Great Strides walks help fund research to find a cure for cystic fibrosis. Great Strides walks are held at close to 600 sites throughout the country, raising over $40 million dollars nationwide. Robert has been a Seattle Great Strides Walk Committee Chairman since 2000.
Our team, Tori's Troopers, raised over $18,000 in 2023. As you read the rest of this page, we hope we can convince you participate or contribute as well.
What is Cystic Fibrosis?
Cystic Fibrosis (CF) is the number-one genetic killer of children and young adults in this country. Approximately 30,000 people in the United States have CF. A defective gene causes the body to produce an abnormally thick, sticky mucus. This abnormal mucus leads to chronic and fatal lung infections and impairs digestion. Currently, there is no cure. Median life expectancy for someone with CF is about 50 years, which is a tremendous increase since Tori was born.
Scientists supported by the Cystic Fibrosis Foundation are translating what they learn about the CF gene and CF cells in the laboratory into promising new treatments. Based on their success, landmark gene therapy studies and clinical trials on new drug therapies and clinical trials on new drug treatments are now underway.
Tori and Cystic Fibrosis
Our daughter Tori was diagnosed with CF when she was about six months old in 1993. Our goal since then is to do everything we can to help Tori and 30,000 other people win their battle with CF. One of our biggest difficulties is convincing people that Tori has a fatal inherited disease since she doesn't look sick on the outside. Of course, most people don't see the 25 enzyme capsules she takes everyday (her pancreas, typical in CF patients, can't secrete digestive enzymes to help digest food), the antibiotics and other medication she takes almost year-round and the chest PT (clapping) she gets when her lungs get gunky with mucus.
Tori's smaller airways in her lungs have been difficult to keep open, so she does daily treatments with Hypertonic Saline, high tech salt water, and Pulmazyme, a mucus thinning drug inhaled via a nebulizer. She's had three sinus surgeries already to remove polyps. Tori was diagnosed with asthma in 2002, so she also takes Advair to help deal with that.
Why should you contribute to the Cystic Fibrosis Foundation?
Everyone has priorities when it comes to donating to charity. Our priority is pictured above. Here are some tidbits that we hope will convince you to make the Cystic Fibrosis Foundation your charity of choice as well:
- The CF Foundation is consistently ranked amongst the best health charities in the nation. 90% of the dollars raised goes directly to fund research. The Foundation creatively funds research, technologies and clinical trials that most for-profit drug companies won't touch since the market is so small.
- The average life expectancy of CF patients has increased from 11 years to over 40 years of age since 1960. 'Adult CF Patient' used to be an oxymoron.
How you can help
We have one goal: Collect as much money as possible. Money is what funds therapies that keeps patients like Tori healthier today and money drives the research that will ultimately find a cure for CF tomorrow. In order to collect as much money as possible, here's what you can do:
1)Form a team and walk at a Great Strides event - Since this is a web page, you could be reading this from anywhere in the world....good morning, Albania! If you're interested in walking in an event outside of Washington state, you can find Great Strides information at the Cystic Fibrosis Foundation web site, http://www.cff.org/great_strides. Once you've registered you can start collecting donations (many companies have matching funds as well) and submit your booty at the event. Team members are eligible for prizes based on the amount of money they raise.
2)Walk as a member of Tori's Troopers - If you're in the Seattle area, consider walking with us. Our team has a large number of members, usually between 20 and 60 each year, but we're always willing to take on new members. Members collect donations and turn them in as a team. Considering the number of weirdos lurking on the Internet (nothing personal!), we won't give out our address or phone number here, but e-mail us and we can probably work something out.
3) Send a check directly to the CF Foundation office - Seattle office address is listed below. Checks are made payable to CFF. Make sure you put a note on it saying it's for Tori's Troopers and the team gets credit for that donation.
4)Spread the word with E-mail - It's like spam, but in a good way! It doesn't cost anything to use that e-mail address book! You could also refer people to the national site, this site or this specific page or our team page at cff.org. That takes almost all the work out of it!
5) Participate in other CF fundraising events - Great Strides is the largest, but not the only, CF fundraiser. Almost every month of the year you can also bowl, golf, play tennis, climb stairs or just party to raise money. The Washington CFF chapter is a great resource for those events in Washington and your local CFF chapter can help with events in your area.
6) Donate on-line - Click here to go to our team page and click on the 'Donate to a team member' button to make a secure donation to Tori's Troopers.
