There is no cure for Cystic Fibrosis (CF). CF is a genetic disease that affects the respiratory, digestive and internal organ systems of about 35,000 people in the US – over 2,300 in California, and nearly half of those are in Northern California. Over 10,000,000 Americans are unknowing carriers of the defective gene.
CF causes the mucus that "lubricates" the operations of all of the internal organs to become thick and sticky, and unable to perform its lubricating functions. It can allow bacteria to colonize in the mucus, making it much more dangerous and difficult to treat.
In the early 1950's and before, the life expectancy of someone with CF was maybe five years. That was extended to teenage years as a result of more effective treatments. But, real progress began after 1989, when the gene that causes CF was identified. Since then, about 2,100 different mutations of that gene have been identified, and work to find better treatments with the goal of a cure for all has accelerated.
The Cystic Fibrosis Foundation (CFF) was created in the 1950's by parents of children with CF who were not satisfied with medical advice to enjoy their children while they had them. Now the leading resource for support, care, treatment and research of CF, CFF's highly successful effort to develop drugs, through its venture philanthropy model, has resulted in a continuing pipeline of new therapies. It is now the model for other nonprofits, and has been called “the best story in medicine.”
Almost every one of the myriad of approved drugs to treat the results of CF and to modulate the disease itself is the result of funding from CFF. In the last 30 years, life expectancy has more than doubled. Because of that, in the last couple of years, for the first time ever, a majority of people with CF are adults.
CF has always been known as a terminal or fatal illness, but thanks to CFF and others working to find a cure for all forms of CF, it can maybe be better described as a life-threatening or life-shortening illness.
Our inspiration and hero is Buster.
Buster is almost ten years old. To his friends and family, he is perfect, but despite that perfection, he has cystic fibrosis (CF), a terrible genetic disease. Buster cannot digest his food like others do. Any infection is very serious for him, because his lungs and other organs fill up with a thick, sticky mucus that will eventually prevent them from working altogether. Every day, he takes over forty pills, and endures well over an hour of breathing treatments. Every day - for the rest of his life. If he gets sick, all of those numbers rise dramatically.
Since Buster's Buddies joined in this fight, even before Buster was even born, great things have happened in the world of CF. Buster is taking a medication called Trikafta, which was only an idea when he was born. Trikafta is a “game changer” in the treatment of the symptoms of CF, and there is a fifth generation of these “miracle” drugs in the modulator pipeline. And technoligies like CRISPR and other gene editing tools have emerged. All because of the money, time, energy and commitment of people who believe that Buster and every person with CF should have “more tomorrows.”
Buster’s friends, family and supporters created Buster’s Buddies, an IRS 501(c)(3) organization (IRS 47-4124415) in 2015, to support CFF, The Legacy Foundation, CFRI and the Boomer Esiason Foundation, and other organizations and programs helping CF families and patients, to raise money for a cure for this deadly disease and for support of patients and caregivers. Your donations to Buster’s Buddies are fully tax deductible to the extent allowed by law under Internal Revenue Code Section 170.
Since before Buster was born in 2013, Buster's Buddies have raised and donated well over $450,000.00 to the Cystic Fibrosis Foundation, and other organizations supporting people with CF and their families and care givers.
Buster's Buddies was incorporated as a public benefit non-profit corporation in the State of California on May 26, 2015. It was granted IRC 501(c)(3) tax exempt and deductible status on January 29, 2016.
Dennis Pedersen serves as President of the corporation. Suzanne Pedersen serves as Secretary and Carla Pedersen serves as Treasurer.
Dennis Pedersen, Suzanne Pedersen, Laurel Douglas, Michael Douglas, Rob Pedersen and Carla Pedersen serve as directors.
Contact Buster's Buddies at drpssp@yahoo.com
Buster's Buddies Facebook page, www.facebook.com/bustersbuddies/
@bustersbuddies
Cystic Fibrosis Foundation at www.cff.org
Cystic Fibrosis Research Institute at www.cfri.org
Colton Underwood Legacy Foundation, at www.coltonslegacy.org
Boomer Esiason Foundation, at www.esiason.org
RockCF Foundation, at www.letsrockcf.org
925-708-7702
40 Birch Drive, Walnut Creek, CA 94597
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