Beth Waits on Double Lung Transplant

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

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

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

Inspire Completes Patient Enrollment

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


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

Recent Patient Assistance

A teenager was recently diagnosed with CF. Both parents had been out of work for several weeks. Mother's unemployment was about to end. Reaching Out helped by paying the family's power bill.

Is Your Showerhead Harboring Hidden Dangers?

WASHINGTON (AP) - In what may be the scariest shower news since Alfred Hitchcock's "Psycho," a study says showerheads can harbor tiny bacteria that come spraying into your face when you wash.

People with normal immune systems have little to fear, but these microbes could be a concern for folks with cystic fibrosis or AIDS, people who are undergoing cancer treatment or those who have had a recent organ transplant.

Researchers at the University of Colorado tested 45 showers in five states as part of a larger study of the microbiology of air and water in homes, schools and public buildings. They report their shower findings in Tuesday's edition of Proceedings of the National Academy of Sciences.In general, is it dangerous to take showers? "Probably not, if your immune system is not compromised in some way," lead author Norman R. Pace says. "But it's like anything else — there is a risk associated with it."The researchers offer suggestions for the wary, such as getting all-metal showerheads, which microbes have a harder time clinging to.Still, showerheads are full of nooks and crannies, making them hard to clean, the researchers note, and the microbes come back even after treatment with bleach.People who have filtered showerheads could replace the filter weekly, added co-author Laura K. Baumgartner. And, she said, baths don't splash microbes into the air as much as showers, which blast them into easily inhaled aerosol form.It doesn't seem as frightening as the famous murder-in-the-shower scene in Hitchcock's classic 1960 movie. But it's something to be reckoned with all the same.

The bugs in question are Mycobacterium avium, which have been linked to lung disease in some people. Indeed, studies by the National Jewish Hospital in Denver suggest increases in pulmonary infections in the United States in recent decades from species like M. avium may be linked to people taking more showers and fewer baths, according to Pace.Symptoms of infection can include tiredness, a persistent, dry cough, shortness of breath, weakness and "generally feeling bad," he said.

Showerheads were sampled at houses, apartment buildings and public places in New York, Illinois, Colorado, Tennessee and North Dakota.The researchers sampled water flowing from the showerheads, then removed them, swabbed the interiors of the devices and separately sampled water flowing from the pipes without the showerheads.By studying the DNA of the samples they were able to determine which bacteria were present.They found that the bacteria tended to build up in the showerhead, where they were much more common than in the incoming feed water.Most of the water samples came from municipal water systems in cities such as New York and Denver, but the team also looked at showerheads in four rural homes supplied by private wells. No M. avium were found in those showerheads, though some other bacteria were.In previous work, the same research team has found M. avium in soap scum on vinyl shower curtains and above the water surface of warm therapy pools.And stay tuned. Other studies under way by Pace's team include analyses of air in New York subways, hospital waiting rooms, office buildings and homeless shelters.

The research was funded by the Alfred P. Sloan Foundation and the National Institute of Occupational Safety and Health.Virginia Tech microbiologist Joseph O. Falkinham welcomed the findings, saying M. avium can be a danger because in a shower "the organism is aerosolized where you can inhale it."In addition to people with weakened immune systems, Falkinham also cited studies showing increased M. avium infections in slender, elderly people who have a single gene for cystic fibrosis, but not the disease itself.Two copies of the gene are needed to get cystic fibrosis, but having just one copy may result in increased vulnerability to M. avium infection as people age, said Falkinham, who was not part of Pace's research team.___

"Thank You" to Reaching Out

I am an adult CF patient on disability. My husband recently lost his job. Reaching Out helped me with a hospital bill payment. I am so thankful for the kindness and help that Reaching Out offers to CF patients and families. THANK YOU SO MUCH!

Dear Reaching Out:
I can't thank you enough for your help this month.As a CF Mom and single parent, I have really been strugglingto handle all of the bills I have to pay. Thank you so much for your help and thank you for the surprise GAS CARD! What a big help!

Thank you for your act of kindness toward our family. May God continue to Bless your Organization.

Lungs 4 Joseph

Joseph is waiting for his new lungs. Check out his blog spot and also help him raise the money he needs for the transplant.

New Resource added to www.reachingoutfoundation.org

1. The Power of Two: A Twin Triumph over Cystic Fibrosis (added: 19-Aug-2009)
http://www.stenzeltwins.com
Book Summary
The tragedy of cystic fibrosis has been touchingly recounted
before, but this is the first book to portray the symbiotic
relationship between twins who share this life-threatening
disease through adulthood. Isabel Stenzel Byrnes and Anabel
Stenzel tell of their struggle to pursue normal lives while
grappling with the realization that they might die young.
Their story reflects the physical and emotional challenges
of a particularly aggressive form of CF and tells how the
twins bicultural heritage Japanese and German influenced the
way they coped. The Power of Two is an honest and gripping
portrayal of day-to-day health care, the impact of chronic
illness on marriage and family, and the importance of a
support network to continuing survival. These two remarkable
sisters have much to teach about the power of perseverance
and about the ultimate power of hope.

New Resource added to www.reachingoutfoundation.org

1. Foundation Care (added: 19-Aug-2009)
http://www.FoundCare.com
Full Service Pharmacy
You may qualify for FREE Hypertonic Saline and Vitamins..
call 877-291-1122

Transplant, religion help 26-year-old breathe easier

CYSTIC FIBROSIS South Africia's unsung killerBy

By David Furlonger

Cystic fibrosis, traditionally regarded as a "white" disease in SA, is proving to be no respecter of colour. Instead of the few dozen patients formerly believed to suffer from the inherited chronic disease, doctors now believe numbers could run into thousands - most of them undiagnosed.
Indeed, some researchers believe thousands of black South Africans may have died from cystic fibrosis complications without the symptoms being recognised.
"Children who died after being diagnosed with malnutrition, lung infections or diarrhoea may well have been displaying the symptoms of cystic fibrosis," says Professor Michele Ramsay, head of the molecular genetics laboratory in the department of human genetics at the SA national health laboratory service.
Cystic fibrosis is caused by a defective gene that causes the body to produce a thick, sticky mucus that clogs the lungs and pancreas. Common results are life-threatening lung infections and an inability to break down and absorb food. Typically, patients suffer from persistent coughing, shortness of breath, poor growth and weight gain despite a healthy appetite, and difficulty in performing bowel movements.

Prof Michele Ramsay - Symptoms unrecognised
Life expectancy among cystic fibrosis sufferers has improved in recent years but it is still a terminal illness. In the 1950s, most children diagnosed with the disease died before they reached primary-school age. As recently as the 1980s, they were lucky to reach their late teens. Today, thanks to improved research and treatment, many cystic fibrosis patients can expect to live into their 30s and 40s.
However, doctors say there is still no cure for cystic fibrosis. International gene therapy research has raised hopes that a cure will be found but Ramsay says success is still some way off. A number of drugs have enjoyed some success but they are generally suitable only for patients with specific mutations of the disease. Some specialists say the best hope for long-term survival is a double-lung transplant. The procedure has enjoyed some success in SA but is very expensive.
Cystic fibrosis is passed on to sufferers from parents, both of whom must carry the defective gene. Carriers are generally unaware of their status. According to specialist cystic fibrosis doctors Professor Mervyn Mer and Cathy Baird, about 4% of white South Africans are carriers, 2% of coloureds and 1% of blacks. Only when two carriers procreate is full-blown cystic fibrosis passed on. There is a one in four chance of their children being infected.
In an article in the SA Respiratory Journal, Mer and Baird write that the presence of cystic fibrosis is far greater than generally recognised. "It translates into an incidence of cystic fibrosis in every 2 800 white children, one in every 10 000 coloured babies and at least one in every 32 000 black babies born in SA." Another study, however, suggests one in 4 624 black babies could suffer from cystic fibrosis.
Even when infected, sufferers do not automatically display standard symptoms. In some patients, the disease becomes evident soon after birth; with others it takes some years. Unnoticed, complications may include diabetes, chronic sinusitis, osteoporosis, abnormal liver function and even male infertility, says Mer.
The problem in SA is that cystic fibrosis is a little-known disease. In countries like the UK, Australia and the US, awareness and corporate sponsorship are huge, raising millions of dollars for research every year. For some multinationals, cystic fibrosis is their flagship charity. International performers like Celine Dion lend their name to awareness of the disease. Fraser, the two-year-old son of British prime minister Gordon Brown, suffers from cystic fibrosis.
In SA, by contrast, "we are severely challenged in critical mass regarding expertise and finances", says Ramsay. "There are so many things to study here in SA that it's difficult to pursue every research direction."
One reason is undoubtedly that it is seen as a white disease. "That idea has been debunked by scientists but the impression persists among many in the public," says Ramsay. "It's a disease that occurs in every shade of our rainbow nation."
Baird says her interaction with doctors and clinics confirms the prevalence of cystic fibrosis in black communities is higher than previously suspected. Mer says: "There are hundreds, possibly thousands, of black people out there unaware they could have cystic fibrosis."
The sooner the disease is identified, the better the sufferer's quality of life may be. "The individual's health and life expectancy is strongly correlated with whether a diagnosis is made, when it is made and the clinical management and treatment following diagnosis," says Ramsay. "For this reason it is vital that an accurate diagnosis is made as early as possible and that appropriate treatment is initiated and sustained."
Excessively salty skin is a tell-tale sign of cystic fibrosis. Traditional folklore in parts of northern Europe tells of mothers licking newborn babies' foreheads to gauge their chances of survival, says Baird - suggesting forms of the disease have been around for centuries. Ramsay says there are even biblical references to the practice.
Baird says the "gold standard" in detecting cystic fibrosis is a simple sweat test, which is inexpensive and non-invasive. The problem, says Ramsay, is that most rural clinics and their staff lack expertise and facilities.
"Developing countries are challenged on several fronts with regard to diagnostic testing," she says. "Populations tend to be spread sparsely over large geographic distances and the health and laboratory infrastructures tend to be poor. The sweat test is often not available. When it is, it is inadequately performed by staff who lack the appropriate education and skills. This affects both sweat collection and the quality of the biochemical testing. To perform DNA analysis requires laboratories with sophisticated equipment and scientists with the knowledge and skill to perform and interpret the tests."
New drugs, improved treatment and intensive physiotherapy all help combat the effects of cystic fibrosis. But for SA sufferers, as in the rest of the world, living with the disease means regular hospital stays, gradually reduced lung function and the awareness that life is likely to be shorter than for most people. In SA, it is also a lonely disease. Lack of public awareness means sufferers get little understanding beyond their immediate families.
Nevertheless, there are many examples of sufferers living lives to the full. Around the world, cystic fibrosis sufferers have excelled in all kinds of endeavours, including business, the arts and even sport. In SA, Paul Dolman, a cystic fibrosis patient with 40% lung capacity, is a regular Comrades Marathon finisher and motivational speaker. Others find different ways to beat the odds, such as climbing Mount Kilimanjaro.
Mer says: "There are some extraordinary people out there living with cystic fibrosis. They recognise that, in the long term, they are unlikely to beat the disease, but at the same time, they are not willing to let it beat them."

FDA Approves Pancreatic Enzyme Replacement Product for Marketing in United States

Friday, May 08, 2009 - Creon designed to help those with cystic fibrosis, others with exocrine pancreatic insufficiency

Washington, D.C. - infoZine - The U.S. Food and Drug Administration announced that it has approved Creon (pancrelipase), a pancreatic enzyme replacement product designed to help patients with cystic fibrosis and others with exocrine pancreatic insufficiency (EPI) digest and absorb nutrients from foods. Creon is the first FDA-approved delayed-release pancreatic enzyme replacement product to be marketed in the United States as a result of the agency’s unapproved drugs initiative.Creon, which contains a mixture of digestive enzymes extracted from the pancreas of pigs, helps patients lacking the enzymes needed to digest fats, proteins and sugars from food. Creon is approved for use in pediatric and adult patients.The FDA had required the manufacturer of Creon to submit, and the agency has approved, a Risk Evaluation and Mitigation Strategy (REMS), which includes a Medication Guide, to advise patients on risks associated with high doses of Creon, and the theroretical risk of transmission of viral disease from pigs to patients. A rare bowel disorder, called fibrosing colonopathy, can result from a patient’s high-dose use of Creon. While this condition is serious and may require surgery, a patients’ chances of having this condition may be reduced through their adherence to dosing instructions in the labeling. The risks of a rare bowel disorder and viral transmission described in the Medication Guide are considered to be risks related to all porcine (pig)-derived pancreatic enzyme products, including Creon.Instructions for dosing based on weight and age should be followed carefully. Creon may be sprinkled on food. Because Creon is a delayed-release drug, patients should never crush or chew the capsule as this would cause an early release of the enzymes and a reduction in enzyme activity.“The approval of Creon will allow patients to have access to an approved pancreatic enzyme replacement product that meets FDA standards for effectiveness, safety, and manufacturing consistency,” said Donna Griebel, M.D., director, Division of Gastroenterology Products within FDA’s Center for Drug Evaluation and Research (CDER).The FDA’s Office of Compliance and Office of New Drugs within CDER worked with Creon’s manufacturer, Solvay Pharmaceuticals, through the agency’s unapproved drugs initiative to help the company come into compliance with federal laws by obtaining FDA approval. The agency continues to encourage the manufacturers of all other unapproved pancreatic enzyme products (PEPs) to work with the agency to obtain market approval. All PEPs must obtain FDA approval by April 28, 2010, or be removed from the marketplace.“Like other medically necessary drugs, the FDA is exercising its enforcement discretion while it works with the manufacturer toward gaining approval of these drugs,” said Deborah Autor, director, Office of Compliance, CDER. “FDA approval is critical, and the manufacturers of these products have a responsibility to the American public to ensure that patients have drugs that meet our standards of safety, effectiveness, quality, and labeling.”People who are allergic to pork and pork products, suffer from gout or kidney disease, have difficulty swallowing, are pregnant or who plan to become pregnant, or are breastfeeding, should discuss the use of Creon with their health care professional. Common side effects of Creon include flatulence (gassiness), abdominal pain, headache, and dizziness.Creon and other pancreatic enzyme products are made from pancreatic organs of pigs used for food. There is a theoretical risk of contracting a viral infection from pig-derived medicines, but no human illness has been reported.Health care professionals and consumers may report serious adverse events (side effects) or product quality problems with the use of this product to the FDA's MedWatch Adverse Event Reporting program either online, by regular mail, fax or phone. Related linkwww.fda.gov/MedWatch/report.htm

THANK YOU FROM FAMILY

We received the following thank you note from a patient where we helped pay for them to be able to go home on IV's instead of staying in the hospital.

Dear Reaching Out:
Thank you Reaching Out Foundation for making it possible for me to go home on IV's after a long two weeks in the hospital. I battle with insurance so much for coverage on things I need for CF. In my time of need Reaching Out was there for me. Thank you to such a wonderful program and all the special people that donate money to help CF patients and families.
Thanks again, a 34 year old with CF

Swine Flu

Swine Flu and Cystic Fibrosis
What is influenza?
What is swine flu?
What are the signs and symptoms of swine flu in people?
How does swine flu spread?
Can I get swine flu from eating pork?
Can I get swine flu from taking pancreatic enzymes?
How can I avoid swine flu and other germs?
What should I do if I think I or my child has the flu?
My doctor has prescribed Tamiflu®, but I can’t get it locally. What can I do?
Is the CF Foundation monitoring the swine flu outbreak?
What is influenza?
Influenza (the flu) is an illness caused by a virus. It usually happens in the fall and winter but people can get the flu at other times of the year. The flu is easily spread by direct contact, coughing, sneezing, and when an infected person touches a surface that others then use, like doorknobs and railings. Read this fact sheet to learn more about the flu and ways to avoid getting it.
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What is swine flu?
Swine Influenza (swine flu) is a respiratory disease of pigs caused by type A influenza viruses, which can cause regular outbreaks in pigs. People do not normally get swine flu, but human infections can and do happen. Like seasonal flu, swine flu may cause a worsening of chronic medical conditions, like CF.
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What are the signs and symptoms of swine flu in people?
The symptoms of swine flu in people are similar to the symptoms of regular human flu and include:
fever and chills,
cough,
sore throat,
body aches, headache and
fatigue.
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How does swine flu spread?
Spread of the swine influenza A (H1N1) virus is thought to be happening in the same way that seasonal flu spreads. Flu viruses are spread mainly from person to person when someone with influenza coughs or sneezes. Sometimes a person may become infected with the flu by touching something that has flu viruses on it and then touching their mouth or nose.
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Can I get swine flu from eating pork?
No. Swine influenza viruses are not transmitted by food. You can not get swine flu from eating pork or pork products. Eating properly handled and cooked pork and pork products is safe. Cooking pork to an internal temperature of 160°F kills the swine flu virus as it does other bacteria and viruses.
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Can I get swine flu from taking pancreatic enzymes?
No, you cannot get swine flu from pancreatic enzymes. The virus that causes swine flu is destroyed in the manufacturing process used to make enzymes.
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How can I avoid swine flu and other germs?
There are everyday actions people can take to stay healthy.
Clean your hands with alcohol-based hand gel or soap and water.
Use a tissue when coughing or sneezing, throw it away, then clean your hands.
Keep at least three feet away from others who appear ill or are coughing.
Avoid touching your eyes, nose or mouth since germs spread that way.
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What should I do if I think I or my child has the flu?
If you or your child has CF and you think you or they may also have the flu, call your doctor. If you get sick, Centers for Disease Control and Prevention (CDC) recommends that you stay home from work or school and limit contact with others to keep from infecting them. If you have swine flu your doctor may prescribe an antiviral drug like Tamiflu® that can modify the severity of your illness.
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My doctor has prescribed Tamiflu®, but I can’t get it locally. What can I do?
CF Services Pharmacy, Inc. has Tamiflu® available for people with CF. You can contact CF Services at (800) 541-4959.
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Is the CF Foundation monitoring the swine flu outbreak?
The Foundation is closely monitoring the evolving swine flu outbreak and will update this site with more information and recommendations as needed.
You can learn more about the swine flu and how to avoid germs from:
The CDC Web site,
The Foundation’s Influenza fact sheet and Respiratory: What You Should Know About Germs, and
Watching the Web cast How to Avoid Germs in CF.
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SWINE FLU

No cases of swine flu have been reported in Georgia as of 4/27/09.

At Children’s Healthcare of Atlanta, we are following the Centers for Disease Control and Prevention (CDC) recommendations for monitoring our patients. You may see more patients and staff members wearing masks as an extra precaution during your visit.

Below are some frequently asked questions about swine flu. Please ask a Children’s clinician or visit www.cdc.gov/swineflu for more information.

What is swine flu?
Swine flu is a respiratory disease of pigs caused by a type of flu virus. People do not normally get swine flu, but human infections can happen. The influenza is spread by coughing, sneezing and unclean hands.

What can you do to protect yourself?
Limit family members and friends joining you during your visit to the hospital or neighborhood location.
Tell a Children’s staff member if you have visited Mexico or have had contact with a Mexico traveler in the last seven days.
If you or your child has a fever and cough or sore throat, wear a mask-available at the desk or from your nurse.
If you are not in the hospital, cover your nose and mouth with a tissue when you cough or sneeze.
Clean your hands after coughing or sneezing. Wash with soap and water, or use alcohol-based hand cleaner.
Avoid touching your eyes, nose and mouth.

What are the symptoms of swine flu in humans?The symptoms of swine flu in people are similar to the symptoms of seasonal flu and include fever, lethargy, lack of appetite and coughing. Some people with swine flu also have reported runny nose, sore throat, nausea, vomiting and diarrhea.

Is the swine flu treatable?
There is no vaccine to protect humans against swine flu. There are two antiviral drugs that may be used for the treatment of swine flu: Oseltamivir and Zanamivir.

Is it safe to cook and eat pork and pork products?
Yes. It is safe to eat properly handled and cooked pork and pork products. Swine flu viruses are not spread by food. You cannot get swine flu from eating pork or pork products.

Susan Burroughs Wins Inspire Award

At the ING Marathon in Atlanta, team 65 Roses surprised me with the Inspiration Award. What an honor! The trophy says: "

Miles for Cystic Fibrosis Inspire Award 2009
Presented to:
Susan Burroughs
Founder of the Cystic Fibrosis-Reaching Out Foundation
Courageous, Long-Term Lung Transplant Survivor
Champion of People with Cystic Fibrosis
Atlanta, Georgia
March 27, 2009

DAD runs to help baby daughter

Thursday, March 26, 2009 Torry Losch will run in the ING Georgia Marathon on Sunday to raise money for the Cystic Fibrosis- Reaching Out Foundation and Cystic Fibrosis Foundation. Losch is running in honor of his 5-month-old daughter, Torianna, who was diagnosed with the disease shortly after she was born.
Special PhotoTorry Losch trains for the marathon on the golf trail in Covington Place subdivision. He ran his first marathon two years ago in Las Vegas, but this time, it’s personal: Losch is running to raise money to find a cure for cystic fibrosis, a disease that affects his 5-month-old daughter.
At a glance
Cystic fibrosis is a genetic disease. People inherit it from their parents. To inherit cystic fibrosis, a person must inherit two copies of the defective CF gene - one copy from each parent. If both parents are carriers of the CF gene, their child will have a 25 percent chance of inheriting both defective copies and having cystic fibrosis; a 50 percent chance of inheriting one defective copy and being a carrier; and a 25 percent chance of not having CF or carrying the gene.

COVINGTON - Kendra Losch was in her first trimester of pregnancy when she learned she is a carrier for a rare gene that causes cystic fibrosis. Testing on her husband, Torry, revealed he is a carrier, too.That meant their child had a 25 percent chance of inheriting both genes and having the disease.Electing not to have amniocentesis to find out for sure due to the high miscarriage rate that accompanies the procedure, the couple had to wait until their baby girl, Torianna, was three weeks old to learn that she did, in fact, have the disease.That was in October. Now 5 months old, Torianna has trouble gaining weight and digesting food and has had numerous colds that easily turn into infections.She has to take medication before every feeding to help her absorb nutrients and breathing treatments every day to rid her lungs of excessive mucus.Watching their baby deal with a fatal disease is something the Losches never imagined they'd have to face."No one in our family has ever had the disease, so we had no idea we were carriers," Kendra Losch said.Cystic fibrosis is an inherited, chronic disease that affects the lungs and digestive system. It is caused by a defective gene that causes the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening infections, obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food."When my husband and I found out that our daughter had this disease, we were emotionally devastated. We felt such an overwhelming feeling of helplessness, and we knew that no matter what we did, we could not make this disease go away," Losch said. During the family's first visit to the Children's Cystic Fibrosis Center in Atlanta, they saw a flier advertising the ING Georgia Marathon, and a team called 65 Roses that would be running to raise money for the Cystic Fibrosis Foundation."Torry looked at me and said, 'This is what I can do for Torianna,'" Losch said.Torry Losch went home and registered for the marathon right away. The big day is this Sunday, where he and about 100 other runners with 65 Roses will take to the streets of Atlanta in hopes of making tomorrow brighter for all who suffer from the rare disease.The marathon is open to anyone and is not specifically intended to raise money for any particular cause. But 65 Roses team members are asking for donations from friends, family and the general public, with 100 percent of proceeds donated to the Cystic Fibrosis Foundation and the Cystic Fibrosis Reaching Out Foundation to fund research for a cure and treatments as well as help patients purchase medication.Incidentally, the team takes its name from a 4-year-old boy who couldn't pronounce the name of his illness - Cystic Fibrosis - and instead called it "65 roses." That was in 1965, and since then, the Cystic Fibrosis Foundation has affectionately used the name in its fundraising efforts.About 30,000 people in the country and approximately 800 in Georgia have cystic fibrosis. Torianna is the only sufferer that has been identified in Newton County by the Cystic Fibrosis Foundation.The disease is so rare, it often doesn't get as much publicity as other illnesses, Losch said, adding that she hopes the marathon will raise awareness as well as money.Great strides have been made in treatment even during the last 15 years. In the early '90s, the median projected life span for sufferers was 17 years. Now, it's almost 37 years. In 1955, children with the disease weren't expected to live to attend elementary school.Just three years ago, when Losch gave birth to her first daughter, who does not have the disease, newborns were not tested for the disease in Georgia, she said.It's her hope that more advances will be made so that Torianna will live to see the day a cure is discovered."When it's your child, you want her to be healthy and have a long life and do things other people get to do," she said.As she gets older, Torianna will develop a persistent cough and will have to continue with medication and the breathing treatments and subsist on a high-protein, high-fat diet to get proper nutrition."This will be a disease she'll have to live with the rest of her life. She'll have to take good care of herself," Losch said.And one day, Losch hopes, Torianna can live free of the bondage of the disease."Today cystic fibrosis is an incurable disease but through donations, we can help fund research to find a cure so that one day CF will stand for 'cure found,'" she said. To make a donation to team 65 Roses, visit http://www.milesforcysticfibrosis.org/ and click on the Atlanta link.

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- ATLANTA

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 ratmeyerfleming@yahoo.com or 770-716-2639

Sponsored by the CF Family Advisory Council

DREW'S VIEWS

May 31, 1988: The day I was diagnosed with cystic fibrosis. Ironically, on this same exact day, one of my cousins was in the hospital having a portion of her liver removed due to cancer. What a coincidence that the two of us were simultaneously fighting similar, yet completely different, battles. Unfortunately, my cousin’s battle with cancer ended shortly after my diagnosis.
This story is symbolic of my life with cystic fibrosis. As my parents were learning this critical news about their two-year-old daughter, they knew my cousin was fighting a tougher battle. Therefore, from the moment I was diagnosed, self-pity was not a dominant theme in our lives. Rather than letting CF be a decision-maker, we decided to fight CF.
There are two ways of living with a chronic illness like CF – 1) allow the illness to define who you are, or 2) define yourself as a person, while CF is simply an attribute. Thankfully, I chose the second option and let my own life goals take precedence over the fact that I have CF. If CF were my primary driver, it would be tough to accomplish as much as I have.
It’s very easy to use CF as an excuse to develop a defeatist mindset, but that’s not going to get us anywhere. Yes, CF can be a comfortable and “legitimate” reason to forego great opportunities. However, do you want to spend your entire life waiting in the wings because you have a good excuse to be cautious?
Sometimes we’d rather dwell on the illness than live our life. We’ve all probably been there at some point, but the mental fight is just as important as the physical battle. Here is a quotation by Mary Kay Ash that I love: “Aerodynamically, the bumble bee shouldn’t be able to fly, but the bumble bee doesn’t know it so it goes on flying anyway.”
If you’re reading this, you’re obviously not as unaware as the bumble bee. However, I’m sure we could all benefit from the bumble bee’s perspective on life. Buzzzz!
Until Next Time,
Drew
drewdotson@gmail.com

IF YOU CAN"T MAKE IT TO EMORY FOR FAMILY DAY...

This year you can join us on the web.

To join us, your computer must have the latest version of Real Player
(which is available free at www.real.com)


The link for the webcast will not be active until February 7, but it is

http://realaudio.service.emory.edu/ramgen/broadcast/som/somb/emory_cf_2-7-09.rm


You will be able to call in with questions and comments – the phone number for this will be announced
during the meeting.