Team Jonah walks to Raise Funds and Awareness For Cystic Fibrosis
Long beach, June 6 – Team Jonah walks in their seventh Great Strides walk at Heartwell Park on Saturday, June 9th in Long Beach to raise funds and awareness for the Cystic Fibrosis Foundation.
In the 1950’s children infected with Cystic Fibrosis were not expected to live to start elementary school, today the median survival age in the United States is 37 and there is hope for more. 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. Through the tireless fundraising efforts of the few, research on finding a cure for Cystic Fibrosis has made significant advances. Specifically for children like Jonah, whose specific gene mutation can be targeted by a current drug Ataluren which is Phase three of clinical trials.
Unfortunately, Jonah's lungs already have irreversible lung damage. While Ataluren is showing promise to greatly improve life quality and expectancy, it cannot reverse damage that has already been done nor the repercussions that damage might cause. His parents, Marikka and Rob Ostermann along with Jonah’s fraternal twin brother and baby sister are still fighting tirelessy and courageously for Jonah and have hope in the research that the funds they raise will provide. Now that Jonah has turned 6 and is beginning to read, Jonah’s parents are grappling with how to tell Jonah that he might not outlive his parents, a heartwrenching moment for all.
For the Ostermann family, they rejoice for everyday that Jonah is able to live and are grateful for the support they have received. Team Jonah, consisting of nearly 80 walkers, will be walking with Jonah once again to support the valuable research that could still save his life. Team Jonah has raised a total of $155,000 since they began walking in 2006. This year, they hope to raise an additional $25,000.
Treatment for Cystic Fribrosis requires Jonah to:
- sit for 30 minutes at least twice a day wearing a tight compression vest and inhaling numerous medications.
- Sinus sprays, prescription vitamins, acid blockers, high calorie supplemental drinks, digestive aids, and about 35 enzyme capsules a day to help him properly digest his food.
- X-rays, ct-scans, blood draws, throat cultures, hospital procedures, and poking and prodding by doctors.
All of these must be done diligently; on his birthday, on vacation, and on days Jonah’s parents or Jonah even feel like fighting it. A battle that even when tirelessly fought still leaves him with a median life expectancy of only 37 years old. To donate to this worthy cause please go to www.teamjonah.com.
The Cystic Fibrosis Foundation, founded in 1955, 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. For information please go to www.cff.org.
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The Lakewood Long Beach Mothers of Twins Club recognizes a partnership of support with the National Organization of Mothers of Twins Clubs, Inc., www.nomotc.org