Saturday, March 3, 2012

2012 Great Strides Letter

Dear Family & Friends-
We are beyond blessed to be able to once again share our journey with cystic fibrosis with you! Before we jump in and share an update on our kids’ health we would be amiss to not share with you THE most exciting news in the CF world. On January 31st the FIRST DRUG EVER to target the UNDERLYING CAUSE OF CF was approved by the FDA. Kalydeco (VX-770) has been noted as a major advancement in the search for a cure for cystic fibrosis. While the drug only targets 4% of the CF population, it is raising new hope for those, like our children, with the Delta F508 mutation. A drug similar to Kalydeco is already in the works (VX-809) with Phase II clinical trials currently underway.

This news came across our computer screens just after the trip of a lifetime. Cayden was granted a trip to Disney through the Make-a-Wish Foundation of WI the week after Christmas. We can not even begin to express how grateful we are to all those involved who made Cayden’s wish a dream come true. It was an absolutely magical time for Cayden and our entire family. Cayden was able to meet Mickey Mouse, pilot a small plane, feast at Medieval Times, feed the dolphins at Sea World, and even eat ice cream and hula hoop with the Notre Dame and Florida State Football teams before they played in the Champs Bowl. During our stay, housing accommodations were provided by Give Kids the World. Give Kids the World is a non-profit organization that exists only to fulfill the wishes of all children with life-threatening illnesses and their families from around the world to experience a memorable, joyful, cost-free visit to the Central Florida attractions, and to enjoy the magic of Give Kids The World Village for as long as there is a need. Since 1986, Give Kids The World has hosted more than 107,000 families from all 50 states and more than 70 countries. Give Kids the World was founded by a Belgian Holocaust survivor who spent 5 years in Auschwitz and Matthausen concentration camps. While operating a hotel in the Orlando area, he became passionate about helping sick children fulfill their dream of a family vacation.

The Village operates with over 1500 volunteers each week (yes, you read the 2 zeros correct) and only 120 year round staff members. The "angels" as they call them are all there for one reason: to serve your family. The most amazing thing is to know that the other 200 families there are also there for the same reason, because they too care for a child with life-limiting illness. It was most special because for the first time Colin wasn't left out and not included because he isn't like his other siblings. For the entire week he was given the most special love and wasn't told no. That was what made our stay at the Village so unique.

After our magical trip, we received word from clinic that Cayden’s culture was positive for pseudomonas. Two weeks later, Trinity’s culture had the same outcome. Postive for pseudomonas. Since then we have spent countless hours combating the bacteria with an inhaled antibiotic called TOBI given twice a day. This drug is essential to eradicating pseudomonas as soon as possible to prevent lung tissue damage. After Cayden’s first 28-day cycle his culture remained positive, but with a much small growth of pseudomonas. We are now two weeks into Cayden’s second month-long treatment with TOBI. For now, Cooper has not cultured positive and still takes Pulmozyme (nebulizer treatment) daily. Adding in all the extra nebs has brought us to 7 nebulizer treatments a day. That’s nearly 4 hours of our day spent in treating cystic fibrosis.

And while most recently cystic fibrosis has not been so kind on our life, our year as a whole was a huge celebration of some great moments in fund raising. Our kickball tournament raised a record $12,000 ($2,000 more than last year) bringing our combined team total for 2011 to $25,000.

Let this be our personal invite to you. To help us make certain that drugs like VX-809 will come to be available to patients in the very near future. That things only continue to progress in the direction of a cure.

There are so many ways you can support our team.
1. If you would like to help financially and make a donation to our team “Topel Trio”, please send a check payable to the “Cystic Fibrosis Foundation” to Tiffany & Chris Topel, 123 S. High Avenue, Jefferson WI 53549. Or visit our Great Strides webpage: http://www.cff.org/Great_Strides/TiffanyTopel5250 to make an online donation and watch our 2012 montage. Our pancake breakfast and rose sale in Fennimore will take place on Sunday, April 15th. Our rose sale in Jefferson will take place early April. Mark your calendars to join us on Saturday, September 29th for our 5th annual “Kickin’ for a Cure” in Fort Atkinson.
2. Share our family’s story/this letter to someone you know who might be interested in helping us raise money for the Cystic Fibrosis Foundation. We also try to blog monthly with updates on our kids’ health @ www.youthministermom.blogspot.com
3. Walk with us! Join our family on SATURDAY, May 19th at Elver Park in Madison. Don’t live near Madison? Great Strides also happens around the country so you can walk anywhere! Send us an e-mail and we would be glad to help you connect with a walk or to join our team.
4. Lift our family up spiritually. Even if you can not financially support us, please know that we appreciate and are grateful for all the love and prayers we receive. It means so much to us and gives us the strength to continue fighting each and every day. It is one of the greatest gifts of support you can offer.
5. Learn more. On Sunday, March 25th from 2-4 pm our family will be hosting “Dress to Impress: Gowns for CF” open house (at our home: 123 S. High, Jefferson) kick off party for our 2012 fund-raising complete with $10 Prom Gowns, Mary Kay makeup tips (rep: Kari Johnson) and registration to get on board for reaching our team goal of $30,000. If you have a prom dress you would like to donate, please contact Tiffany by March 20th. As a bonus for coming, Mary Kay sales will be donated to our cause!

While our team name has changed over the years (three times to be exact!), you can be sure that we will never stop raising money for a cure and that the foundation will be putting every dollar you donate or raise directly to research. We can never thank you enough for your support. We are incredibly blessed by amazing family, community, and friends. And without you we couldn’t do all we are for the CF Foundation. We pray that your family will be blessed this year in the same way that we have been. Thanks for being the cure and may all our dreams of our cure for CF come true in 2012.

With Love, Chris, Tiffany, Cayden, Colin, Trinity & Cooper Topel
E-mail: tippy_topel@hotmail.com

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