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".

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