Breathe Wristbands

For team members interested in getting some of the Breathe Wristbands to help towards your donation campaigns, please contact Sam or Mandy with quantities...We hope this will encourage people to show there support by donating $5.00 towards our team goal and get a Wristband to show awareness. Also, we have extras for all team members. Please just let us know and we will make sure and get some to you!

If you are interested in sponsoring Jeff's Entourage and would like to donate for a Breathe Wristband please email Samantha Relien (samantha.relien@charter.net) with your order.

Thanks in advance for your support!

Just One More Time...

Growing up with a CFer as a sibiling you really never know what they are going through, well until it's too late. Sam and I were privileged enough to have the most awesomest person as our brother, "Bubba" we like to call him. As more of a grown up now then when we were when we had to say goodbye there are many things that I look back on and just wish I could hear or see him do just ONE more time...now we just have our memories to look back on and we are lucky enough to have each other to remind of us the things that many would just forget about (there were 2 of us he toted around with him everywhere). At the time we didn't know that was odd...but now we do, how many grown adult men want their younger twin sisters with them all the time??? But, now I Thank God that we were those little sidekicks to him, the odd 3some....cause many of my memories with him were just the 3 of us being US...So, here they are...the Just One More Times...

Going to the movies and sitting in the back to crack jokes...one of the 1st movies we remember doing this at was Wayne's World!

Getting stuck out in middle of home and Hulen mall in a broken down truck and Bubba having to walk to get gas...the gas meter didn't work...imagine that!

Getting in a Duke of Hazzard type car accident and Bubba and Brandon pulling us out, while Brandon yells, "It's gonna blow man!"

Sitting by his side the first time he broke up with his first GF, I think he was a Freshman or Sophmore in HS.

Playing goalie while Bubba practiced his soccer moves...boy we were dumb!

Having him at Thanksgiving to taste Mems's dressing before she started baking it...Thanksgiving was Bubba's favorite holiday!

Going to a Tripping Daisy concert and being the only people under 5 feet there...boy we saw things that day that children just aren't supposed to see.

Going on any sort of date with him...Sorry Holly I know we cramped y'alls style back then.

Going to the pawn shop, CD trading place or to Mom for some extra dough for something extreme...if you knew our brother he loved having the "IT" thing at the time.

Sitting around listening to new music...I know that is where WE both got our love for music and the arts.

Watching one more Corey Haim movie...Dream a Little Dream, License to Drive, Dream Machine, and our all time favorite The Lost Boys...

Waiting for the school bus in Willow Park...you may think this one sounds lame, and it may be, but every morning we would assume our positions of waiting for the bus...Mandy or I would be near the edge of the driveway to be able to see the bus from a distance, the other would be halfway between the house and the bus stop, and then Bubba in charge of locking the door and finding UB40 Red Red Wine on the radio...I kid you not, we literally did this every morning. Waited for the bus and rocked out...Oh to be young again...

We have many many more that we could list...but we want to hear yours...please leave your "Just One More Times"... in the comments section...

Awesome Story of CF and Organ Donation...

Mandy and I have been trying to find a story about CF and Organ Donation, and came accross the following story on one of our fellow bloggers sites CF Husband. We have been organ donors since we were able to make the choice on our own. Bubba was on the transplant list to receive double lungs, and it was one of the most awesomest feelings finding out that he had been added to the list. It gave our entire family a new found hope that we would be able to have more time with Our Angel. After recurring illnesses and hospital stays, Bubba just wouldn't have the capacity/strength to endure the transplant. Organ Donation and Transplant, both very time sensitive decisions, and both definitely situations of being at "The Right Place, At The Right Time!" I encourage ALL to be an organ donor, just think of the lives you could save, and all the families you could give that HOPE to! What an amazing thing...having the ability...To Save A Life!

Here's a story of a young woman who was inspired to become an organ donor by attending a Great Strides Walk for CF. At the age of 15, her lungs saved a CFer's life.

Valerie Vandervort-Boyer's feet sped over a treadmill's moving surface as her ponytail flicked side to side. She ran or walked but always kept going. Valerie's not one to stop unless she must. Life's short. She knows this -- she almost ran out of it... (Read The Entire Story!)

About 65 Roses...

"65 Roses" is what some children with Cystic Fibrosis (CF) call their disease because the words are much easier for them to pronounce.

Mary G. Weiss became a volunteer for the Cystic Fibrosis Foundation in 1965 after learning that her three little boys had CF. Her duty was to call every civic club, social and service organization seeking financial support for CF research. Mary's 4-year-old son, Richard, listened closely to his mother as she made each call.

After several calls, Richard came into the room and told his Mom, "I know what you are working for." Mary was dumbstruck because Richard did not know what she was doing, nor did he know that he had cystic fibrosis. With some trepidation, Mary asked, "What am I working for, Richard?" He answered, "You are working for 65 Roses." Mary was speechless. He could not see the tears running down Mary's cheeks as she stammered, "Yes Richard, I'm working for 65 Roses."

Since 1965, the term "65 Roses" has been used by children of all ages to describe their disease. But, making it easier to say does not make CF any easier to live with. The "65 Roses" story has captured the hearts and emotions of all who have heard it. The rose, appropriately the ancient symbol of love, has become a symbol of the Cystic Fibrosis Foundation.

65 Roses® is a registered trademark of the Cystic Fibrosis Foundation.

The Rules of Life by Jeff Smith

Going to sleep isn’t as easy as it used to be, but neither is waking up for that matter. Living with Cystic Fibrosis is a hard road, and sometimes I feel like taking an off ramp, but I’m determined to make it and live a normal life.

There are rules to this game, strict rules and it is in your best interest to follow them, or CYSTIC FIBROSIS might turn a bit scary.

1. Always, always stay positive, and keep your head in the game. Trust me, I know this is not easy, but you’ve got to. If you let your guard down, you get sick, and then your sidelined for a while.

2. Don’t let CF run your life. Be normal, do normal things and don’t sit around and mope, waiting for the animal to attack.

3. Don’t be afraid of being afraid, because it is scary and dark sometimes. Let your feelings out. Suppressing them does us no good, which leads to rule #4.

4. Find someone to talk to, for me it is my partner in life, my wife, the Dale Evans to my Roy Rogers, the Minnie to my Mickey, the Lois Lane to my, well you get the picture.

5. Listen to your doctor and make sure you understand what is going on. This is very important as you get older.

6. Be able to make the best of any situation. I just got a port, I’m not getting stuck with anymore scary nurses trying to find a vein to shove a pic line in.

7. Never suppress your cough. That one is for you Dr. C.

8. Always remember your enzymes, because if you don’t your wife might make you sleep outside.

9. Always tape your feeding tube to your button, because if it comes loose in the night you will have the stickiest mess since the Exxon-Valdez.

10. The last couple of rules were a bit on the lighter side, but seriously stay strong, positive, and never let them see you sweat.

These are the rules of the game. Follow them at your own risk. They work for me. I’m looking forward to my 30’s.

Great Strides 2008...

It's just around the corner Ya'll...Mark your Calendar...

Sunday - June 8, 2008 @ Sixs Flags Over Texas

What Is CF?

What Is Cystic Fibrosis?
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.

In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.

Symptoms of Cystic Fibrosis
People with CF can have a variety of symptoms, including:
very salty-tasting skin
persistent coughing, at times with phlegm
frequent lung infections
wheezing or shortness of breath
poor growth/weight gain in spite of a good appetite
frequent greasy, bulky stools or difficulty in bowel movements

Statistics
About 1,000 new cases of cystic fibrosis are diagnosed each year.
More than 70% of patients are diagnosed by age two.
More than 40% of the CF patient population is age 18 or older.
In 2006, the predicted median age of survival was 37 years.

Since 1955, the Cystic Fibrosis Foundation 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.