Team Jonah's goal for 2011 is $25,000

        This past year has been a big one for Jonah. He is now more years old than he can show with the fingers on one hand. He rode Space Mountain for the first time at Disneyland. He independently assembled his first 1,000 piece Lego set. And, most exciting of all, he became a big brother to his precious baby sister Ansley. This past year he has also continued his daily battle against Cystic Fibrosis, the dreadful disease that would love nothing more than to destroy his lungs as it fills them with thick, sticky mucus and infection and strip his body of nutrition and energy.
        CF is a devastating genetic disease. At this point, there is no cure, and since CF only affects approximately 30,000 people in the United States, there is no government funding to find a cure. Yet, for over sixty years, the Cystic Fibrosis Foundation has worked tirelessly to fund research and find a cure. In recent years, some incredible progress has been made. Drugs and therapies have been developed to fight the effects of the disease and improve treatments and daily life for CF patients. There is even a drug called Ataluren that in clinical trials is showing promise to reverse the basic defect in the type of CF gene mutation Jonah has. Patients on this study taking Ataluren are actually testing negative for CF! If this drug is approved, the hope is Jonah will be able to take it as a pill three times a day, stopping CF's ill effects on his body and preventing future damage or deterioration. If it works as expected, the hope would be to eliminate, or at least drastically reduce, Jonah's current regiment of treatments and medications.
        We are so excited and encouraged by the hope Ataluren brings! Until then though, our daily battle to fight CF remains expensive, time consuming, and unrelenting. Jonah has to spend an hour a day wearing a tight compression vest and inhaling various nebulized medications. He recently surpassed his 4,500th breathing treatment. Every day, in addition to his nebulized medications, he takes a prescription vitamin, acid blockers, a sinus spray, a high calorie supplemental drink, a digestive aid, and about 35 enzyme capsules to help him properly absorb nutrients from his food. Every time he gets a cold, he has to do three or even four breathing treatments a day to clear out his lungs. We are constantly pushed to increase his weight gain, as there is a high correlation between weight and future lung function, yet this is tough with a little boy who eats incredibly slowly and often doesn't have much of an appetite. CF inhibits proper digestion, which leads to frequent tummy aches. The fight against CF never allows for a day off; on Christmas, on vacation, on days none of us feel like dealing with it, we have to think about, and battle CF. And Jonah does all of this, as well as endure x-rays, blood draws, throat cultures, poking and prodding by doctors, and hospital procedures, with such graceful acceptance. He goes through all of it just to stay healthy, something most children never give a second thought to. As his parents, we have the constant job of ensuring that he gets the best care possible, staying on top of numerous prescription refills, and dealing with never ending medical bills and insurance questions and discrepancies. And we have the emotional stress of worrying about Jonah's health and future, as well as how all of this will affect his twin brother Javan and his baby sister Ansley. Daily, we must rely on the Lord's strength and provision, and we must admit, sometimes it is very difficult.
        When the Cystic Fibrosis Foundation was founded in 1955, few children with CF lived long enough to attend elementary school. Thanks to the research and care the foundation supports, the median age of survival is now 37 years old. While this progress is great, what we need is a cure. Every year the CF Foundation sponsors Great Strides walks throughout the county, bringing people together to raise money and awareness of CF. The success of the walks is crucial to the foundation's ability to continue life-saving research and support CF care centers. Since 2006, Team Jonah has grown to over 100 walkers and has raised $129,000 for the CF Foundation! On Saturday, June 11th, our team will be participating in the Long Beach Great Strides walk at Heartwell Park. We hope to raise an additional $25,000 this year.
        Please help us meet our goal and help find a cure for our precious son and the thousands of others who battle CF. VWe put this website together so that you can read more about Jonah, watch his video, and get updates on our team's fundraising progress. To make a secure online donation, please click Donate Now. Or write a check payable to Cystic Fibrosis Foundation and mail it to us at "Team Jonah P.O. Box 4326 Lakewood, CA 90711." We greatly appreciate any amount you can donate to help us toward Jonah's cure. All contributions are tax deductible and will be used to continue the CF Foundation's vital research and care programs. We welcome anyone to join our team and walk with us on June 11th. To register, click Join Our Team. We are so thankful for the many people who support us and are helping us work to change the meaning of the letters CF to Cure Found!

Sincerely,
Rob, Marikka, Jonah, Javan and Ansley Ostermann
Email Us
P.O. Box 4326
Lakewood, CA 90711