On this page you will find:

1.) The Cystic Fibrosis Story

2.) Memorials to those that have been released from their battle with Cystic Fibrosis

3.) Important legislation that has just been passed in the Senate, that recognizes National CF Awareness Week!!

4.) Pictures of Vincent, 4 with CF, after his surgery to implant a Mic-Key G-button and a step by step pictorial of replacing the Mic-Key G-button at home.

5.) The latest Cystic Fibrosis information and updates on progress toward a cure!

6.) See Justin Heath's and Rita Allen's Daughter! Rita has CF.... (cfbratt)

7.) Please remember to sign the guestbook at the bottom!
Thank you!

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My Son and I both have Cystic Fibrosis - But, Cystic Fibrosis doesn't have us!!

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IN HONOR OF AMY

THE MENTION OF HER NAME

Author unknown

The mention of her name,
May bring tears to my eyes,
But it never fails to bring Music to my ears. If you are really my friend,
let me hear the beautiful music of her name, It soothes my broken heart and sings to my soul.

This was sent to me by Elaine, (Joynmyhrt) Amy's mother,
on March 31, 1999
It was Amy's birthday.
May God Bless her and keep her safe!
Thank you so much Elaine.
You have helped so many of us!

I received the following poem in my Cystic-L mail. It is written by Andy Lipman, in my opinion, a very gifted writer in touching the heart. More than ever before, Andy's poem makes me believe that it is so important to have a positive attitude, and to try to win against this terrible disease!

Your Dream

A dream is something so hard to find,
It takes hard work and lots of time.
You do your best and mustn't quit,
you have to stand, you mustn't sit.
for as tough as all this must seem,
it's all in order to reach your dream.

When I was young, the books I read,
Told me by 25, I'd be dead.
My classmates told me much the same,
it's this damn disease I'd have to blame.
so everyday I blew off steam,
I would never ever reach my dream.

My only dream was to be the best,
a young boy with CF, you must jest.
I wanted to be the one when I walked on the field,
the opponents were scared, my CF was healed.
But then I'd have to show my team,
that I'd be the best, I'd reach my dream.

As I got older, I began to cry,
CF was going to make me die.
All I wanted was a chance to live,
that's all I wanted God to give.
but as much as I wanted to finally beam,
I didn't believe I could reach my dream.

As I grew older, I began to work,
I realized having CF was really a perk,
it made me tough and do my best,
I didn't care if there was pain in my chest.
For all I wanted was a chance to redeem,
the only way was to reach my dream.

This past year, I had my best softball season ever,
when people told me "Take a break", I said "Never!"
I had a mission to prove to them I was the best,
a boy with CF, who would have guessed,
I just wanted to be the best on my team,
all I had left was to accomplish my dream.

Following that season, my team had a vote,
and pardon me if I now want to gloat,
I was voted the player of the year,
I couldn't help but shed some tears.

I'd done years ago what they said couldn't be done,
I'd reached my dream, I was now number one.

So if you ever have a choice and the options are down to two,
between giving in a just a little or working till you're blue,
let your heart take over and for once ignore your brain,
because doing your very best far outweighs the pain,
because you only get once chance, at least that's how it seems,
to accomplish something rare, that something is your dream.

By: Andy Lipman - I will never give up!

I just want to thank Andy Lipman with all of my heart.
You are the perfect example of a winner!
Again, Andy, I thank you for allowing me to post your wonderful poem on my page!

In Loving Memory of...

Letitia Tarske

Another one of God's perfect Angels,
has gone home.
Spread your wings and soar with the Angels, precious one!

The following is one of Letitia's favorite poems on just how important friendship is.....

I Need You Now

My friend, I need you now-

Please take me by the hand.

Stand by me in my hour of need,

Take time to understand.

Take my hand, dear friend,

And lead me from this place.

Chase away my doubts and fears,

Wipe the tears from off my face.

Friend, I cannot stand alone.

I need your hand to hold,

The warmth of your gentle touch

In my world that's grown so cold.

Please be a friend to me

And hold me day by day.

Because with your loving hand in mine,

I know we'll find the way.

By Becky Tucker,

From Chicken Soup for the Teenage Soul II

Copyright 1998 by Jack Canfield, Mark Victor

Hansen, Kimberly Kirberger

The song is so true.....

....I could have missed the pain, but I'd have had to miss...The Dance....

I wouldn't miss all this love, laughter, and joy for the world. No one can tell the future, Let's live everyday, celebrate the life we have, the love that we share, and the memories that we will always have.

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Step 4 Cont.

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Step 9

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Step 11 cont.

Step 12

This is Vincent now, almost 6 months after the placement of his Mic-Key G-Tube. As you can see, he is a very happy little boy! He got to go to his brother's 1st grade class and have his pictures done wtih them!
We have only had one scare, when he put his feet up on his sister's bed, (bunk beds) and caught his tubing for the g-tube and yanked the whole thing out! Now I have 3 Gastronomy kits here at home in case it ever happens again. I will change it myself, every 2 months!

See Rita Allen's (CFBRATT)
Daughter, Samantha!
Just click on this and go!

BELOW ARE SOME RELEASES REGARDING CF RESEARCH:
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SafetyAlerts October 20, 1999

Marsam Pharmaceuticals, Inc. Cefazolin Sodium,
USP, Rx and Ampicillin Sodium, USP, Rx Recalled

Cherry Hill, NJ (SafetyAlerts) - Marsam Pharmaceuticals, Inc. has recalled certain lots of their Cefazolin Sodium, USP, Rx and Ampicillin Sodium, USP, Rx because the product was found to have potency problems. Testing indicated that these drugs did not maintain proper potency levels and were either super-potent or sub-potent.
The drugs recalled were:
a) Cefazolin Sodium, USP, Rx, Sterile,10 grams, 100 mL vial;
b) Cefazolin Sodium, USP, Rx, Sterile,1 gram, 100 vial,
c) Ampicillin Sodium, USP, Rx, Sterile, in 10g, 100 mL vial.
The 10 gram Cefazolin (a) affected by this recall bear the codes of Lot# 9901006 (Control #9M02727) EXP 12/2000 - NDC 0209-1100-52.
The 1 gram Cefazolin (b) bear the codes Lot # 9801005 (Control #8M92223) EXP 12/99 - NDC 0209-1000-42.
The Ampicillin (c) Lot# 9710002 (Control #7J02055) EXP 09/2000, NDC 0209-0450-52.
All products are identified on the label by the Control
Number. The firm's lot number does not appear on the label.
Over 9000 trays of the affected products were recalled and distributed nationwide.
Users with question may contact the FDA at

1-800-INFO-FDA

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Researchers say fatty acids could help treat cystic fibrosis

October 9, 1999

Web posted at: 11:07 AM EDT (1507 GMT)

WASHINGTON (Reuters) -- A fatty acid that might become available in supplement form much like fish oil could treat many of the symptoms of cystic fibrosis, researchers said Saturday.

Tests on mice show that the fatty acid, known as DHA, can correct many, if not most, of the symptoms of the incurable genetic disease, from digestive problems to the lung blockages that characterize CF.

Dr. Juan Alvarez and Dr. Steve Freedman of Beth Israel Deaconess Hospital in Boston are working with Boston-based Genzyme General Corp. to develop the fatty acid for use in humans.

Bob Beall, president and chief executive officer of the Cystic Fibrosis Foundation, said experts were so impressed with the study that they were rushing to test the idea on people.

"This discovery we are talking about today will move quickly into ... clinical trials. We will be able to start clinical trials early in 2000," he told reporters in a telephone briefing.

But Beall urged CF patients not to try to treat themselves with DHA, which is available in some health food stores.

"Don't do it. It could be dangerous," Beall said. "There are impurities in the DHA that could be harmful to

patients. We don't know the correct dosage."

Research also shows other fatty acids found in some supplements might worsen CF symptoms.

Alvarez and Freedman used mice bred to have the same genetic defect that causes cystic fibrosis in people. They found their CF mice had abnormally high levels of one fatty acid, known as arachidonic acid (AA) and abnormally low levels of another one, docosahexaenoic acid (DHA).

The imbalance was found only in the organs most affected by cystic fibrosis, including the lungs, pancreas and intestine, they told the Cystic Fibrosis Foundation's annual scientific conference in Seattle.

Cystic fibrosis is the most common fatal hereditary disease among people of European descent in the United States. It is caused by a single mutated gene.

It causes a buildup of mucus in the lungs, blockages of the intestine and disrupts the function of the pancreas. Patients die, on average, by the age of 32.

"In the pancreas, thick, tenacious secretions block the release of pancreatic enzymes that are very important in the degradation of fat. CF patients show deficiencies in fatty acids and absorption," Beall said.

Freedman said he and Alvarez decided to tackle the lipid problem by feeding their mice very high levels of DHA.

"If you give it in exceedingly high levels ... the DHA should go directly into cells that are abnormal," he said. "We gave these animals 7 days of DHA in various doses. We found as you get to a certain critical dose you could now correct this lipid abnormality."

Their pancreases and intestines both looked much more normal than untreated mice, he added.

CF mice do not spontaneously develop the lung infections that human CF patients get, so Freedman and Alvarez gave their mice pneumonia. "CF mice ... get a much more severe pneumonia," Freedman said.

"If we pre-treat our CF animals with DHA at these high doses for 7 days, we bring that lung inflammation down to normal levels. More dramatically, if you give a normal mouse DHA, nothing happens."

Now the researchers want to test real CF patients. They have taken samples from the lungs, intestines and pancreases of six CF patients and 6 healthy volunteers and find the same fatty acid imbalance in the CF patients' cells.

__________________________________
Tests Shed Light on Cystic Fibrosis

.c The Associated Press

By PEGGY ANDERSEN

SEATTLE (AP) - Tests in mice suggest a reversible fatty-acid imbalance may be the source of chronic lung inflamation, excess mucus and other symptoms of cystic fibrosis, researchers said Saturday at the 13th annual North American Cystic Fibrosis conference.

The genetic disease, which affects 30,000 American children and young adults, attacks patients' lungs with a thick mucus and most die from lung damage or infection.

The researchers - Dr. Juan Alvarez and Dr. Steven Freedman of Beth Israel Deaconess Medical Center in Boston - worked with mice genetically altered to mimic cystic fibrosis.

They found the altered mice had abnormally high levels of one fatty acid - arachidonic acid, or AA - and abnormally low levels of another - docosahexaeonic acid, or DHA. The imbalance was limited to the organs most affected by cystic fibrosis, including the lungs, pancreas and intestines.

When the altered mice were fed large doses of DHA for one week, the researchers reported, not only was that imbalance corrected - the signs of cystic fibrosis also were reversed.

Preliminary tests suggest the imbalance involving the two fatty acids also exists in people with the disease, Alvarez and Freedman said. They are studying the relationship in cystic fibrosis patients under a research agreement with Genzyme General of Cambridge, Mass.

``Although a number of steps remain before the benefit of DHA to patients is known, this exciting research presents an entirely new strategy to correct and possibly even prevent some of the ravages of this disease,'' said Robert J. Beall, president and chief executive officer of the Cystic Fibrosis Foundation.

DHA is available as a nutritional supplement in health food stores, but the researchers and foundation officials warned patients against experimenting at home.

Clinical trials are expected to begin next year.

``They've made some tantalizing observations in an animal model,'' said Dr. Peter Durie, director of cystic fibrosis research at the Hospital for Sick Children in Toronto, where the CF gene was discovered 10 years ago.

Cystic fibrosis is the most common fatal hereditary disease among Caucasians in the United States. The median life expectancy is 32 years. Treatments to fight lung infections and improve nutrition have improved care dramatically, but they treat only symptoms.

One cystic fibrosis patient was optimistic about the research.

``I think it's very promising,'' said Suzanne Pattee, an attorney at the Washington, D.C.-based CF Foundation. As for her illness, she said, ``Obviously I'm more fortunate than many - I'm in my mid-30s.

(PROFILE (CO:Genzyme General; TS:GZSP; IG:MDS;)

AP-NY-10-09-99 2351EDT

Copyright 1999 The Associated Press.

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Rotavirus Vaccine May Be Linked To More Cases Of Bowel Disorder

September 16, 1999

BETHESDA, MD (Reuters Health) ó The Food and Drug Administration (FDA) has

received reports of 99 cases of intussusception that may be related to

Wyeth-Ayerst's RotaShield rotavirus vaccine, an FDA medical officer said

Tuesday.

The number is a huge jump from the previously noted 15 cases, reported as of

July 7.

Intussusception, where part of the bowel telescopes into an adjacent part,

most commonly occurs in infants and young children. The disorder causes bowel

obstruction, and often requires surgery.

Two of the 99 children experiencing the bowel obstruction died, said FDA's

Kathryn Carbone, one of the initial reviewers of the RotaShield data. All had

been given at least one dose of RotaShield, an oral vaccine meant to inhibit

infection with the diarrhea-causing rotavirus.

RotaShield, approved in August 1998, was hailed as a life-saver. Rotavirus

infects almost all children by age 3, and causes 500,000 physician visits and

20 deaths per year in the US. Soon after RotaShield's introduction, the FDA's

Vaccine Adverse Event Reporting System (VAERS) began receiving reports of

children who developed intussusception shortly after being vaccinated.

By July 7, the VAERS had 15 cases logged, out of an estimated 1.5 million

doses given since RotaShield's approval. The number of cases alarmed the

agency because typically, only about 5% to 10% of adverse events are

reported, said Carbone. With a minimum of 15 infants affected, that meant

that many more were having problems than would have been expected, she said.

On July 17, the Centers for Disease Control and Prevention (CDC) urged

physicians and parents to hold off on rotavirus vaccination until

investigators could determine whether RotaShield was causing intussusception.

The number of cases reported to the VAERS spiked after the CDC report, said

Carbone. All are still under investigation, so it is not clear yet whether

the two deaths or the other cases were caused by the vaccine, she said.

"This is very preliminary information," she told a gathering of the FDA's

Vaccines and Related Biological Products Advisory Committee.

In a post-marketing study conducted in infants at a health maintenance

organization, there were nine total cases of intussusception in 9,802

children, but only three were in those who received RotaShield, said Carbone.

The CDC is continuing its own case-control study, focusing on all cases of

intussusception in states that had the highest distribution of rotavirus

vaccine. The agency is expected to report preliminary data in early November.

Depending on what CDC finds, the FDA will decide what to do with RotaShield

and how future rotavirus vaccines should be evaluated, Carbone said.

The FDA is also investigating preliminary reports of intussusception that may

be related to the oral polio vaccine.

In the meantime, the Association of American Physicians and Surgeons urged

Congress on September 2 to start an inquiry into the FDA's vaccine approval

process, claiming that the RotaShield approval may indicate deeper problems

with the system.

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Batch of Asthma Inhalers Recalled

WASHINGTON -- September 14, 1999 -- A Schering-Plough Corp. subsidiary is

recalling a batch of prescription albuterol inhalers that patients use to

fight off asthma attacks, after one patient bought an inhaler that turned

out to be empty.

The problem could be lifethreatening if an asthma patient discovers an

empty inhaler in the midst of an asthma attack. So patients who have filled

a prescription since April for Warrick Pharmaceuticals’ albuterol metered

dose inhaler a generic version of the common asthma medication are urged to

check if they have the recalled inhaler.

The recalled inhalers bear the lot number 9-BBS-525, both on the box and on

the albuterol canister’s label. They were distributed to pharmacies

nationwide between late April and early May, and bear an expiration date of

August 2001.

Asthma patients who have those inhalers are urged to promptly return them

to the drugstore of purchase for a replacement.

"The use of an affected canister by an asthma patient may cause adverse

health consequences," Warrick warned in a statement.

The company believes that a temporary glitch on the assembly line that

filled the inhalers caused some to slip through without getting any drug.

Although some 190,000 canisters are being recalled, Warrick estimated that

the mechanical failure was caught soon enough that fewer than 150 canisters

will prove to be empty. Warrick said it believes most of the 150 cannisters

are already in the company’s possession.

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Aurora Biosciences Announces Drug Discovery Program Funded by the Cystic Fibrosis Foundation

SAN DIEGO, Sept. 13 /PRNewswire/ -- Aurora Biosciences Corporation (Nasdaq: ABSC) announced today that the Cystic Fibrosis Foundation ("CFF") is providing funding for a collaboration with Aurora to identify potential therapeutics to treat the defect identified as the primary cause of cystic fibrosis ("CF"). The grant is part of the Foundation's Therapeutics Development Program, which is funding efforts to discover drugs that may treat the symptoms as well as the cause of the disease.

In CF, a defective gene causes cells to produce a faulty ion channel that would normally allow chloride to exit the cell; this also interferes with the exchange of sodium. Under the agreement, Aurora will develop screening assays for the functional defect in CF in cell-based assays and will conduct high-throughput screening using its library of compounds. "In this work Aurora will deploy its proprietary ion channel technology platform which includes a patented dual fluorophore voltage sensor system, innovative cell and molecular biology and the VIPR(TM) high-throughput kinetic plate reader," commented Paul A. Negulescu, Ph.D., Aurora's senior director, cell biology. "These technologies will allow us to develop assays in cystic fibrosis cells and directly screen for chemicals that correct the cell's function." CFF will then work with Aurora to prioritize any lead compounds identified through this screening process. Once lead compounds have been selected, Aurora and CFF could expand the collaboration to cooperate on a program for further development, funded by CFF.

"The Foundation's partnership with Aurora opens exciting new doors to apply state-of-the-art technology to the discovery of novel therapies for the control and cure of cystic fibrosis," says Robert J. Beall, Ph.D., president and CEO of the Cystic Fibrosis Foundation. "This represents the dawning of a new era in the ability of cystic fibrosis scientists to accelerate the identification and development of new therapeutics. Success, of course will be measured by the ultimate benefit these compounds have for individuals battling this disease," he continues. "Aurora will increase our odds of achieving this by exponential proportions."

Cystic fibrosis is the most common fatal genetic disease in this country among Caucasians, and is caused by a defective gene that is important to cells lining the airways and the digestive tract. When defective, the CF gene creates a dangerously thick sticky mucus that leads to chronic and eventually fatal lung infections, and interferes with digestion. Although there is no cure, Foundation-supported researchers are quickly translating what they learn about the CF gene and CF cells in the laboratory into promising new treatments. See www.cff.org for more information.

Aurora combines innovative biotechnology with its novel, high-technology automation and software to provide solutions to challenges in drug discovery for the pharmaceutical and biotechnology industries. The Company's core technologies include a broad portfolio of proprietary fluorescence assay technologies; its functional genomics GenomeScreen(TM) program; and its ultra- high throughput screening system (UHTSS(TM) Platform) and subsystems to miniaturize and automate assays derived from those technologies within a computer-controlled integrated system, capable of searching through expansive libraries of compounds to identify those that might lead to new medicines. Aurora seeks to become a leader in providing services, technology and information that enhance and accelerate its customers' ability to discover new therapeutics through three main strategies: (1) providing customized drug discovery services, allowing the customer to outsource some part or all of its discovery needs, (2) developing and selling systems, instruments and technologies to augment the customer's own discovery efforts, and (3) licensing the Company's growing intellectual property portfolio. Current customers include Bristol-Myers Squibb Company, Eli Lilly and Company, Warner-Lambert, Merck & Co., Pfizer, Inc., Pharmacia & Upjohn, Inc., F.Hoffmann-LaRoche Ltd., Becton Dickinson, Cytovia, Inc. and Clontech Laboratories, Inc.

Statements in this press release that are not strictly historical are "forward-looking" statements which involve a high degree of technological and competitive risks and uncertainties that exist in the Company's operations and business environment. Such statements are only predictions and the Company's actual events or results may differ materially from those projected in such forward-looking statements. Factors that could cause or contribute to differences include risks associated with the Company's ability to develop assays for CF or to identify potential leads through the use of such assays, new and uncertain technology, dependence on patents and proprietary rights and dependence on pharmaceutical and biotechnology. These factors and others are more fully described in the Company's Annual Report on Form 10-K for the fiscal year ended December 31, 1998, and subsequent Form 10-Q's as filed with the Securities and Exchange Commission. For additional corporate information, visit the Aurora website at http://www.aurorabio.com.

UHTSS(TM) and GenomeScreen(TM) are trademarks of Aurora Biosciences Corporation.

SOURCE Aurora Biosciences Corporation
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Facts about Cystic Fibrosis

CF is a genetic disease affecting approximately 30,000 children and young adults in the United States.

CF causes the body to produce an abnormally thick, sticky mucus due to the faulty transport of sodium and chloride (salt) within cells lining organs such as the lungs and pancreas, to their outer surfaces. This abnormal mucus clogs the lungs and leads to life-threatening infections. The thick CF mucus also obstructs the pancreas, preventing enzymes from reaching the intestines to help break down and digest food.

CF has a variety of symptoms. The most common are: very salty-tasting skin; persistent coughing, wheezing or pneumonia; excessive appetite but poor weight gain; and bulky stools.The sweat test is the standard diagnostic test for cystic fibrosis. This simple, painless test measures the amount of salt in the sweat. A high level of salt indicates that a person has CF.

The treatment of CF depends upon the stage of the disease and which organs are involved. One means of treatment, chest physical therapy, requires vigorous percussion (by using cupped hands) on the back and chest to dislodge the thick mucus from the lungs. Antibiotics are also used to treat lung infections and are administered intravenously, via pills, and/or medicated vapors which are inhaled to open up clogged airways. When CF affects the digestive system, the body does not absorb enough nutrients. Therefore, people with CF may need to eat an enriched diet and take both replacement vitamins and enzymes.

CF occurs in approximately one of every 3,200 live Caucasian births (in one of every 3,900 live births of all Americans). There are about 1,000 new cases of CF diagnosed each year. Most individuals are diagnosed by the age of three; however, nearly 8 percent of all newly diagnosed cases are 18 or older. According to the CF Foundation's National Patient Registry, one half of all individuals with CF live to the age of 31; however, one half do not.

One in 31 Americans (one in 28 Caucasians) ó more than 10 million people ó is an unknowing, symptomless carrier of the defective gene.

A individual must inherit a defective copy of the CF gene ó one from each parent ó to have cystic fibrosis. Each time two carriers conceive a child, there is a 25 percent chance that the child will have CF; a 50 percent chance that the child will be a carrier; and a 25 percent chance that the child will be a non-carrier.

Progress Toward a Cure

Since the defective CF gene was discovered in 1989, the pace of CF research has greatly accelerated. In 1990, scientists successfully made copies of the normal gene, and added them to CF cells in laboratory dishes, which corrected the defective cells. The next major step was achieved in early 1993 when the first experimental gene therapy treatment was given to a patient with CF. Researchers modified a common cold virus to act as a delivery vehicle ó carrying the genes to the CF cells in the airways. Several Foundation-supported studies are underway to test new versions of the cold virus, and other cutting-edge technology, such as fat capsules (liposomes) and synthetic vectors. For more information on CF gene therapy, see Gene Therapy and CF.

New Treatments

The first new drug therapy developed exclusively for CF in 30 years was approved by the Food and Drug Administration (FDA) in 1993. In clinical trials, this mucus-thinning drug called PulmozymeÆ, reduced the number of respiratory infections and improved lung function. In 1995, a four-year Foundation-supported study showed that the drug, ibuprofen, reduced the rate of lung inflammation in children with CF ó under controlled conditions, and in high doses.

In late 1997, the FDA approved the drug TOBIô (tobramycin solution for inhalation). In clinical trials, this reformulated version of the common antibiotic improved lung function in people with CF and reduced the number of hospital stays. The benefits of TOBI are that it can be delivered in a more concentrated dose directly to the site of CF lung infections more efficiently, and that it is preservative-free. The development of TOBI should lead to a long line of other aerosolized antibiotics for people with CF.

In addition, other treatment strategies to correct the protein product of the gene are currently being tested in clinical trials. What makes these drugs so unique is that researchers appear to be treating the causes of CF, not just the symptoms.

Facts about the Foundation

The Cystic Fibrosis Foundation was established in 1955 to assure the development of the means to cure and control cystic fibrosis and to improve the quality of life for those with the disease.

The Cystic Fibrosis Foundation:

Supports and accredits more than 100 CF care centers nationwide which provide high-quality, specialized care for those with CF. These centers, located at major teaching and community hospitals, offer comprehensive diagnosis and treatment for people with CF and their families.

Provides a variety of grants to scientists to conduct CF research throughout the country: new investigator research grants; clinical research grants; research fellowships; clinical fellowships; and student traineeships.

Supports the advancement of medical science by funding its own network of 10 CF research centers at leading universities and medical schools throughout the United States. By applying state-of-the-art science to targeted research opportunities, these centers are bringing us closer to a cure. The Cystic Fibrosis Foundation was the first voluntary health agency to create and fund such a network, the Research Development Program.

Provides support for the innovative Therapeutics Development Program to stimulate the development of new therapeutics for people with CF. This program provides the infrastructure needed to expedite CF clinical trials in the early phases, and is supported by matching funds from biotechnology companies. This extensive project represents a major commitment by the CF Foundation that is unrivaled by any other voluntary health organization.

Supports a centralized laboratory dedicated to providing accurate and rapid identification of the lethal Burkholderia cepacia bacterium. Proper identification of the B. cepacia bacterium will speed up the time it takes for a physician to prescribe the best drug therapy for their patient with CF.

Supports extensive clinical trials at its care centers to test new drug therapies, including ways to fight respiratory infection, thin the CF mucus, and reduce inflammation. For the first time, CF Foundation-supported researchers are targeting the root cause of the disease, rather than the symptoms. Protein assist therapy, which is designed to repair the defective protein product of the CF gene, is a new landmark treatment strategy launched by the Foundation.

Maintains a Web site on the Internet at www.cff.org which provides a wealth of information on a variety of subjects relating to CF. Information includes updates on CF research and clinical trials, public policy issues, ways to get involved in fund-raising events, CF Services, Inc. (CF Pharmacy), and general information. For those who do not have access to the Internet, the Foundation also provides this information in the form of brochures, fact sheets and videos, free of charge.

Manages a 24-hour hot line providing up-to-date information on CF clinical trials which are recruiting volunteers. To access the hot line, call the Foundation's toll-free telephone number at

(800) FIGHT CF.

Advocates for increased funding for the National Institutes of Health, and testifies before the U.S. Congress to encourage more federal investment in basic science research. The Foundation works closely with the Congress, the Food and Drug Administration, and pharmaceutical companies to speed the development of drugs to treat cystic fibrosis.

Supports CF research, medical care, public policy and education programs with the help of more than 250,000 volunteers. These volunteers are part of the fund-raising efforts at the Foundation’s more than 65 chapters and branch offices across the country.

The Cystic Fibrosis Foundation depends upon public support to carry out its life-saving programs. The generosity of donors has enabled scientists to identify the gene that causes CF, to correct defective CF cells in laboratory dishes, and much more. Based on these successes, Foundation-supported researchers are now conducting gene therapy studies involving individuals with CF, using several unique gene delivery methods. This new gene transfer therapy technology may ultimately lead to a cure. For more information on CF gene therapy, see the fact sheet entitled, Gene Therapy and CF.

In 1997, Smart Money, the magazine of The Wall Street Journal picked the Cystic Fibrosis Foundation as one of the nation's "charities you can trust." In other words, the CF Foundation puts your money to work as efficiently as possible. The Foundation is proud to receive such recognition, and its investment will continue to pay big dividends in terms of medical advances.
-Cystic Fibrosis Foundation-
__________________________________

Gene therapy finally starting to work, doctors say

June 14, 1999

WASHINGTON, Reuters [WN]: Gene therapy, which for years

has produced disappointment after disappointment, may be

on the verge of yielding successes, scientists said on

Thursday. The scientists said they finally were

developing ways to get genes into the body so they stay

there and keep

working -- one of the biggest stumbling blocks so far.

And they also have tempered their expectations, with gene

therapy being just that -- therapy -- rather than a

hoped-for cure for many genetic diseases. "We can use it

in the treatment of cancer, inducing an immune response to

infection or cancer, the sprouting of blood vessels, all

those sorts of things, " Dr. Jim Wilson, president of the

American Society of Gene Therapy, said in an interview.

"It's like a drug delivery vehicle where the drugs are

therapeutic proteins," Wilson added. The society is

holding its annual meeting in Washington. The original

idea behind gene therapy was to replace faulty genes that

cause diseases such as cystic fibrosis, an inherited

disease caused by mutations in one gene. But attempts to

replace this gene in patients did not work well. Sometimes

their cells did not take up the gene, or it worked for

only a short time. This might have been due to the

vectors, the methods used to carry the new genes,into the

cells. Commonly used vectors include viruses known as

adenoviruses, best known for causing the common cold. But

they caused inflammation and other immune responses that

attacked the genes and shortened their useful lives. Now,

viruses known as adeno-associated viruses (AAV) are being

tested. They do not themselves cause infection but seem to

be very good at injecting the genes right where they need

to be in a cell, so that they last.

"Tested in animals it looks spectacular for stable

expression," Wilson said. "We can essentially cure disease

in animals." The genes keep expressing -- directing the

cells to produce the right proteins -- for as long as two

years in dogs and rhesus monkeys, Wilson said.

Clinical trials in human beings are just starting, and the

first results will be reported next year, Wilson said.

WARNING: Consult a trusted doctor before ANY change to your treatment.

If anyone has any information, pictures or websites that they would like me to post on this page, please send me email, and I will do my best to put it on the page for you.
Cystic Fibrosis touches so many of us.
I want this site to grow as we learn, live, grow and deal with this disease. We can make a difference in getting the information out there!

"One heart at a time"

Please feel free to use the message board to post any questions, suggestions, thoughts that you have, especially regarding Cystic Fibrosis, or anything that you would like to discuss!
Thank you! :-)

MORE INFORMATION AND LINKS COMING SOON!

Cystic-L
A support group for Cystic Fibrosis!
Click here to visit!

My First Award!

Gold Memorial Award

To The Message Board

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