65 Roses Golf Tournament & Dinner

~Sunday, October 12th, 2008: I attended my 2nd 65 Roses Golf Tournament Dinner. This year the dinner was held at Lambert's which was delicious. After an upsetting Cowboy's game that started the night out, it was a sigh of relief to be among a close group of family and friends. Thanks to The Boy's the cocktails were definitely flowing, well "I blame them ;)~" Anyhow we sat down to dinner around 7:30 or so, followed by guest speaker and CFer Farrel Amis. Whom spoke a little of what the donors and volunteers mean to her and how important the research could be for her to live a longer healthier life. She started the live auction out by trying to raise money with roses that her and her mother brought from their home town of Tyler. Let me tell you, these were some of the most beautiful roses I have ever seen, and as of this date I still have one that is in full bloom in a bud vase in my bathroom. All in all, I believe with the sell of tickets for the dinner as well as the Live Auction and Silent Auctions held that evening, the CFF raised around $24,000.

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~Monday, October 13th, 2008: Mom and I joined the CFF Girls in the setting up and getting ready for the golf tournament. Despite the weather being a little gloomy, there was an excellent turn out. Last I heard there was an esitmated $65,000 raised towards the dinner and the golf touney. Keep in mind that $0.90 of every dollar donated to CFF goes to research. We are hopeful that a cure will be found soon and we can get the CFers on the road to breathing smoothly.

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~A Huge thanks to Jon and Susan Hellberg for their contributions to CF and finding the cure. I wish there were more people like them. Also, it was a great treat to be able to share the dinner with Brandon, as most of you know he is Bubba's best friend and partner in crime. He also has taken on the role of being a big brother to Mandy and I, as Bubba would have wanted. We cherish any time that we are able to spend time with him and his wife Betsy and their little girl Gracie

Jon & Susan Hellberg

Me with The Hellberg's

Drew & I

Mom, Brandon, and I

Mom & I

Brandon & Betsy

Shannon, Laura, Sam, Kathy, & Beverly

Huge Thanks to the group of ladies above...if it weren't for them the

Fort Worth/Tarrant County CFF Chapter would not be where it is...You Gals Rock!!!

Silent Auction Winner!!!

8 Years Ago. Today.

Our lives as we knew them were changed forever more. Losing a best friend, son, and brother; is what Mom, Mandy, and I were living in reality. Something I never thought 8 years ago would ever happen to our family. I have realized over the last 8 years that, life is never a certain thing. Just something you have to hold on to, and cherish every minute of. Not only do we remember you today Bubba, but everyday for the rest of our lives till we meet again. Your memory lives on in us, and we carry it everywhere we go. Thank you for your strength and watching down on us from Heaven. You are the Guardian Angel in all 3 of our lives, and I truly believe you have had a hand in guiding us through our lives for the last 8 years. We love you Always and Forever!

Great Strides 2009...

Yes, That's Right...we are already underway for planning the Great Strides walk for 2009. We will be participating on our team Jeff's Entourage this year, as well as; We (Me, Mandy, and Mom) will be joining up with Beverly James (Senior Director of Special Events for CFF/FTW-Tarrant Chapter) forming a committee to raise at least 15% more then 2008 ($121,000). Which means we will be shooting for an overall goal of $140,000 in 2009, if not more :)

Just wanted to make a quick post to keep all abreast of upcoming events.

Also, we are looking for any corporate sponsors that are interested in helping toward the "Cure Found" for Cystic Fibrosis. If anyone has ideas or questions regarding getting some corporate sponsors involved, whether it be the company you or your significant other work for, or possibly a family business, please feel free to email me at samantha.relien@charter.net. Please note: this a great way for name recognition as well as it is tax deductible.


Thanks,

Sam

I Share My Words & Thoughts...

Today I come to talk to you all about a very special person to me. Someone who many of you refer to as Jeff, but to me he is my "Bubba." Bubba was always there for me when I needed him, and I know in my heart that he still will be beside me in all that I do in my life. He was not only my brother, but he was one of my very closest friends. He always had the best advice and knew exactly how to make me smile when I wasn't having the best of time. Even though he suffered everyday of his life with CF and struggled every minute to breathe, he didn't dwell on it. He lived life to the fullest each day, never taking anything for granted, and always putting others first. As Joan Baez said, "You don't get to choose how you're going to die. Or when. You can only decide how you're going to live, NOW!" This was exactly how Bubba lived day to day, with no regrets, and I will always take that with me and remember everything he has taught me. When I was younger, I was told that my brother may not live as long a life as me, but I never believed that; because he was such a free spirit with so much life about him. Bubba always assured Mandy and I that no matter what lied ahead for him that he would be at our graduation. Before I walked across the stage to receive my diploma, I saw my brothers smiling face, happy as ever, sitting front row with camera in hand. I know Mandy and I made him proud that day. We feel blessed to have had a brother take such an active role in our life, and we will love and remember him forever...

I debated on posting this, to this blog. Seeing as though it was written and read for the services held for my brother when he passed. Then I remembered how much it took for me to stand up and read this in front of everyone, and the way I felt afterwards too! It was one of the hardest yet rewarding things I have been through. I know how much it meant for me to get up and speak for Bubba, and I did it not only for myself and Mandy, but more to honor him and what he means to me. Through the years I have realized how truly blessed I have been in regards to the family that God has given me in life. We all have things to be thankful for; my family, extended family, and friends, is what I believe is my one "Great Treasure", in this earthly life! Although I miss Bubba on a daily basis, I feel honored to have been such an important role in his life, like he was in mine! To those of you who had the chance to meet him, you know exactly what I'm talking about...he was larger than life, and my true "Guardian Angel!"

I experienced a lot during the month of September 2000, but also learned so much about the human spirit! I no longer am afraid of things that used to frighten me...in fact, I'm more curious then ever, about what my future holds for me. I know that I have Bubba who will always be here to help guide me through and listen to all my worries, and although he may not be able to give me answers, he will be there to catch me if I fall. I know he will, because he already has come through for me on so many occasions, and he and I know what those are! It may sound silly, but a bond you share with someone like Bubba is never lost, just goes to a different level! I truly believe that when I leave this world, my Bubba will be there to greet me with open arms, and although I'm not just ready yet, I get excited for the day that we meet again!

I posted this originally on my Myspace blog, and to me it was more like a journal post, and a way for me to get the word out about CF and Great Strides. The work we have done over the past couple of years for the CFF and Jeff's Entourage has given me something to hold on to, and dream about. I do believe that there is a cure for CF and I will continue fighting and spreading the awareness...until we meet that day, and then some!

Now Showing...

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Jeff's Entourage ~ Great Strides 2008

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I know many of you have been wanting to see pictures from the walk...so without further ado...here is the slideshow...if anyone has any pictures they want added...please forward those to a team-leader and we will get those added for everyone to see...I personally wanted to Thank all that donated and/or walked with us on Sunday...it was a great turn out...and I was personally speechless as I gazed out of the sea of Camo that surrounded the parking lot...what a way to Honor our Bubba...and his commitment to this cause. I'm already looking forward to next year...

Also...please keep an eye on the blog...we have some pretty amazing news to share...we will be updating as soon as we know more...

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Jeff's Entourage-Great Strides 2008

WOW...It's this weekend...

Ok guys...now is the time to start getting those final donations in...you might want to remind all the people that have been waiting for the walk to get closer, because it's this weekend...3 days away in fact :O The shirts look awesome and I know the team leaders are all excited to see everyone and Congratulate everyone on all the money raised for this wonderful cause...something that is very dear to every single one of our hearts. Thanks to all of you...the hard work you have all put forth towards meeting your goals is amazing...See you on Sunday!!!

4 weeks...

And counting...

Just wanted to remind everyone that the walk is fast approaching...Now is the time to start getting serious about those pledges and reaching those personal fund-raising goals...Please let one of the co-leaders know if you are interested in getting some of the BREATHE wristbands...we have plenty! Can't believe the walk is almost here...and can't wait to see everyone...

Go Jeff's Entourage!!!

Attention...

May Declared National Cystic Fibrosis Awareness Month

Team get out there and make everyone aware by getting those sponsors...we only have a month and 5 days to get our donations in, and we still have a lot to go according to all your personal goals...So, from your team leaders...it's time to bust a move!

(Psst...I still have tons of Breathe Wristbands...do I have ANY takers?)

Genetic Non-Discrimination Act and Newborn Screening Laws

May 1, 2008

The Cystic Fibrosis Foundation praised the passage of two important pieces of legislation. One law protects those with CF from discrimination based on their genetic disease. The other new bill helps diagnose cystic fibrosis at the earliest stages.

Today Congress passed the Genetic Information Nondiscrimination Act (GINA). Originally proposed more than ten years ago, GINA helps to protect people with cystic fibrosis from discrimination by insurance companies or employers. The law also protects those who carry the defective CF gene, but do not have symptoms of the disease.

The new law provides legal safeguards for people who have been denied health coverage or employment because of genetic information, and makes the act of such discrimination illegal. This law will become increasingly important as genetic testing becomes more widespread. President Bush is expected signed the bill in the near future.

President Bush signed the Newborn Screening Saves Lives Act into law April 24. The bill provides additional resources for new and existing newborn screening programs through 2012. Newborn screening allows cystic fibrosis to be diagnosed early, which gives every newborn a better chance for better health and a longer life.

(Just wanted to share; I received the update through CF Foundation, and thought I would post it for my fellow team members and bloggers)

Let's Go Team!

Attention...shirts are on order and as of today we have a total of 34 registered walkers! Now, it's time to raise donations to reach our goal. Let's make this year even better then last. Jeff's Entourage raised almost $5,000 in 2007, according to everyone's listed goal amount we are hoping to reach almost $8,000. Let's make it happen guys! Also, if your goal amount listed is not what you are expecting to raise, please adjust so that we can get a better idea of what the team goal is. Thanks to you all and please keep checking the blog for weekly updates!

Carrier Screening for Cystic Fibrosis (CF)

After posting the previous, I realized that some of you reading may have questions regarding the process for carrier screening for CF. I found this information on the March of Dimes website, and thought it may explain the process a little clearer.

For those of you who don't know, Mandy and I will be walking in the March for Babies tomorrow morning. We are walking for Team Brangelina. Andrea the mother of two little wonders (Bradyn & Angelina) is Scott's cousin. They were born January 19, 2007 @ 27 weeks gestation - they both have beat many odds in the last year and continue to thrive. We walk tomorrow in honor of them and their fight, but also for all the past, present and future babies that are born fighting for their life.
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Carrier Screening for Cystic Fibrosis (CF)

Cystic fibrosis (CF) is a genetic (inherited) disease. About 30,000 children and adults in the United States have the disorder. Cystic fibrosis severely affects breathing and digestion. It is caused by an abnormal gene that makes the body produce thick mucus in the lungs. This mucus promotes infections that are often life threatening. In the pancreas, similar thick secretions can lead to serious problems with food absorption. People with CF usually survive into their 30s. Researchers continue to search for more effective CF treatments as well as a cure.

CF carrier testing is a blood or saliva test. It checks to see if parents-to-be have (carry) the abnormal gene that causes CF. The test can help determine if you're at increased risk for having a child with CF.

The only way to get CF is to have two genes that cause CF—one from your mother and one from your father. This means that both parents are CF carriers. A CF carrier has only one CF gene and has no CF symptoms. You could inherit the CF gene from one of your parents and never even know it.

If only one parent from a couple is a CF carrier, none of the children will have CF. But there is a 50-50 chance that each child will be a symptomless carrier.

When both parents carry the CF gene, there is a 25% chance (1 in 4) that their child will have CF. There is a 50-50 chance that the child will be a carrier like the parents. And there is a 25% chance that the baby will not have the gene—not a carrier and not have the disease.

Are You or Your Baby's Father Likely to be a CF Carrier?

Approximately 1 in 30 Americans is a symptomless carrier of the CF gene. If you have a family history of CF, you're more likely to carry the gene than someone from an unaffected family.

The risk is increased if you're of Caucasian background. If so, you have a 1-in-29 chance of carrying the gene, compared to 1-in-46 for people of Latino background, 1-in-65 for African-Americans, and 1-in-90 for Asian-Americans.

Remember that the only way you can pass CF to your baby is if both you and the baby's father have the CF gene. Luckily, this is pretty rare.

If test results show that both parents are CF carriers, your health care provider can test the baby in utero. If the baby has CF, parents can take time before delivery to learn more about the disease and find appropriate specialists.

The American College of Obstetricians and Gynecologists (ACOG) recommends that health care providers make the CF carrier screening test available to all couples. Deciding whether or not to have the test is your own personal choice. Talk it over with your partner and with your health care provider and get as much information as you need to decide what's right for you and your baby.

Thoughts on CF and Love!

November 27th 2007, was the first time I held my precious niece Jolie Cate Blankenship for the first time. Seeing the amazing gift of life before my eyes and her taking her first breath, helped me realize just how much love a child can bring forth in a family. I love her as she was mine, and am so amazed to see the transformation that Mandy has made into a Mommy, she is truly amazing. My point of the story is some of you may not know that when Mandy found out she was pregnant, she under went several blood tests, not to uncommon. One of those being the test to see if she was a carrier of CF. With having a family member so close in the blood line having CF, the doctor said it was a must that she get tested. After the results came back, our family went through a brief period of time of shock, Mandy was a carrier of CF. Needless to say she was a mess, along with me by her side. Being an identical twin, there is no doubt that I myself am also a carrier. The next step, test Scott! So Scott gets in the next day and gives his blood, results come back, and Scott tests negative. There is no way that the child growing inside Mandy could have any chance of having CF...sigh of relief! At this time I remember asking Mandy if it would have mattered, and she came back with only one reply, absolutely not! I have been asked before if it scared me knowing that I was a carrier and if there were a chance that my "future" child could get CF if I would decide to not have kids. My only answer is, absolutely not! Although it is a horrible disease and I without a doubt would never wish a child to live with it, it would never alter my decision to become a mother. I see the way Mandy looks at Jolie and that kind of love is falter proof. I see the strength that my mom endured during the course of my brothers illness and she truly is the most amazing woman and mother.

There's a term in astrology, "Fixed Stars," which (from the Latin stellae fixae) are celestial objects that do not seem to move in relation to the other stars of the night sky. Some of the Fixed Stars near the ecliptic and of significant magnitude do, however, exert considerable influence. The images on which our Zodiac is based are of course patterns drawn from constellations of Fixed Stars, but the constellations are not exactly the same as the Signs of the Zodiac. Since I remember, it has always been 4 Stars...My Fixed Stars...Bubba, Mom, Mandy, and Myself. Although our life's have been altered with finding love, marriage, and children, I always count on My Fixed Stars to guide me through life. I owe so much of the person I have become, to them, and I am forever thankful for the earthly family I was blessed with. I know without a doubt that they will always be constant in my life! Now with the new addition of Jolie Cate, our worlds are overflowing with love and joy!

So you may ask the reason of this post and where I'm going with it. As you have read, CF has always been apart of our lives and we will always remember the bond that it has blessed our family with. I have realized just how sweet life is and how everyday is so very precious, so although we all have our struggles and fair share of sadness there is always a brighter side of the situation. Love...is what carries you through life, so if you have it, grab a hold of it, and cherish it! I know that I have!

Becoming an Organ Donor

It is a quick and simple process that could change the life of up to 7 deserving people, and many many more if you throw in the family, friends and loved one's of the patients. I know some may think of it as morbid and not necessary, but the thought of my organs and tissues possibly saving the life of another human, is the most awesome gift I could ever think about blessing someone and their family with. Please if you aren't already, become a donor and help save the life of someone who has a chance of inspiring to live a long and healthy life. Click here to become a donor.

Proof that Organ Donations and Transplants actually change lives...Tricia whom we've mentioned in previous posts, is now holding baby Gwyneth for the first time with no vent and less CF lungs! How amazing is that!!! Thank you Nate & Tricia for sharing your beautiful journey with all of us here in Bloggerland...you guys are truly an inspiration...keep up the fight!!!

Prayer Request

Please keep Tricia, Nate, and Gwyneth in your thoughts and most importantly your prayers. Tricia is currently in the OR undergoing a double lung transplant...may God keep her safe while she is in surgery and bring her out breathing like she never has before. We are praying for you here in Texas!

To stay updated visit CF Husband.

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.