to pay our bills for the month, and pay the September payment. We are now back on track with our house payment. We used the extra for past due bills that we had been staying one step in front of. We accepted the help with so much gratitude and thankfulness for your foundation. We always realize we are taking help that could have went to other places where it was just as badly needed. No family could thank you more and thank God for your being there for us.

Both Chelsi and Rocki have had exacerbations the past two weeks complicated with bronchitis and asthma, so we have had a sleepless two weeks. They are both feeling better now and I am praying that it does not turn and come back around. I hope your family is doing well and none of this has touched them ....and especially you.

Every single day we think of you Susan and the trials you are going through. We are praying that the treatments go well and, if not easier, get more comfortable for you as time goes by. Be safe in your journey for treatments, those drives are long and tiring, and I could not believe you drove yourself. It takes us 2 1/2 hours to get to Atlanta. Remember if you ever need someone to help, I am available. Our hearts and minds are with you daily. We will keep reading your web page for updates. God Bless You.

I am sending pictures of the girls. Rocki was able to be in the Jr. Miss pageant at the school and placed in the finals. It was a scholastic pageant so I was very proud of her. She did not feel well at the time, but she did a good job. The other girls had spent hundreds of dollars on their dresses and hair, but Rocki wore a borrowed dress and I did her hair.....................and she still placed in the finals. It was her first pageant and I don't think she is eager to do that again. Chelsi is doing well in school. This illness was a little setback, but her disability coordinator, Ms. Swindle, is very good about helping her keep track of her work while she is out.

Cystic fibrosis has certainly taught me one thing clearly, that life is a constant circus and we are the jugglers, always trying to keep so many things in the air at once.

Thank you. Thank you with all of our hearts.

Rocky, Vicki, Chelsi, and Rocki
Clayton, Georgia

Tuesday, September 30, 2008

Help With Utilities

The single mother of a teen-aged CF patient was recently laid off of her job. She has found new employment but had not yet received her first paycheck. Their power had been disconnected, making it impossible for the patient to do her nebulizer and vest treatments. Reaching Out paid the power bill for the family.

Young Patient Needing Help

A 16 year old CF patient is not able to live with her parents due to their cigarette smoking in the house. This makes it very difficult for her to breathe in this unhealthy environment. She is trying to take care of her self as well as possible, but has problems being able to pay for her medications. Reaching Out has helped with the payment of some of her medications.

Friday, September 26, 2008

Scientists use pigs to try to beat cystic fibrosis

Scientists use pigs to try to beat cystic fibrosis

By Will Dunham Thu Sep 25, 2:45 PM ET

WASHINGTON (Reuters) - U.S. scientists have created pigs that appear to develop cystic fibrosis just as people do, a step they hope will accelerate efforts to tackle the disease.

Writing in the journal Science on Thursday, scientists at the University of Iowa and the University of Missouri said they created genetically engineered piglets with the same mutation that causes cystic fibrosis in people.

Studying how the disease unfolds in these pigs may provide insights into cystic fibrosis that thus far have eluded scientists and could point toward new treatments or maybe even a cure, said Dr. Michael Welsh of the University of Iowa.

People get CF when they inherit two mutated copies of a gene called CFTR, which was pinpointed as the cause in 1989. The disease causes mucus to accumulate and clog some of the organs in the body, especially the lungs and pancreas.

The Cystic Fibrosis Foundation, which helped fund the study, said about 70,000 people worldwide, including 30,000 people in the United States, have CF. People with the disease can expect to live to about age 37.
Scientists create animal "models" of a disease in order to perform experiments that would not be possible with people. Mice with the genetic abnormality that causes cystic fibrosis have been developed, but the disease presents itself very differently in these rodents than in people.
"Unfortunately, the mice leave something to be desired," Welsh, who helped lead the study, said in a telephone interview.

"They don't get the pancreatic disease like people with CF get. They don't get the lung disease like people with CF get. They don't get the intestinal disease like people with CF get. There's been many questions that can't be answered," he added.

"The onset of these problems is difficult to track down in humans because sometimes they happen before birth or sometimes they happen silently," added Christopher Penland of the foundation.
This is the latest example of pigs used for human medical needs. For example, cardiac patients can get pig heart valves.
The scientists developed pigs with cystic fibrosis because their lungs have many characteristics of human lungs.
"Right now, if you want to do experiments to find treatments or therapies for the lung disease that is fatal for people with CF, you would have to experiment on kids that have CF," Randy Prather of the University of Missouri added.

The disease in pigs closely mimicked the initial stages of the disease seen in people. The scientists are waiting for them to develop lung disease typical of CF "so we can start experimenting in ways that have never been possible," Prather said in a statement.

Tuesday, September 23, 2008

Promising New Approach To Treating Cystic Fibrosis Lung Infection

Researchers at the University of Calgary have found a new method of fighting severe lung infections in people with cystic fibrosis (CF). These findings are published in Proceedings of the National Academy of Science USA, this week. Communities of bacteria grow in the lungs of people with CF. Pseudomonas aeruginosa is a common bacterium found in these communities and is often associated with severe lung infections. Pseudomonas represents a constant and ever present threat to the health of people with CF. Dr. Michael Surette, Professor of Medicine at the University of Calgary, and his team, working with Dr. Harvey Rabin and the Calgary Adult CF Clinic have found that a group of previously overlooked and often undetected bacteria in these communities, the Streptococcus milleri group (SMG), compounds the danger of Pseudomonas aeruginosa. Currently, doctors have treated Pseudomonas with antibiotics, however, the Pseudomonas family of bacteria is increasingly becoming resistant to treatment. Dr. Surette's research shows clinical benefit simply by treating SMG, and thereby disrupting the bacterial community. Doctors at the Calgary Adult CF Clinic (Foothills Hospital) have already tested this new approach successfully, with patients admitted to hospital with severe lung infections. People treated with SMG-targeted therapies quickly returned to a stable state. "This is important new information," said Dr. Michael Surette. "In our small patient group, the laboratory findings have been used to guide treatment, with positive results." The research project, funded by the Canadian Cystic Fibrosis Foundation, has led to a real alternative to combating severe lung infections in persons with CF. Early study results show that it may also be a treatment option for individuals with chronic lung infections unrelated to CF. "These findings underline the importance of supporting CF research," said Cathleen Morrison, Chief Executive Officer of the Canadian Cystic Fibrosis Foundation. "In this case, laboratory research has been translated rapidly into actual treatment, helping people with cystic fibrosis fight back against aggressive infections." ----------------------------Article adapted by Medical News Today from original press release.

Wednesday, September 10, 2008

Special Milestones

Eighth Anniversary of Susan Burroughs’ new lungs,
her 48th birthday
and her 20th wedding anniversary!!
Donald Cross’ 36th birthday
Honoring Susan for her courage and ongoing gift to others

Traveling With Cystic Fibrosis

In-Depth Education
Thomas J. Newton, RCP, RRT For someone with a chronic lung disease like cystic fibrosis (CF), traveling can be fun and exciting. Unfortunately, it might also include the wrong kind of excitement. Here are some examples of excitement that you could do without:
Running out of your medication
Not having a place to plug in your compressor
Getting short of breath at higher elevations or in an airplane
Not having any oxygen on the plane because you forgot to call the airlines ahead of time to arrange for it
Not knowing where to go if you have an emergency

Preparation Is the KeyWhether you travel by car, boat, train, or plane, being prepared is the key. Preparation is important not only for long trips lasting several days or weeks but also for shorter excursions lasting only one day.Before embarking on a trip, be sure to talk with your healthcare provider and cystic fibrosis healthcare team. They can help you plan your medical care during your trip.If you are planning to travel and are unsure of your lung function, check with your healthcare provider. This is especially important if you plan to fly or travel to higher elevations, such as the mountains. People with altered or impaired lung function may have more symptoms at higher elevations, especially if they already use oxygen or have poor exercise tolerance.Normal Lung Function and Normal Exercise ToleranceIf you have normal lung function and normal exercise tolerance:
Take more than enough medications to get you through your trip.
Ask your doctor if you can substitute metered-dose inhalers (MDIs) with spacers for some of the inhaled medications that you normally take using a nebulizer. Metered-dose inhalers may be more practical, since you may not always have access to an electrical outlet for your nebulizer while you are traveling. Common medicines that come in inhaler form are albuterol (Proventil or Ventolin), cromolyn (Intal), ipratropium (Atrovent), and inhaled steroids.
Ask your healthcare provider if you can be off Pulmozyme (rhDNase) and/or TOBI (tobramycin solution for inhalation) for the duration of your trip, or at least for parts of it.
Ask your healthcare provider about trying a PEP (positive expiratory pressure) mask or a Flutter or Acapella mucus clearance device to clear your airways. These devices are easy to learn and are very portable. They can also be used in a car, plane, train, or boat without the assistance of another person.
Make sure that battery-powered machines are right for you. Battery-powered machines work well but are a bit slower and are more expensive than standard electrical devices. Also, not all insurance policies pay for them. Important: If you are going to purchase a battery-powered model, check how long the battery lasts on a full charge. This will give you an idea of how many treatments you can get out of a charged battery. This is important if you are taking multiple medications, such as Pulmozyme and TOBI.
Impaired Lung Function and/or Poor Exercise ToleranceIf you have impaired (moderate to severe) lung function and/or poor exercise tolerance:
Follow the instructions noted above.
Let your healthcare provider know about your trip at least one month in advance.
Find out if you will need oxygen while traveling by airplane or when visiting higher elevations. Your healthcare provider may want to test your oxygen needs before you take the trip.
Check with your oxygen supplier to help coordinate oxygen delivery in connecting cities and at your final destination.
Bring extra medication with you. Trips can be delayed because of bad weather or missed connecting flights.
Your Medical History Checklist Keep a copy of your medical history with you in case of any unplanned trips to an emergency room or hospital. Your medical history should include:
Your diagnosis -- cystic fibrosis, as well as any other medical problems you may have, such as diabetes or asthma
All current medications, including TOBI (even if you are off cycle) and oxygen (liters/minute)
Last chest x-ray report
Information about your central intravenous line, portacath, or Broviac (if you have one)
Information about your G-tube or button (if you have one)
Last sputum culture
Last pulmonary function test
Information indicating whether you have ever coughed up blood and the last time you did
Information indicating whether you have ever had a pneumothorax
The names and phone numbers of all your healthcare providers
Ask your CF team to provide you with the addresses and telephone numbers of CF centers along the way or close to where you will be staying. This information may come in handy in the event you need to consult a CF specialist while you are on your trip.Bon Voyage! Letting your CF team know about your trip well in advance can make traveling easier. That will give them enough time to help you prepare for your trip. And it will give you more time to have fun while you are away.This article was written by Thomas J. Newton, RCP, RRT, a clinical specialist in pediatric respiratory care and a CF team member at a hospital for children. It was reviewed in 2007 by James W. Wallace, MD.ReferencesBreathin’ Easy: A Guide for Travelers With Pulmonary Disabilities. Available at: Accessed January 29, 2004. California Thoracic Society and the American Lung Association of California. Safe Flying For People With Lung Disease. 2002. Available at: Accessed January 29, 2004.
Top of Page

Drew’s Views

My name is Drew and I’m 22 years old with cystic fibrosis. Although I have CF, CF doesn’t have me. If for some reason my picture is not self-explanatory, I am a girl with a boy’s name.
I was diagnosed with cystic fibrosis when I was two years old after my cousin, Bess, was born and diagnosed. My parents had taken me to doctors to try to figure out what was wrong, but the doctors said I would “grow out of it.” I’m still waiting…
Aside from having CF, I lead a relatively normal life. Like most people, I put hot sauce on everything, refuse to lick envelopes and set my alarm to wake up on a :22 or :44. This constitutes as normal, right?!
Growing up, I was very involved in soccer, swimming and dance. I was a very active child and this has greatly contributed to my good health. My parents never acted as though I was any different than my brother and sister (who don’t have CF). I have never felt like CF has made me less capable than anyone else.
I attended Georgia State University in Atlanta on an academic scholarship. I had two majors – Speech/Communications and Journalism – and graduated with a 4.0 GPA. If anybody was wondering, yes, I am patting myself on the back right now. J I have been working in Marketing for over two years.
In my (limited) free time, I like to go to the gym, go to Braves games and go out with friends. I also enjoy writing, reading, doing puzzles and participating in other nerd-like activities.
Back to life with CF…From 1996 to 2002, I attended a week-long summer camp for people with cystic fibrosis. That’s where I met some of the best people I have ever known. The CF community shares an incredible bond that cannot be understood by many. Although life with CF has had its ups and downs, I am happy to be part of such an amazing network of people.
By writing for the Reaching Out Foundation, I hope that I can inspire someone, somewhere. While I can ramble on and on about topics that interest me, I’m extremely open to questions or suggestions. If you have any ideas, email me at

Patricia "Pat" Tatro


Dear CF Patients and Families,

It has been a great privilege and honor to serve as your social worker in the CF clinic for the past 13 years. In the reorganization that is occurring at the Emory CF Center my position will no longer be funded. It is with sadness that I must say good-bye to you.
My wish for each and every one of you is:
1. Take care of yourself
2. Do your treatments as your doctors prescribe
3. Come to clinic.
I want you to be well so you can realize all of your hopes and dreams.
Love, Pat

In Loving Memory of Heather Skillings Higginbotham

A generous contribution has been made by Heather’s family;
Her parents Babs and Shaw and Husband Jerry, to the
Cystic Fibrosis – Reaching Out Foundation.

The purpose of the donation is to assist other CF patients and families through Reaching Out’s programs.

Our Sincere Thank You,
Reaching Out

Heather with her “baby”, Toby

Changes Ordered for Inhalers


Albuterol metered dose inhalers (MDIs), also called “short-acting” or “rescue” inhalers, are made by several manufacturers. They have traditionally used chlorofluorocarbons (CFCs) to “propel” the albuterol into the lungs. But now, a new safe and effective alternative propellant, hydroflouroalkane (HFA), has been created to replace CFCs, and will become the required standard for all inhalers starting in 2009. (See official FDA announcement to learn more.)You don’t have to wait until 2009 to make the switch, you can do it today. Many HFA albuterol inhalers are already available. Talk to your doctor today about writing a new prescription for an HFA inhaler and make the switch early so you'll make the 2009 deadline. Between now and December 31, 2008, CFC inhaler production will begin to be phased-out. But as the supply of CFC inhalers decreases, supplies of HFA inhalers will increase to ensure that the total supply meets the total patient demand, up to and beyond the 2009 required transition date.HFA albuterol and levalbuterol medications currently available include:
Proventil-HFA (NDC 00085-1132-01) from Schering-Plough, Ventolin-HFA (NDC# 0173-0682-00) from GlaxoSmithKline lbuterol-HFA (NDC 59310-579-20) from IVAX ,Xopenex-HFA (NDC 63402-510-01) from Sepracor


Susan Burroughs during Photopheris treatment in
Birmingham August 2008

Photopheris is a therapeutic technique in which a patient’s lymphocytes (white blood cells) are
collected by a blood separation device. The lymphocytes are then exposed to ultraviolet light in combination with the drug 8-Methozypsorlen. This drug is a photosensitizing agent which becomes active when it is exposed to ultraviolet light. After this exposure, the lymphocytes
are returned to the patient. These treated cells stimulate the immune system to attack
the cells causing the problem. The process is similar to an auto vaccination.

By: Susan Burrough

Monday, September 8, 2008

Post Lung Transplant

Diagnosed with Chronic Rejection?
Wait don’t give up yet…. By Susan Burroughs

Few things strike more fear in a transplant patient than hearing the words:
chronic rejection. I received my TWO NEW LUNGS on May 23, 2000. This winter, I was faced with that unfortunate diagnosis 8 years post transplant. I was terrified—distraught, but I knew there was hope.
Susan in Birmingham undergoing
treatment August 2008

My transplant center, The University of Alabama at Birmingham, is one of the only centers in the southeast that does a procedure called “photopheresis” for lung transplant patients. Many transplant centers do not consider this treatment as an option. UAB, however, uses it on all of their patients in rejection, usually at the first sign of trouble.
Before I could start photopheresis, I had to have a Vortex port inserted into my chest that would stay for the duration of the photopheresis treatments. I then got a seven day dose of thymoglobulin to suppress my immune system dramatically. The photopheresis itself did not start for another five weeks. I got my first treatment on August 5, 2008. During photo, blood is removed from your port in six cycles. During each cycle, the blood is run through a centrifuge where all the white blood cells (lymphocytes) are separated off. After 3 – 5 hours, the collected white blood cells are shot up with UVADEX and then hit with UV radiation during “photo activation”. When this step is complete, your radiated cells are transfused back into your body and you are ready to go.
The point of all of this is to ‘reprogram’ your white blood cells in hopes that they will stop attacking your rejecting organ. How does it actually work? No one really knows for sure. They just know after twenty years plus of treating heart transplant patients in rejection, photopheresis has been quite successful. Over the last ten years, it has been quite successful in lung transplant patients as well.
Photopheresis isn’t guaranteed to work, but what in life is? However, this treatment has proved over and over again to stabilize the declining pulmonary functions of lung transplant patients and in most cases, the pulmonary functions have improved.
The side effects of the treatment are minimal. The medicine used in photopheresis will make you more sensitive to sunlight for about 24 hours after treatment. For this reason, I have to take some simple but very important precautions to protect my eyes and skin. i.e. wear sunglasses, sunscreen and long sleeves. For 24 hours.
The treatment for lung transplant patients is approximately 15 months and I will receive 30 treatments over the 15 month time span. I will receive 2 treatments with each visit. For the first 6 visits, I will go in 3 week intervals. For the next 3 visits, 4 week intervals; the next 3 visits, 5 week intervals; next 3 visits, 6 week intervals. Right now, I expect to be finished with the treatment by September 2009.
After my transplant, my pulmonary functions were in the high to low 90’s. They dropped to the 70’s. This alerted my transplant team to be aggressive and start the treatment right away. Now, before transplant, I lived with pulmonary functions in the mid- 20’s to mid-10’s. So even if I stabilize in the 70%. I will never regret getting a double lung transplant. I continue to remain active during the treatments by playing tennis. I thank God and my donor every day for my gift of life.

If you would like to track my progress over the next several months, please visit

Breakthrough In Fight Against Deadly Superbug

Early Detection Method Greatly Increases Chances Of Survival
ScienceDaily — A research team led by University of Sunderland scientists has made a major breakthrough in the fight against a deadly hospital infection which kills tens of thousands of people every year, and it will be available within the next year.

Experts have discovered a technique for the early detection of the superbug pseudomonas aeruginosa which particularly infects patients with cystic fibrosis. 70,000 people worldwide are affected by cystic fibrosis and on average around 50 percent of those will be infected with the superbug – 50 percent of those will die.
Although the research concentrated on the superbug’s relation to cystic fibrosis, pseudomonas aeruginosa also attacks patients with localized and systemic immune defects, such as those suffering with burns, patients with AIDS and cancer.
According to the Centre for Disease Control and Prevention in the USA, Pseudomonas aeruginosa accounts for 10 per cent of all hospital infections.
While the superbug is very difficult to cure as it is highly resistant to antibiotics, early detection makes a huge difference to a patient’s chances of survival. Now for the first time, the University of Sunderland–led team has discovered a technique that can identify the superbug within 24-48 hours of infection, greatly increasing a patient’s chances of survival.
The team is led by Professor Paul Groundwater and Dr Roz Anderson at the University of Sunderland, in collaboration with colleagues Professor John Perry, Freeman Hospital, Newcastle, Professor Arthur James, Northumbria University and Dr Sylvain Orenga, bioMérieux, France
Prof Groundwater says: “This superbug has a massive impact on people who are immunocompromised, for example patients with severe burns, cancer and AIDS.
“It is calculated that 28 per cent of people who have undergone transplant surgery are infected by pseudomonas aeruginosa. We hope our research will make a big difference in the survival rate of many thousands of vulnerable people throughout the world.
“The bacteria infect the fluid on the lungs of cystic fibrosis sufferers. It also infects patients in intensive care units. It is really difficult to treat, and hospital staff need to know very quickly if someone has been infected by it.
“In our new diagnostic method a non-coloured compound reacts with an enzyme present in pseudomonas aeruginosa and produces a very distinctive purple colour which indicates the presence of the bacteria. This technique works on 99 per cent of the strains of this superbug.”
The research has been sponsored by the multinational biotechnology company bioMérieux. The company, based in France, designs, develops, and produces a wide range of diagnosis systems for medicine and industry.
“bioMérieux is very proud to have participated in and supported this research that will help in the fight against healthcare associated infections - a strategic focus for our company,” says Dr. Peter Kaspar, bioMérieux corporate vice-president of research and development. “This discovery will enable bioMérieux to bring additional high-medical value tests to clinicians and positively impact patients’ treatment and their follow-up care.”
Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 70,000 children and adults worldwide. A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections, obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
Pseudomonas aeruginosa is a major cause of infection among patients with immune defects. It is tolerant to many detergents, disinfectants and antimicrobial compounds and is difficult to control in hospitals and institutional environments. It causes urinary tract infections, respiratory system infections, dermatitis, soft tissue infections, bacteremia, bone and joint infections, gastrointestinal infections and a variety of systemic infections, particularly in patients with severe burns and in cancer and AIDS patients who are immunosuppressed. Pseudomonas aeruginosa infection is a serious problem in patients hospitalized with cancer, cystic fibrosis, and burns. The case fatality rate in these patients is near 50 percent.
According to the Centre for Disease Control and Prevention in the USA, pseudomonas aeruginosa currently accounts for 10.1 per cent of all hospital infections

Nutrition Information

Milk, Calcium and CF:
True or False?
by Liz Revilla, MS, RD, CSP
(Adapted with permission from Terri Schindler, MS, RD)

Drinking milk increases mucus production and also makes mucus thicker.

False. Milk is an emulsion (drops of one liquid are dispersed in another liquid), which can create a feeling in the mouth which may be mistaken for mucus. Milk does not increase mucus production or make it thicker. It is safe for individuals with CF to consume.

The calcium in milk (or in foods) can increase your risk of developing kidney stones.

False. The calcium in milk binds with a salt, called oxalate, in the intestine. This binding actually reduces the risk of kidney stones.

Milk is a good source of vitamin D.

True. Milk is an excellent source of vitamin D, as well as calcium and protein. Not all dairy products contain vitamin D, however. For example, ice cream, cheese, and some brands of yogurt are not fortified with vitamin D.
Because milk is a beverage, it does not require enzymes.

False. Milk contains protein, fat and complex carbohydrates. It is a good idea to take a snack dose of enzymes when you drink milk.

You cannot tell if you are getting enough calcium in your diet by checking the level of calcium in your blood.

True. Your body will take calcium from your bone, if you do not getting enough calcium in your diet. Calcium controls muscle contractions, including the heart muscle, so your body will take calcium from your bone to keep your blood calcium level normal. Your dietitian can help you figure out if you are getting enough calcium from your diet.

Review article: Milk Consumption Does Not Lead to Mucus Production or Occurrence of Asthma. Wunthrich et al. Journal of the American College of Nutrition, Vol. 24, No. 6, 547S-555S (2005).

Curhan G, Willett WC, Rimm E, Stampher MJ. A prospective study of dietary calcium and other nutrients and the risk of symptomatic kidney stones. N Engl J Med 1993;328:833-8

Help With Mortgage

The mother of a young CF patient was recently divorced and is not receiving financial assistance from the father. Mother had to miss time from work to care for her child and had fallen behind on mortgage payments. Reaching Out assisted this family by making a mortgage payment and helped with their power bill.

Assistance With Medication

A large number of CF patients are on hypertonic saline which is not covered under Medicaid, Medicare or health insurance . This medication has been shown to help with lung congestion. Reaching Out has assisted with payment for those unable to pay for it.

Monday, August 18, 2008

CF Patient News

Gavin became the Georgia State Champion for his wakeboard division (called Mini Outlaws- "Outlaws" are the highest division in amateur before going pro......, so the youngest group are called Mini Outlaws)! He had a great day and posted his best score ever in a tournament despite a run in with some choppy water!!! It was awesome! He was pretty mad when he finished his run, because he didn't have time to complete his last 2 tricks due to the rough conditions, but after asking "do you think that I can still take first place?" and my telling him that he had a very good chance of it - he calmed down a little bit.

So - he's officially been invited to compete for Georgia in the National Championships in California...........looks like we're headed out west in October!!

Thursday, August 14, 2008

Patient Assistance

A single mother with CF is on disability. Reaching Out paid for one of her necessary medications which is not covered by Medicare.

Patient Assistance

The father of a newly diagnosed infant with CF is working full time but the family was behind on utilities because of unexpected expenses. Mother is unable to work with a newborn. The family was helped by Reaching Out paying the utilities for them.

Patient Assistance

Reaching Out helped a patient who no longer has insurance and does not qualify for Medicaid by helping pay for his medication