Help me help others!!!! Let's work together to make CF stand for CURE FOUND!!!!!!

  • Posted by a hidden member.
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    May 05, 2008 5:33 PM GMT
    http://www.cff.org/Great_Strides/AlexanderChang

    As many of you know, i am currently growing my hair out for Locks Of Love http://www.realjock.com/gayforums/63466/

    AND as many of you know, Cystic Fibrosis has touched my life deeply.

    In a little over a month, hundreds of people will gather in Dayton Ohio’s Delco park to walk together. They will join forces to aid several thousand children and several hundred adults in the United States, and ultimately the world. These individuals are living with a fatal genetic disease known as Cystic Fibrosis.

    Many of you may ask why Cystic Fibrosis has become such a big deal to me. Over two years ago I had the distinct pleasure of meeting a woman who would go on to shape my life in a profound way. Second only to my mother, Jeri Dickey has become the most important and influential woman in my life. Emmy Award winner, dancer, choreographer, teacher, friend, mother, Jeri Dickey is also a crusader, and a person who should be canonized now, while she’s living! Jeri, is mother of four amazingly talented and brilliant children, two of which are living with Cystic Fibrosis. This is why it is so important to me. For all that Jeri has given me, I feel that I must do my part to not only give back to her, but to helping find a cure for all those living with Cystic Fibrosis.

    GREAT STRIDES is the Cystic Fibrosis Foundation's largest and most successful national fund-raising event. This year, I'm walking in the GREAT STRIDES walk at the Delcon Park walk on June 8th. Please help me meet my fund-raising goal of $1,000 by sponsoring me. Your generous gift will be used efficiently and effectively, as nearly 90 cents of every dollar of revenue raised is available for investment in vital CF programs to support research, care and education.

    http://www.cff.org/Great_Strides/AlexanderChang


    Making a donation is easy and secure! Just click the "Click to Donate" button on this page to go to make a donation that will be credited to my team. Any amount you can donate is greatly appreciated!

    http://www.cff.org/Great_Strides/AlexanderChang

    Cystic fibrosis (CF) is a devastating genetic disease that affects tens of thousands of children and young adults in the United States. Research and care supported by the Cystic Fibrosis Foundation is making a huge difference in extending the quality of life for those with CF. However, we continue to lose precious lives to CF every day. That's why your help is needed now more than ever to ensure that a cure is found sooner - rather than later. To learn more about CF and the CF Foundation, visit http://www.cff.org/Great_Strides/AlexanderChang

    Together, we can make a difference in the lives of those with CF! Thank you for supporting the mission of the CF Foundation and GREAT STRIDES!

    www.myspace.com/stepup4acure

    Thank you for taking a moment to look over this. If everyone who even glances at this post takes a moment to educate themselves on CF, i've done more than if i were able to raise a dollar for every word, in every book, in all the world!

    Thank you again!
  • Posted by a hidden member.
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    May 06, 2008 11:55 AM GMT
    Cystic fibrosis (also known as CF, mucoviscoidosis, or mucoviscidosis) is a hereditary disease that affects mainly the exocrine (mucus) glands of the lungs, liver, pancreas, and intestines, causing progressive disability due to multisystem failure.

    Thick mucus production, as well as a less competent immune system, results in frequent lung infections. Diminished secretion of pancreatic enzymes is the main cause of poor growth, fatty diarrhea and deficiency in fat-soluble vitamins. Males can be infertile due to the condition congenital bilateral absence of the vas deferens. Often, symptoms of CF appear in infancy and childhood. Meconium ileus is a typical finding in newborn babies with CF.

    There is no cure for CF, and most individuals with cystic fibrosis die young: many in their 20s and 30s from lung failure. However, with the continuous introduction of many new treatments, the life expectancy of a person with CF is increasing to ages as high as 40 or 50. Lung transplantation is often necessary as CF worsens.

    Cystic fibrosis is one of the most common life-shortening, childhood-onset inherited diseases. In the United States, 1 in 3900 children are born with CF. It is most common among Europeans and Ashkenazi Jews; one in twenty-two people of European descent are carriers of one gene for CF, making it the most common genetic disease in these populations. Ireland has the highest rate of CF carriers in the world (1 in 19).
  • HndsmKansan

    Posts: 16311

    May 06, 2008 12:05 PM GMT
    Thanks for briefing and educating us on some of the specifics of this very difficult disease. You are to be commended on your efforts.

    During my years of teaching horsemanship, I had the honor of working with several children with Cystic Fibrosis, MS and several other related conditions.
    I think whatever we can do to help is very important.

    Please give us updates on the walk and the efforts with the "Locks of Love". I've been impressed with some of those who have given.
  • HndsmKansan

    Posts: 16311

    May 06, 2008 12:48 PM GMT
    I made a donation for this cause... I encourage others here to consider the same. StripperRocco is putting himself out to assist others in need. Lets show him our support.
  • Posted by a hidden member.
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    May 06, 2008 1:27 PM GMT
    Well I shouldn't post. Because I can't help. Sorry icon_redface.gif Wish I could though. I'm asthmatic and know just how horrible it is to be unable to breath.
  • Posted by a hidden member.
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    May 06, 2008 2:01 PM GMT
    Sedative saidWell I shouldn't post. Because I can't help. Sorry icon_redface.gif Wish I could though. I'm asthmatic and know just how horrible it is to be unable to breath.


    That is complete BS!!!!!!!

    In the grand scheme of things, the big picture, it's not about the money! Though every cent raised helps, getting the word out there, educating people, and allowing them to ask questions that challenge even the most knowledgable person on the topic of CF makes a far greater impact on familes world wide!

    Say someone you know, maybe your best friend, has a kid who tests positive for CF and you happened to have taken a moment to educate yourself about the condition. You can be there for that person in a capacity that others might not be able to be.

    Through Jeri I have learned quite a bit of the inner workings of being a parent who knows that you will out live your child. Through her kids i have seen what it's like to have to take enzyme supplements with every meal, what it's like to sit through percussive and breathing treatments at least twice a day. I've learned enough that her kids have been left in may care. And you know what, i've learned enough to know that just because someone has a fatal condition, doesn't mean they don't LIVE. ESPECIALLY kids! They grow up with it, so it's part of their lives, always has been. They don't know anything different, and in a way that's a beautiful thing.

    So what if you can't donate, take a moment to visit the site, or wikipedia, or the Boomer Esiason Foundation, and learn about it. Then spread what you've learned. You'll be surprised how many lives CF has touched.
  • HereNBoston

    Posts: 221

    May 06, 2008 3:12 PM GMT
    This is definitely a great cause. I work with lung transplant patients, and these guys are so great. They sometimes live their whole lives not being able to really even take a casual stroll without feeling short of breath and on oxygen tanks... and then they get a new lease on life when they get a fresh pair of lungs. unfortunately, theres a whole other set of complications post-transplant, and even after they have to take their enzymes. So thats why the research is so important to find a cure or a way of reactivating the defective gene.
  • Posted by a hidden member.
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    May 07, 2008 9:27 AM GMT
    StripperRocco said

    So what if you can't donate, take a moment to visit the site, or wikipedia, or the Boomer Esiason Foundation, and learn about it. Then spread what you've learned. You'll be surprised how many lives CF has touched.


    I have. Remember the first time I've emailed you? icon_redface.gif Heh. Thanks

    And bumping this thread back up.
  • Posted by a hidden member.
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    May 09, 2008 8:02 PM GMT
    Taken from www.cff.org

    What is cystic fibrosis?

    Cystic fibrosis is a life-threatening disease that causes mucus to build up and clog some of the organs in the body, particularly in the lungs and pancreas. When mucus clogs the lungs, it can make breathing very difficult. The thick mucus also causes bacteria (or germs) to get stuck in the airways, which causes inflammation (or swelling) and infections that leads to lung damage.

    Mucus also can block the digestive tract and pancreas. The mucus stops digestive enzymes from getting to the intestines. The body needs these enzymes to break down food, which provides important nutrients to help us grow and stay healthy. People with cystic fibrosis often need to replace these enzymes with capsules they take with their meals and snacks to help digest the food and get the proper nutrition.



    How do people get cystic fibrosis?

    Cystic fibrosis is a genetic disease. That means people inherit it from their parents through genes (or DNA), which also determine a lot of other characteristics including height, hair color and eye color. Genes, found in the nucleus of all the body's cells, control cell function by serving as the blueprint for the production of proteins.

    The defective gene that is responsible for causing cystic fibrosis is on chromosome 7. To have 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 (i.e., they each have one copy of the defective gene), their child will have a 25% chance of inheriting both defective copies and having cystic fibrosis, a 50% chance of inheriting one defective copy and being a carrier, and a 25% chance of not having CF or carrying the gene.


    Who gets cystic fibrosis?

    Approximately 30,000 people in the United States have cystic fibrosis. An additional ten million more—or about one in every 31 Americans—are carriers of the defective CF gene, but do not have the disease. The disease is most common in Caucasians, but it can affect all races.

    The severity of cystic fibrosis symptoms is different from person to person. The most common symptoms are:

    Very salty-tasting skin
    Persistent coughing, at times with phlegm
    Frequent lung infections, like pneumonia or bronchitis
    Wheezing or shortness of breath
    Poor growth/weight gain in spite of a good appetite
    Frequent greasy, bulky stools or difficulty in bowel movements
    Small, fleshy growths in the nose called nasal polyps
    Sometimes people are told that they have asthma or chronic bronchitis when they really have cystic fibrosis. New research shows that the severity of CF symptoms is partly based on the types of CF gene mutations (defects). Scientists have found more than 1,500 different mutations of the CF gene.


    How is CF diagnosed?

    Most people are diagnosed with CF at birth or before the age of 2. A doctor who sees the symptoms will order either a sweat test or a genetic test to confirm the diagnosis.

    A sweat test is the most common test used to diagnose cystic fibrosis. A small electrode is placed on the skin (usually on the arm) to stimulate the sweat glands. Sweat is then collected and the amount of chloride, a component of salt in the sweat, is measured. A high level of chloride—a score of more than 60 mmol/L (a measure of concentration)—means that the person has cystic fibrosis. Scores between 40 mmol/L and 60 mmol/L are considered to be on the borderline and need to be looked at on a case-by-case basis. Scores of less than 40 mmol/L are considered negative for CF. The best place to receive a reliable sweat test is at a Cystic Fibrosis Foundation-accredited care center.

    In a genetic test, a blood sample or cells from the inside of the cheek is taken and sent to a laboratory to see if any of the various mutations of the CF gene are found. A genetic test is often used if the results from a sweat test are unclear.



    How does CF affect the lungs?


    Scientists have many different ideas about what goes wrong in the lungs of a person with cystic fibrosis, but it all begins with defective CF genes. Normally, the healthy CF gene makes a protein—known as CFTR (Cystic Fibrosis conductance Transmembrane Regulator)—that is found in the cells that line various organs, like the lungs and the pancreas. This protein controls the movement of electrically charged particles, like chloride and sodium (components of salt) in and out of these cells. When the protein is defective, as in cystic fibrosis, the salt balance in the body is disturbed. Because there is too little salt and water on the outside of the cells, the thin layer of mucus that helps keep the lungs free of germs becomes very thick and difficult to move. And because it is so hard to cough out, this mucus will clog the airways and lead to infections that damage lungs.


    Is cystic fibrosis fatal?

    Currently, there is no cure for cystic fibrosis. However, specialized medical care, aggressive drug treatments, and therapies, along with proper CF nutrition, can lengthen and improve the quality of life for those with CF.

    The best way for people with cystic fibrosis to fight their disease is to work with their medical caregivers at a CF Foundation-accredited care center. The care center partners with people who have CF to help keep them in the best health possible.



    What is a typical day for someone with CF?

    Because the severity of CF differs widely from person to person, and CF lung infections flare up from time to time, there may not be a “typical” day. However, each day most people with CF:

    Take pancreatic enzyme supplement capsules with every meal and most snacks (even babies who are breastfeeding may need to take enzymes).
    Take multi-vitamins.
    Do some form of airway clearance at least once and sometimes up to four or more times a day.
    Take aerosolized medicines. These are liquid medications that are made into a mist or aerosol and then inhaled through a nebulizer.
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    What is the life expectancy for people who have CF (in the United States)?

    There is no way to accurately predict how long people with cystic fibrosis will live, as many different factors may affect a person’s health. Severity of disease and time of diagnosis are two such factors. Many people have a mild case of CF, while others can have moderate or severe cases. In addition, some adults with cystic fibrosis have only recently begun to use new treatments, while an infant diagnosed at birth will have the advantages of starting specialized treatments that were not available even a decade ago.

    Using data from the CF Foundation Patient Registry, which is gathered from patients treated at CF Foundation-accredited care centers, we do know that more than 40 percent of all people with CF in this country are 18 years or older. In addition, we have calculated the predicted median age of survival. This number is based on a statistical method of using life table analyses developed by insurance companies to calculate trends in survival.

    In 2005, the predicted median age of survival rose to 36.5 years, up from 32 in 2000. The predicted median age of survival is the age by which half of the current CF Patient Registry population would be expected to survive, given the ages of the patients in the registry and the distribution of deaths in 2005.

    The steady rise of the median predicted age of survival suggests how improvements in treatment are advancing the lives for those with CF. In 1955, children with CF were not expected to live even to first grade. Today, thanks to continued Foundation-supported research and specialized care, an i
  • dhinkansas

    Posts: 764

    May 09, 2008 8:45 PM GMT
    I just made a small contribution because it's a good cause. Anything to help others is certainly worth it. Plus, Rocco is hot.
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    May 12, 2008 1:50 PM GMT
    To everyone who has donated... THANK YOU SO MUCH!!!!!!

    To everyone else there is still time!!!!!!

    To everyone who has taken a moment to learn about CF and possibly even discuss it with others, thank you! Thank you! Thank you!

    Blessings and light!!! ttp://www.cff.org/Great_Strides/AlexanderChang

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    May 15, 2008 12:10 PM GMT
    There is still time to help me make CF stand for Cure Found. The walk is June 8th, in Dayton Ohio.

    http://www.cff.org/Great_Strides/AlexanderChang

    Research Milestones

    1938 First comprehensive medical report of cystic fibrosis (CF) being a separate disease by Dr. Dorothy Andersen.

    1953 During a heat wave in New York City, Dr. Paul di Sant’Agnese and others connect the extra loss of salt by people with CF with the basic defect in the disease.

    1955 The Cystic Fibrosis Foundation became incorporated as the National CF Research Foundation and awards the first research grants to Drs. di Sant’Agnese, Andersen and Shwachman.

    1961 The Cystic Fibrosis Foundation-accredited care center program begins with two centers being established.

    1962 Predicted median survival increases to about 10 years.

    1962 A total of 30 Cystic Fibrosis Foundation-accredited care centers are now in operation.

    1965 The Cystic Fibrosis Foundation expands its support of basic science to find answers about this complex disease.

    1966 The Cystic Fibrosis Foundation launches a patient data registry that includes the history of patients seen at CF Foundation-accredited care centers.

    1978 The number of Cystic Fibrosis Foundation-accredited care centers now total 125.

    1980 The Cystic Fibrosis Foundation creates the Research Development Program, a network of research centers of excellence established at leading universities nationwide.

    1988 The Cystic Fibrosis Foundation launches the Cystic Fibrosis Services Pharmacy.

    1989 A team of scientists supported by the Cystic Fibrosis Foundation discovers the defective CF gene and its protein product (CFTR) thus opening the door to understanding the disease at its most basic level.

    1990 CF researchers achieve “proof of concept” that gene therapy (in the lab dish) is possible.

    1993 Landmark gene therapy trial begins in people with CF.

    1994 The Food and Drug Administration (FDA) approves Pulmozyme, which was proven to thin the thick sticky mucus in the lungs. the first drug developed specifically for CF.

    1997 The Cystic Fibrosis Foundation establishes the Therapeutics Development Program.

    1997 The FDA approves TOBI, the first aerosolized antibiotic designed for CF.

    1998 Specialized clinical research centers are designated as the Cystic Fibrosis Foundation’s Therapeutics Development Network.

    2000 Cystic Fibrosis Foundation Therapeutics, the drug discovery and development affiliate of the CF Foundation was established to govern drug discovery and development efforts.

    2000 Scientists supported by the Cystic Fibrosis Foundation map the entire genetic structure of the most common cause of CF lung infections-the Pseudomonas aeruginosa bacterium. Researchers can identify the function of specific genes and find ways (drugs) to turn off the bad ones.

    2002 A Cystic Fibrosis Foundation Therapeutics-supported study shows azithromycin improves CF lung health.

    2003 Cystic Fibrosis Foundation Therapeutics-supported scientists at Structural GenomiX, Inc. determine the 3-dimensional structure of a portion of the CFTR protein opening the door to more drug discovery opportunities.

    2004 More than 24 potential CF therapies are in the drug development pipeline.

    2005 Predicted median age of survival increases to nearly 37 years.

    2006 Cystic Fibrosis Foundation Therapeutics-supported studies in Australia and UNC show that hypertonic saline helps clear CF mucus and becomes a therapeutic option.

    2006 The first compound for CF, discovered through high-throughput screening at Vertex Pharmaceuticals, begins clinical trials.

    2006 Inspire Pharmaceuticals begins Phase 3 clinical trials of its innovative denufosol drug to hydrate and clear CF mucus.

    2007 VX-770, a potentiator candidate developed by Vertex Pharmaceuticals, entered Phase 2 testing. This drug may restore the function of the CFTR protein. Vertex also is working to develop corrector candidates, which aim to improve the function of the CFTR.


  • Posted by a hidden member.
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    May 16, 2008 3:27 PM GMT
    Imagine:

    If you gave up one trip to Starbucks this week, you could donate $5 and help add tomorrows to those with cystic fibrosis. Skip it for a week, and you would have at least $10 to make a difference in a CF person's life.

    Check out my homepage with the Cystic Fibrosis Foundation ( below) and consider donating. You could join our team and walk with us if you are in the area, send a donation and help us get closer to a cure, or most importantly become educated and spread CF awareness. Any and all efforts are greatly appreciated.

    http://www.cff.org/Great_Strides/AlexanderChang
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    Jun 02, 2008 11:03 AM GMT
    http://www.cff.org/Great_Strides/AlexanderChang

    The count down begins!!!!!!!! It's this coming Sunday!!!!!

    Help the kids!!!!

    http://www.cff.org/Great_Strides/AlexanderChang
  • Posted by a hidden member.
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    Jun 04, 2008 10:44 AM GMT
    http://www.cff.org/Great_Strides/AlexanderChang

    As many of you know, Cystic Fibrosis has touched my life deeply.


    In a little less than a week, hundreds of people will gather in Dayton Ohio’s Delco park to walk together. They will join forces to aid several thousand children and several hundred adults in the United States, and ultimately the world. These individuals are living with a fatal genetic disease known as Cystic Fibrosis.

    Many of you may ask why Cystic Fibrosis has become such a big deal to me. Over two years ago I had the distinct pleasure of meeting a woman who would go on to shape my life in a profound way. Second only to my mother, Jeri Dickey has become the most important and influential woman in my life. Emmy Award winner, dancer, choreographer, teacher, friend, mother, Jeri Dickey is also a crusader, and a person who should be canonized now, while she’s living! Jeri, is mother of four amazingly talented and brilliant children, two of which are living with Cystic Fibrosis. This is why it is so important to me. For all that Jeri has given me, I feel that I must do my part to not only give back to her, but to helping find a cure for all those living with Cystic Fibrosis.

    GREAT STRIDES is the Cystic Fibrosis Foundation's largest and most successful national fund-raising event. This year, I'm walking in the GREAT STRIDES walk at the Delcon Park walk on June 8th. Please help me meet my fund-raising goal of $1,000 by sponsoring me. Your generous gift will be used efficiently and effectively, as nearly 90 cents of every dollar of revenue raised is available for investment in vital CF programs to support research, care and education.

    http://www.cff.org/Great_Strides/AlexanderChang

    Making a donation is easy and secure! Just click the "Click to Donate" button on this page to go to make a donation that will be credited to my team.

    Any amount you can donate is greatly appreciated!

    http://www.cff.org/Great_Strides/AlexanderChang

    Cystic fibrosis (CF) is a devastating genetic disease that affects tens of thousands of children and young adults in the United States. Research and care supported by the Cystic Fibrosis Foundation is making a huge difference in extending the quality of life for those with CF. However, we continue to lose precious lives to CF every day. That's why your help is needed now more than ever to ensure that a cure is found sooner - rather than later.
    To learn more about CF and the CF Foundation, visit http://www.cff.org/Great_Strides/AlexanderChang

    Together, we can make a difference in the lives of those with CF! Thank you for supporting the mission of the CF Foundation and GREAT STRIDES!


    Thank you for taking a moment to look over this.

    If everyone who even glances at this post takes a moment to educate themselves on CF, i've done more than if i were able to raise a dollar for every word, in every book, in all the world!

    Thank you again!
  • HndsmKansan

    Posts: 16311

    Jun 04, 2008 12:34 PM GMT
    I appreciate your diligence in making others here aware of what you are doing and Cystic Fibrosis in general.

    I am confident you will give us a report on your walk after this weekend, what you achieved and more on the efforts to fight this disease. Again, your efforts are to be commended and we should all support Stripper Rocco in his efforts.


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  • Posted by a hidden member.
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    Jun 04, 2008 2:36 PM GMT
    Good for you!
    I have just made a donation for your walk!
    Continue the good work!
  • HndsmKansan

    Posts: 16311

    Jun 04, 2008 2:54 PM GMT
    teapimp saidGood for you!
    I have just made a donation for your walk!
    Continue the good work!



    Thanks Mark, your something else!

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  • Posted by a hidden member.
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    Jun 04, 2008 3:52 PM GMT
    EVERYONE!!!! Thank you guys so much!!!!!!

    I'm still trying to get to that $1,000 mark and i'm half way there...

    http://www.cff.org/Great_Strides/AlexanderChang

    What Is Cystic Fibrosis?

    Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:

    clogs the lungs and leads to life-threatening lung infections; and
    obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
    In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.

    Symptoms of Cystic Fibrosis

    People with CF can have a variety of symptoms, including:

    very salty-tasting skin;
    persistent coughing, at times with phlegm;
    frequent lung infections;
    wheezing or shortness of breath;
    poor growth/weight gain in spite of a good appetite; and
    frequent greasy, bulky stools or difficulty in bowel movements.
    Statistics

    About 1,000 new cases of cystic fibrosis are diagnosed each year.
    More than 70% of patients are diagnosed by age two.
    More than 40% of the CF patient population is age 18 or older.
    In 2006, the predicted median age of survival was 37 years.
    The Cystic Fibrosis Foundation

    Since 1955, the Cystic Fibrosis Foundation has been the driving force behind the pursuit of a cure. Thanks to the dedication and financial backing of our supporters--patients, families and friends, clinicians, researchers, volunteers, individual donors, corporations and staff, we are making a difference.
  • Posted by a hidden member.
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    Jun 05, 2008 5:07 PM GMT
    http://www.cff.org/Great_Strides/AlexanderChang



    HEADLINE: Dancers to help CF fund

    BYLINE: Dale Huffman

    Her children. The ability to dance.

    These are two of the things that have brought special meaning to Jeri Dickey's life.

    Now Dickey, a Springboro mother of four, is using her love of dance to raise money to help the two of her four children who are fighting cystic fibrosis.

    In so doing, she has organized a unique fund-raising dance concert that will include the best dancers in the Miami Valley, and will benefit anyone who seeks help through the Cystic Fibrosis Foundation.

    Dickey's son, Jerod, 8, and daughter, Jillian, 3, are fighting CF, and, according to their mother, "It has been a real education for our family learning to deal with this. But one day soon after Jerod was diagnosed at the age of 2, a young woman walked into my dance studio and she changed everything."

    Dickey, soon to turn 40, is a professional dancer, choreographer and teacher.

    She founded the Progressive Dance Theatre, a school of dance.

    "Our studio was located in Beavercreek in 1999 and one day a teenaged girl walked into the school and introduced herself as Michelle Tepper," Dickey said. "She told me she wanted to dance. But it was hard to find a teacher who would take her because she had frequent doctor's appointments and hospital stays."

    She said it was a shock when Michelle said she had CF.

    "She had picked my school just by chance, and always said she has no idea why she did. But when I told her my son, Jerod, was fighting CF, we bonded right away. I took her on, giving her private lessons as her schedule permitted."

    Dickey said she decided to organize a fund-raising event to benefit the CF Foundation. "And during that first benefit in 1999, Michelle and I danced together."

    According to Dickey, Michelle had written an essay about living with cystic fibrosis. "We recorded the words as Michelle read the essay. We put music to it, and Michelle and I danced, as mother and daughter, during the concert."

    Here are some of Michelle's thoughts from the essay:

    "Living with cystic fibrosis is a full time job in itself. A job that offers no vacation and requires 110 percent effort.

    "Life with CF is a life of disappointments and frustrations.

    "It is a life of routine and schedule, remembering to take meds and making
    time to eat.

    "It is a life of fearing death at an early age and being scared of the
    unknown.

    "It is a life full of wonderful people. It's a life of new technology and
    everyday is one step closer to a cure.

    "It is a life of hope, faith, and the belief in God.

    "It is a life that makes me who I am today. A real life that can make a
    difference.

    "Last of all it's my life and I wouldn't change it for the world."

    The 2005 fund-raising dance for CF will be Saturday night at the Northmont High School Auditorium, 4916 National Road.

    The program will include appearances by Dayton Contemporary Dance Company II, the Gem City Ballet, South Dayton Dance Theatre, SMAG Dance Collective, Centerville Contemporary Ballet, the Progressive Dance Theatre and dancers from both the University of Dayton, and Wright State University.

    Dickey, who teaches at both UD and Wright State, said general seating for the 7:30 p.m. performance is $10 for adults, and $5 for seniors and children.

    "Michelle will not be dancing with me this time," Dickey said. "She is now dancing in heaven. She lost her battle at age 21. Because of her, and for my children and all the children who are fighting this I am still dancing at 40. As long as there is breath in me I will fight for a cure."


  • Posted by a hidden member.
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    Jun 06, 2008 12:31 PM GMT
    I can say that I am more than proud to be a small part of this research!!!!!!!

    Dear Friend,

    We have good news! Today, Inspire Pharmaceuticals announced positive results from the first Phase 3 clinical trial of denufosol, an inhaled drug that targets the basic defect in cystic fibrosis.

    CF patients who took the drug showed significant improvement in lung function. Denufosol aims to treat the basic defect by using an alternative chloride transport channel, which allows sodium and chloride to move in and out of the cell, thereby enhancing mucus hydration and clearance.

    The Cystic Fibrosis Foundation has been involved from the very beginning, funding basic science research of alternate chloride channels, which led to the development of denufosol. The Foundation has worked closely with Inspire during the drug's development and provided funding for a key Phase 2 clinical trial.


    http://www.cff.org/Great_Strides/AlexanderChang
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    Jun 09, 2008 1:10 AM GMT
    To everyone who educated themselves and dontated thank you!!!!

    So the walk was today... and i thought it would be nice to put some faces to those who have been brought into my life effected by CF.

    The first image is of me, Jeri, and her 2 kids with CF
    The second image was this years team!!!!!

    The total walk raised $62,000!!!!!!!!!!!!!!!!!! Our team was in the top 3 fund raising team (they didnt tell us the ranking).

    PhotobucketPhotobucket

    Thank you again!!! AND KNOW that you can STILL dontate. Until the organize next years walk the proceeds raised will go to Great Strides '08

    http://www.cff.org/Great_Strides/AlexanderChang
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    Mar 12, 2009 4:08 PM GMT
    It's that time again!!!!!!

    Last year RJ members helped me surpass my goal!!!! Can we pull together and do it again?????


    http://www.cff.org/Great_Strides/AlexanderChang

    Cystic fibrosis is a devastating genetic disease that affects children and young adults. Advances continue to be made in finding a cure, but your help is needed now - more than ever - to help keep up the momentum of this life-saving research.
    Too many young lives depend on this vital research to let it go unfunded!

    GREAT STRIDES is the Cystic Fibrosis (CF) Foundation's largest and most successful national fund-raising event. This year, I'm walking in the GREAT STRIDES event in Dayton, Ohio on May 17th. Please help me meet my fund-raising goal of $1,000 by sponsoring me. You'll feel confident in knowing that your generous gift is used efficiently and effectively: nearly 90 cents out of every dollar you contribute goes directly toward supporting research and specialized care that improves the quality of life for those with CF. And, it's tax-deductible.

    Making a donation is easy and secure! Just click on the link below to make a donation to my fund-raising page where your donation will be credited to my team.
    Any amount you can donate is greatly appreciated!

    Donating to GREAT STRIDES is such a simple and effective way for you to show your support for this important cause.
    Together, we can make a difference in the lives of those with CF! Once again, thank you for supporting the mission of the CF Foundation!

    http://www.cff.org/Great_Strides/AlexanderChang


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  • Posted by a hidden member.
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    Mar 13, 2009 1:14 AM GMT
    http://www.cff.org/Great_Strides/AlexanderChang
  • Posted by a hidden member.
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    Mar 13, 2009 1:25 PM GMT
    http://www.cff.org/Great_Strides/AlexanderChang

    you know you would be doing the right thing!!!