Jeff's Entourage

Namesake...Jeffory...

2011-02-18T09:15:00.000-08:00

February 15th, 2011 at 2:18 pm our family gained it's second Jeffory...and we know a Jeffory was smiling down from up above.

My sister Mandy gave birth to her 3rd child Jeffory Nolan Blankenship, 8.5 lbs and 20.5 inches long, this bundle of joy is the light of our worlds, along with his two sisters Joile and Nina.

Congrats to the Blankenship Family...I love you all more than words!

Nathan, Tricia and Gwyneth Lawrenson

2010-09-10T08:34:00.000-07:00

What an inspiration Tricia is...and what a beautiful family...love how they have persevered through so many obstacles and are still wearing AWESOME smiles!

Upcoming Events...

2010-08-11T07:01:00.000-07:00

Come out and support Cystic Fibrosis and help us make CF stand for Cure Found...

We have 2 exciting events coming up in the next few weeks...

August 18th, Chili's Give Back Day, print the coupon below and take in to any of the 26 participating locations and have the waiter attach to your receipt from the meal and 10% of the ticket will come back to the NE TX Chapter - Ft.Worth Office and will benefit our local Cystic Fibrosis Pulmonary Care Clinic located at Cook Children’s Medical Center, where hundreds of North Texas CF patients are treated each year, with the newest treatments and best CF medications as they become available, and to assist in financially support the efforts of the national researchers that are working to find the cure for cystic fibrosis, and developing new treatments to help those who suffer with this devastating disease.

September 2nd, Benefit Happy Hour and Concert, The CFF NE TX Chapter - FTW Office and BlackFinn American Saloon in Arlington Highlands will be joining forces on Thursday, Sept. 2nd from 5:00 - 8:00 PM to raise funds to help the CFF at adding tomorrows every day.

Please come out and support the Chili's and BlackFinn Give Backs...and let's give back to our local Cook Children's CF Pulmonary Care Clinic!

I've Been Bad...

2010-07-28T20:29:00.000-07:00

Seriously...am I the only one who gets home from work and asks..."where did the day go?" I've been so consumed with the learning process of my new job, that I've failed at the other activities that used to keep me sane...like my blogging. As you all know I'm now an employee of the Cystic Fibrosis Foundation, and I can now say,"Working at my dream job!" Don't get me wrong...I do miss the daily hussle and bussle with my Posse, but I'm doing something that makes me smile every morning on the way in to the office, which I know in the long run is the most important thing for me as an individual. This post is just a reminder to all that even though I'm working for the CFF as an employee first, I still 100% intend on keeping up with my fundraising efforts for Jeff's Entourage, and still will continue the role as team leader, of course with my main co-leaders Mandy and Mom.

We are still going to be continuing the annual concert in the spring and I will periodically post upcoming CFF events on the blog to keep all my readers abreast of the event calendar. Speaking of...I've included that with this post...if any one is interested in any of the events or have any questions please feel free to contact me at srelien@cff.org.

Sixty-Five Roses
10th Annual Golf Tournament
Golf Link to Chapter Website
September 13, 2010
Join the Cystic Fibrosis Foundation for the
10th Annual 65 Roses Golf Tournament
at Mira Vista Country Club. This 1st class
tournament will consist of four-person teams,
best ball format. Sponsors receive player
gift packages, pre-tournament couples
reception and dinner*, lunch, GREY GOOSE
cocktails, gift bags and awards reception.
*Limited to $3,000+ sponsorship levels.
For more information please contact
Beverly James at 817-249-7744 or
via email at bjames@cff.org

10th Annual 65 Roses Wine & Food Extravaganza
Food & Wine Link to Chapter Website
October 27, 2010
Held under the stars at La Paloma, this 10th
Annual event will feature our area’s most
renowned chefs, presenting their signature dishes
complimented with exceptional wines chosen
especially for this event. Enjoy the
sounds of Texas Artists while bidding on the
live, silent, and big board auctions.
For more information please contact
Melanie Hanna at 817-249-7744 or
via email at mhanna@cff.org

Inaugural CF Climb for Life
CF Climb for Life Link to Chapter Website
November 13, 2010
The Climb for Life is a fun and challenging event where people will huff and puff their way to the of 22 floors of the Burnett Plaza building for a great cause. It is more than your typical 5K. Whether climbing for a winning time or simply to cross the finish line….this event is a great way to challenge yourself. You can set your own challenge but more importantly, you’ll share in the victoryand in the fight in finding a cure for Cystic Fibrosis.

Registration Fees:
06.01.2010 - 09.30.2010 $25
10.01.2010 - 10.31.2010 $30
11.01.2010 - 11.10.2010 $35

Minimum Pledge Requirement: $150

To register for this event visit www.CFF.org/Chapters/FortWorth or call 817.249.7744

Sponsorship opportunities available.

XOXO ~ S

A loss for words...

2010-06-28T13:36:00.000-07:00

As I sat back this morning with my breakfast and decided that I'd brave Sarah's newest post over at Not so Bright and Shiny...I wondered...how she sat down and did this...so fresh and new on her heart...the day we lost my brother is a day I'll never forget...much of the stuff she described...well we went through it too...sure we were in the confines of a hospital room...but all of the very same stuff happened...Family and Friends coming to say their last goodbyes (at that point I was in shock and pretty numb as to what was happening around me), Doctors and Nurses saying their goodbyes too, not doing much for him except monitoring his pain...A few days prior to Bubba's passing when he was still lucid enough to talk or was it his previous hospital stay a few weeks prior, again kind of blurry...he asked our very dear friend (Vanessa) to sing at his funeral (a particular song, In the Arms of the Angel by Sarah McLaughlin)...how did my sweet friend sit there and take that request at such a young and venerable age...I mean at 18 it is a lot to take on something like that...but she did it with grace and a proudness and I'm forever grateful for this request and she did him so proud at his funeral. I remember Sam, Lisa and I spending the night up at the hospital the night before his passing or was it 2 nights before...that week seemed to all run together...we were so uncomfortable...but weren't...we were there for a reason (To be with our Brother and that made all of our discomfort go away...how could we be uncomfortable while watching him, seriously?!?!?) I remember his last breath here on this Earth...I remember all of us surrounding his bedside touching and caressing him...I remember screaming at the top of my lungs "NOOOOOOOOOOOOOO" when it really happened...HOW DID THIS REALLY HAPPEN??? was what was going through my mind?!?! Where did my laughing - smiling brother, friend, hero GO? I remember making the call to the love of my life that couldn't be there because he was away to college and telling him that my Bubba was GONE...he was GONE...I remember him showing up the next day to be with me and my family...After I saw him I knew things would be ok and that he would take my brother's role forever as my protector...he has done my brother proud. Why am I writing this...I really don't know...except that I'm not quite sure I've every expressed all of this in words...I kind of went numb after it all happened and sure I've talked about him and love him more now then ever...if that is even possible...but I just want him to know I'm safe and that he is never out of my mind or heart...he is always in my thoughts and prayers and Jolie knows and talks to him at prayer time just like Nina and all of our children will one day when they are able to understand a little more...Uncle Bubba would have loved these girls with all of his heart...they would have been his everything...just like I know Sam and I were to him...the love he had for us was just something that is unexplainable...and I Thank God everyday that I know what that Love is...Everyone should be loved how he loved US...

Ok enough blabber from me...I was able to stomach one bite of my toast this morning while reading Conner's last song...Like Vanessa sang at Bubba's service...In the arms of the angels....Fly away from here...you will forever be in our hearts Connerman!!! Tell my Bubba I love him and miss him!!!

{Mandy}

Damn You CF!!!

2010-06-24T13:15:00.000-07:00

WHY?!?!? Seriously!!! I Hate you CF!!! Please keep Conner in your thoughts and prayers...he is losing his fight with CF...it breaks my heart that another family has to lose a precious life to this stupid disease...Conner you have touched all of our hearts...I want to Thank You for that!!! Breathe easy little guy...

http://notsobrightandshiny.blogspot.com/

Lift this family up in Prayer...

2010-06-01T15:49:00.000-07:00

This is a blog I found a few months back and I just can't believe that they are going through this...I hate it...This little boy "Conner" has so much life to live and this young family deserves all the time in the world with their 3 boys...her last few post pretty much sums up what it's like going through the steps and motions of losing a loved one...I wasn't the mother of a CF'er, but I was a sibling and bestfriend to one and this is exactly some of the feelings I struggled with then and even still now and I know my Mom can relate to all of this...I just thought if I pointed some of you that way that you could send a few extra prayers up for Conner and his family while they go down this path. He made the decision a few weeks back that he was done with the hospitals and IV's...so they are honoring his wishes...what a brave little soul and brave family!!!

Not so Bright and Shiny

Thanks...Mandy

2010 Texas Rose Round-Up

2010-05-21T13:47:00.000-07:00

There are still tickets available...come join the Bart Crow Band, Stoney LaRue, Cross Canadian Ragweed...and of course, the CF Foundation!

For tickets and directions please visit www.fortworth.cff.org, and click on 2010 Texas Rose Round-Up. Make sure and bring you lawn chairs, blankets, and coolers. We'll see you out there yall!

GODSPEED BENEFIT CONCERT

2010-05-06T07:25:00.000-07:00

The Total is in...

2010-04-30T13:17:00.000-07:00

Minus our money from J.Gilligan's the 2nd Annual Jeff's Entourage made $2345.00. Special thanks to all the supporters, volunteers, etc. We made some awesome cash flow towards making CF stand for Cure Found!

Jeff’s Entourage 2nd Annual Benefit Concert

2010-04-22T08:56:00.000-07:00

J.Gilligan's
400 E. Abram
Arlington, TX

Doors Open - 1:00 PM

Band Line-Up:
1:15 PM - Mo Robson Band
2:15 PM - 17 Hands High
3:15 PM - Special Guest Singer
3:30 PM - Grant Jones and the Pistol Grip Lassos

With Raffle/Doors Prizes announced through out the afternoon. Live Auction to take place prior to Grant Jones and the Pistol Grip Lassos taking the stage. Silent Auction to close at 4:00 PM.

Silent Auction Items *
• Radney Foster Memory Box – Value $ Priceless
• Sosobella Godspeed Necklace – Value $50.00
• 4 tickets to Willie’s 4th of July Picnic – Value $400.00
• Tribute Golf Course (One round of Golf for 4) – Value $500.00
• Downtown Ft.Worth Package – Value $500
o Overnight Stay for 2 at Omni Hotel
o Dinner for 2 at Reata
o Two tickets for Four Day Weekend
• Lightcatcher Wine Tasting Basket – Value $60.00
• Framed Art by ATOY Photography – Value $250.00
• ATOY Photography 1 Hour Photo Sitting with one 8 x 10 Print – Value $150.00
• Original Art by Yvonne4Eyes – Value $60.00
• 2 tickets to Dallas Symphony – Value $130.00
• Dr.Kelly West DDS - New Patient Cleaning, Exam, Full Series X-Rays, take home whitening with custom made trays. Value - $600.00

Raffle Items *
• Pampered Chef Grilling Basket Gift Set – Value $50.00
• Ultimate Keurig Coffee Maker – Value $130.00
• 32 GB iPod Touch – Value $300.00
• (2 available) Softside Frost Bank Collapsible Coolers – Value $30.00 each
• (2 available) Grill Utensils Sets in Foldable Frost Bank Carrier – Value $40.00 each
• O’Reilly’s AC Delco 2 Ton Hydraulic Jack and Jack Stand Kit – Value $50.00

Door Prizes *
• 4 tickets to Gilley’s in Dallas – Value $85.00
• American Express Credit Card – Value $100.00
• (2 available) Stainless Frost Bank Coffee Thermos Sets – Value $35.00 each
• O’Reilly’s Car Wash Kit – Value $35.00
• Uppercase Living Home Décor – Value $25.00

Live Auction *
• Autographed Help Austin Help Haiti Acoustic Guitar – Value $ Priceless
• Tanning Bed Sun Ergoline Model is Sundash Competition – Value $2,000.00

*current at print date

Live Auction Items

2010-04-22T08:09:00.000-07:00

*Live Auction*

Here is a little preview of the items that will be available in the Live Auction.

Live Auction will start at 3:00 PM
(prior to Grant Jones and the Pistol Grip Lassos set)

* Autographed Acoustic Guitar -
Donated on behalf of the artists at the Help Austin Help Haiti Benefit Concert.
Includes the following autographs: Ray Benson, Asleep at the Wheel, Robert Earl Keen, Reckless Kelly, Joe Ely, Jimmy Dale Gilmore, Butch Cochran, Shawn Colvin, The Gourds, Band of Heathens, Ray Wylie Hubbard, Bruce Robison, Kelly Willis, Lloyd Maines, Curtis Potter, and Radney Foster. Value - Priceless

Tanning Bed - Sun Ergoline Model is Sundash Competition
Donated on behalf of Electric Sun
Value - $2,000.00
Specifications:
• 32 new Genesis 120 watt lamps with 11 new hrf 25 watt facials
• 20-min bed.
• Electrical spec: 4 wire 220v, 30amp breaker (an Electrician will need to connect to the wall)
• Free Delivery within 30 miles
• 90 Day Warranty on Parts & Service
• If you should have any questions regarding the tanning bed, please ask to speak with Rod Slack.

*Silent Auction will close at 4:00 PM, please come by and check your bids at this time and confirm if you are the lucky winner.

Where did our time go... (a post from Mom)

2010-04-20T18:46:00.001-07:00

I’ve been going through a box of old pictures and the last ten years this task has proved to the hardest thing in my life that I do. It is both a blessing and a curse. A blessing because it gives me special time to reflect on not only your life but mine also. A curse because when I am through, it is all I can do to make it through the rest of the day without a huge “Bubba Cry Session”.

I’ve tried to stay strong for the girls when in fact a lot of the time I am falling apart inside I am so lonely without you. It was so special “growing up” together. It was quite a ride and yes, there are so many times and things that I would like to have a “do over” on but I know that is not possible; at least not in this life.

Jeffory as we get ready to start our intense effort to raise money for CF this year, please know it is all for you. I know you are happy and out of pain because you have told me on several occasions but it doesn’t ease the pain I feel as a mother that lost her baby. A part of me will forever be missing.

Just know that everything we do, we do for you. Godspeed little man, sweet dreams.

Love, Mom

Make an on-line slide show at www.OneTrueMedia.com

(make sure and pause playlist at bottom of blog for music)

JE 2nd Annual Benefit Concert

2010-04-20T07:43:00.001-07:00

Look forward to seeing everyone this Saturday...we have a lot of exciting auction items, raffle prizes, and door prizes! Will post a firm list of all of this information toward the end of the week...Stay Tuned!

Live music from Grant Jones and the Pistol Grip Lassos, with guests Mo Robson and 17 Hands High...and a special performance from Vanessa Lozada. You don't want to miss it!

Good News...

2010-04-13T05:45:00.000-07:00

I officially will be working direct for the Cystic Fibrosis Foundation starting May 3rd...I'm nervous, excited, anxious, etc. all at the same time. Having been working for the same company for the last 8 1/2 years has me in my comfort zone, but I know I made the right decision for me, and I will be doing something I'm passionate about. My new title will be Special Event Specialists...something I have always had a desire to do...and now I will be doing it on a daily basis for an organization that I deeply care about. So Bubba, I begin this journey with your support and guidance...without you I would not be making this step!

Why We Fundraise? (Up Close & Personal)

2010-04-08T09:27:00.000-07:00

My Mother's Reason
My name is Shirley Relien and I lost my 26 year old son Jeff in the fall of 2000 to Cystic Fibrosis. You may or may not be familiar with this dreadful childhood disease but Jeff was diagnosed at the age of 6 weeks with CF. I was a 20 year old girl that could barely say Cystic Fibrosis much less know what all it involved. So, as you can imagine our world seemed to fall apart for quite sometime. In 1974 the life expectancy was 12 years and we were told to take him home and love him as we had no guarantees as to how long he would survive.

Through the years with new drugs, research and the possibility of a transplant, things seemed to look up. But once again our world fell apart on September 22, 2000.

I made a commitment to myself and my son that I will continue as long as I am physically and mentally able or until a cure is found to raise money for the Cystic Fibrosis Foundation. It is my hope that one day no family will have to endure losing a son, brother and husband with so much life ahead of him.

Jeffory, as we get ready to start our intense effort to raise money for CF this year please know it is all for you.

My Sister's Reason
It has been almost 10 years since we lost my Bubba to his long battle with CF, and it still kills me to talk about him in the past tense. If I would have realized what was REALLY going on the weeks/days prior to his passing I would have shared many of my fears, jokes, and stories with him. I would have loved to hear his laugh one more time. He had an electric laugh that was ‘one of a kind’. That is one of the many reasons why I fundraise towards a cure for this nasty disease. So that another mother, wife, sister, daughter doesn’t have to lose a loved one that still had so much life to live. So that a mom can see her son smile with his one chipped tooth - So that a husband can tell his wife his endless collection of jokes - So that a brother can protect his sisters. I feel my brother’s presence here on earth; I see his smiles in my children’s eyes. I know he is with me, and that comforts me and encourages me towards my goals every year that I set in my Great Strides endeavors. He is my Hero; my Guardian Angel and I love him more than any words could ever describe. He was a true gem!!! This is why I fight…so that CF stands for a “Cure Found”!!!

My Reason
My brother, Jeffory “Bubba” Duane Smith touched anyone who ever came in contact with him, and he continues to touch people with his spirit. This year marks the 10th year of his passing, and I will tell you that it still feels like yesterday we were saying good-bye to him in the hospital. It was a very surreal moment in life, which no one can understand until they experience it themselves. Watching someone you love so dearly slip away right before your eyes is one of the most painful experiences I've ever been through. Then the aftermath...well, it was hard. But, we picked ourselves up for him...and started honoring his memory, because that is what he would want us to do.

Another reason I fight for this cause is because I know that I'm a carrier of the CF gene...when my identical twin sister got pregnant with her first child, she immediately knew that she should get tested, and that's when we found out that we also carried the gene that our mother does. Fortunately my brother in law doesn't...so...long story short, it was a relief to us all. But, I now know that in the future I too will have to go through the same trials and tribulation to find out if my future husband carries the gene. I have thought about it long and hard, being 27 and always knowing that I would want to be a mother, if there were a chance that my child would have CF, would I proceed with getting pregnant? The question is still unanswered, it was hard watching my mom go through what she did, but I know her love for him could conquer all, and that's the main reason I think I would still take a chance. Motherhood seems to be the most rewarding career anyone could ever have, and to have a bond with my children like my mom has with us, well I guess you could say that it’s pretty rare and really unique. So a cure for Cystic Fibrosis is very important to me, and that’s why I fight to raise the money for the best research to help find it.

In 2009, I decided that I was ready to take the plunge for our team and head up the first benefit concert in memory of my brother, and it was a success. We raised $5,000on April 17th, 2009 on a Friday evening with 3 bands, silent auction, and raffle. Thanks to Randy Ford, owner of J.Gilligan’s and Beverly James, with the Cystic Fibrosis Foundation, I gained the confidence I needed to make this an Annual Event. So in 2010, our goal is to raise $10,000 with the concert event to benefit the Cystic Fibrosis Foundation, Great Strides, and Jeff’s Entourage. To make CF stand for Cure Found!

Mark the Calendar...

2010-03-31T07:53:00.000-07:00

I'm an Organ Donor...and Damn Proud of It!

2010-03-29T10:52:00.000-07:00

One of the most important things to CFers and their families...are viable/available LUNGS...when my brother was placed on the transplant list in 1999 it gave us HOPE...I became a donor and from then on I have realized the importance of HOPE and FAITH, Bubba didn't make it to transplant, but he believed in the process, and held on as long as he could...

Organ Donors, are few and far between and these are just a few questions I have for you?

Did you know that more than 96,000 men, women and children currently need life-saving organ transplants? and 7,000 of them live in the state of Texas?

That every 11-13 minutes another name is added to the national organ transplant waiting list?

That an average of 18 people die each day from the lack of available organs for transplant?

That in 2008, there were 7,984 deceased organ donors and 6,218 living organ donors resulting in 27,961 organ transplants?

That in 2007, approximately 30,000 grafts were made available for transplant by eye banks within the United States?

Sad Statistics...

According to research, 98% of all adults have heard about organ donation and 86% have heard of tissue donation.

90% of Americans say they support donation, but only 30% know the essential steps to take to be a donor.

There is an an estimated 24.8 million citizens in the state of Texas, and only 653,940 registered donors, which is about 38% of the population.

My Chanllege to all my readers is to become a donor today...and know that if in the event you could have the ability to give the "Gift of Life" and save or improve the lives of as many as 50 people. Please visit Donate Life Texas, and become a donor today!

A Sad Day...

2010-03-27T16:29:00.000-07:00

thinking of you all at this time...with deepest and most sincere sympathy...thank you Eva for sharing your life with us all...your story has impacted the world...your legacy will continue, and you will never be forgotten...with a heavy heart...from, your friend in TX...Samantha Relien (www.jeffsentourage.blogspot.com)

A Night to Remember...

2010-03-22T08:58:00.000-07:00

Jam Session
Michael Thomson of Michael's Restaurant, Ft.Worth.
With Pat and Patrick Davis
Meeting Pat for the 1st time...after being a fan for a good 10 years +!

John Mayer Review

2010-03-10T06:01:00.000-08:00

The highlight of last nights show for me was hearing John sing Fleetwood Mac...this is from a previous concert, that I found on YouTube...wish my camera quality would have been better b/c I would have used my video. John Mayer...WoW...what a musician...what a great show...what great friends...a night I will never forget! His rendition of "Dreams" left all speechless and longing for more.

Thank you Tammy for sharing the tickets with your sisters...we had a blast!

3rd Band Added to the Line-up

2010-03-05T06:54:00.000-08:00

I just received notification that 17 Hands High will join the line-up again this year. I've had my fingers crossed that they would accept my offer and after a week of patiently waiting for the word, I received it this morning...thanks George! Just wanted to share that with all my readers.

I'm going to leave you with a few photos from last years concert...I'm so ready for our 2nd Annual...and patio drinking with all the people I love, honoring one of the most dearest things in my life...we do it for you Bubba!

Awesome Tribute Song

2010-02-23T06:34:00.000-08:00

We (me, Mom, and Mandy) first heard this song on XM Highway 16 driving in to work one morning and you can imagine the condition of our eyes once we arrived at work. This is a very sincere tribute about a person who lost their life to CF, and I listen to it and smile and think of all the good times that we had!

Best Tribute Song
"Hey Jordan" by Dierks Bentley
From the Phoenix New Times (Best of 2009)

Throughout his decade-long career as a guitar-wielding country music star, Phoenix native (and Capitol Records artist) Dierks Bentley has penned many a heartfelt song for his fans. There's "My Last Name," an emotional number from his 2003 self-titled album in which he sings about his family's history and legacy, or "I Can't Forget Her," an aching and remorseful post-mortem of a broken relationship. But Bentley's most poignant and personal song, by far, to date is "Hey, Jordan," an upbeat and soulful acoustic ballad that's laced with melancholy and sorrow over the loss of Jordan Sterling, a lifelong friend and fellow Valley native who passed away in January at the age of 34. Sterling had spent his entire life battling cystic fibrosis (as had his sister Brooke) but took a turn for the worst last year after doctors accidentally pierced an artery near his lung. Bentley wrote the song as a tribute after Sterling's death, encapsulating his memories and feelings for his fallen friend in such lines as, "Hey, Jordan, do you remember all the good time we both had? / Hey, Jordan, it made me so happy, and oh so sad." He sung it at Jordan's funeral and publicly debuted it at this year's Last Call Ball at The Cannery Ballroom in Nashville, bringing a tear to the eye of many of his fans in attendance. Sterling's family was also touched by the song, as evidenced by comments left by a relative on its YouTube page: "This song is about my cousin! It's awesome that Dierks has taken [it] to the world. It was amazing to have him sing this song at the funeral." We're certain that wherever he is now, Jordan enjoyed hearing the song, too.

2nd Band Confirmed -- Mo Robson

2010-02-18T08:33:00.000-08:00

I received notification from Mo Robson Band that they will be able to perform an acoustic set at the Benefit Concert...I'm really excited about their addition to the line-up. For those of you who are interested in hearing their music please visit their website, and please stay tuned for more exciting details for the concert coming soon.

Taking a Step

2010-02-16T07:53:00.000-08:00

Thinking of Eva...her story has inspired me to take the next next step towards my dreams. So this is me encouraging all my readers to do the same...you only get one chance...and I want to live BOLD...HAPPY...and with NO REGRETS! I've realized that without risks there really are no rewards. So this is my way of honoring Eva and Bubba...today I have taken a step towards my dreams!

Prayers for Eva

2010-02-15T09:31:00.000-08:00

I'm typing this post in sadness, searching for the words to make since of all this. A transplant is supposed to make things all better...but another CFer is struggling for breath. I have been following Eva's blog closely, she has become one of my inspirations guiding me in my fundraising efforts, and it saddens me that she is preparing for a farewell. The only things I can deep down think is that heaven will be welcoming home an Angel, but my selfishness thinks, she is too young...too beautiful...too loving...this isn't fair. So with a heavy heart, please please please keep Eva, her family and friends in your thoughts and prayers...With my deepest love and gratitude thanks for sharing your life and spirit with us all Eva!

Austin Video

2010-02-03T12:16:00.001-08:00

Austin Music Hall Haiti Relief Concert & Silent Auction Guitars

2010-02-03T10:36:00.001-08:00

Well as most of you know last year we auctioned off an autographed Pat Green guitar for $1,000 at our 65 Roses Benefit Concert...this year we are pleased to announce the additions of 2 autographed guitars which were personally signed by each artist present at the Austin Music Hall Haiti Relief Concert. Jeff's Entourage member Shirley Relien "Mom" went down to Austin on Sunday January 24th with high hopes of retrieving one guitar for our auction. She returned back with "3" (one being hers for personal gratification). So from the bottom of my heart, I want to thank all the artist who took the time to learn about our cause and talk with mom about our story. This was definitely a highlight event for us all...and even though I wasn't there in physical form I was in spirit, and I know Bubba was for sure.

Thank you Austin Artists and Real Country Entertainment!

Grant Jones & The Pistol Grip Lassos

2010-02-03T07:51:00.000-08:00

Will be performing this Friday (2/5/2010) night at Lola's in the Stockyard's...come enjoy great music and support our headline band for the upcoming 2nd Annual 65 Roses Benefit Concert, which will be held on April 24th at J.Gilligan's...please mark your calendars!

To read more about this Friday nights event please visit, Art and Seek!

Also, I'd like to take this time to Congratulate Grant and the band on their awesome achievement of snagging the Shiner Records Rising Star Competition in October of 2009! We are honored to have you return this year and support our cause!

The Holiday's

2009-12-23T09:07:00.000-08:00

Today as I sat waiting for a pick-up order at Cracker Barrel for our 4th Annual Christmas breakfast for work...I calculated this Christmas as the 10th we have had missing a very special person in our family. I talked with Jolie while we were there and she assured me that "Uncle Bubba is watching us from Heaven"...it made me smile...we miss you Bubba...not a day goes by that I don't cherish the memories we made and find peace knowing that you are smiling upon us with Papaw, Justin, Jasmin, and Gerty...and many many more great souls that are not with us anymore here on earth.

I wanted to share 2 pictures of me with my nieces...the two sweetest girls I know. (Thanks Aunt Kay for grabbing the "All I Want for Christmas is My Auntie" shirts. They were a hit!

Someone in Canada Sporting JE Gear...

2009-12-11T06:24:00.000-08:00

That's right...we have gone international!

Above on the right is Eva...sporting our 2007 Great Strides shirt, with Bubba's Rules of Life on the back. She has become an inpiration to me, and her journey is a miracle. She is the REAL DEAL, and just like Bubba did, rolls with every single punch, not taking a day for granted. This is what I adore of you Eva, and why I follow your blog daily. I wish you and my brother had the opportunity to meet, I know you would have been great friends. I feel honored to be able to read your story daily and know that you are smiling in Canada, despite your pitfalls, you are a FIGHTER!

To learn more about Eva and to follow along with her journey...you may want to start with these few entries...about CF and transplant.

65 Roses 9th Annual Golf Tournament Dinner

2009-10-15T07:58:00.000-07:00

October 11th, 2009 marked the 9th Annual 65 Roses Golf Tournament Dinner at Lambert's in Fort Worth. Once again the food was excellent and the gals from the CFF did an awesome job to pull everything to together. Here are a few pictures from the event. Hope to be attending the 10th Annual 65 Roses Wine and Food Extravaganza next week...so stay tuned for more stories and pictures.

Ocotber 12th, 2009 was the Golf Tournament hosted by Mira Vista Golf Course, the weather was a little yucky, but overall cooperated, to see the teams through to the end of the day. Mom and I had a lovely time helping the CFF gals, and missed Mandy to pieces. Once, I know totals raised I will get those posted.

Stay tuned for upcoming news and events...we will be having the 2nd Annual Jeff's Entourage Benefit Concert this year...sometime in mid April, proceeds to go towards our Great Strides Walk.

Great Strides 2009

2009-06-12T07:06:00.000-07:00

The Total is In!

2009-06-11T10:37:00.000-07:00

Jeff's Entourage raised an outstanding and amazing total of $10,635.00 to go towards Cystic Fibrosis research and education...what an accomplishment we achieved this year. Huge thanks goes out to all whom raised money, walked, and supported the team this year! I know Bubba is smiling down from heaven...and is so PROUD!

Pictures to come!

5 Days and Counting...

2009-06-02T14:20:00.000-07:00

I can hardly believe that walk day is so near...seems like yesterday I was just sending out the initial email to get our walkers signed up. Wow, what a journey Jeff's Entourage has had this year...we are so close to our $10,000 goal...and I'm optimistic that we will reach it!

Please stay tuned for a post on Thursday 6/4/09...this will be an opportunity for team members to help us reach our goal!

A Success!!! And Thank You's!

2009-04-20T12:36:00.000-07:00

Jeff's Entourage hosted it's very first benefit concert April 17th, 2009. It was indeed a success. Thanks to J.Gilligan's for donating the perfect venue, and to Grant Jones and the Pistol Grip Lassos, as well as opener 17 Hands High, we raised a total of $4,684.00 for our team.

Pictures from the event for your viewing pleasure! Thanks Mandy for taking care of this for me, and all the candid shots, they are awesome!

A thank you goes out to Electric Sun and Rod Slack for your generous donation and the Live Auction tanning bed that went for $1,300...thank you again from the bottom of my heart!

Beer?

Huge Thanks to Beverly for her guidance through planning this event, and for Laura being there to enjoy the event. You ladies ROCK!

My TCU volunteers...minus 2, manning the silent auction. Thanks for your help guys!

Brandon & Leann

Rod & Ali

Tara, Lisa, & Shelly

Nothing but Good Times!

And Twins!

Silent Auction Big Board

Bob Austin - the lucky winner of the Pat Green guitar...went for $1,000...what an awesome contribution to the CFF!

Displayed Pat Green Guitar -- Thank you to Jon Hellberg for making this happen!

Thanks for being there Farrel, it was awesome having you as a guest speaker, you did awesome!

Me, Farrel, and Mandy

Sam D. & Vanessa

Me with My Awesome BF...special thanks to Drew for putting up with me while I was getting all this together...I know I can be a handful, but with you by myside I seem to stay pretty grounded. Thank you for keeping me sane...I love you babe!

New Friend's at J.Gilligan's

The Group

Headliner - Grant Jones & The Pistol Grip Lassos

17 Hands High

Thanks to all who were able to attend, and for those of you who couldn't but sent donations and well wishes in your place. It was very much appreciated, and I couldn't have pulled it off without all of your support!

Cystic Fibrosis Documentary Film

2009-04-15T10:52:00.000-07:00

We have followed Eva off and on since we started this blog, 2 years ago. Now in the very near future there will be a documentary of her journey with CF and Double Lung Transplantation being shown at the largest documentary film festival in North America, Toronto's Hot Docs! The trailer for the film has been released, and I wanted to share it with you all.

Spread the word and raise awareness - a true tribute to the power of film and the internet!

Redefining the traditional scope of documentary film in an electronic age, 65_RedRoses leaves viewers with a new appreciation of life and the digital world. This personal and touching journey takes an unflinching look into the lives of Eva Markvoort and her two online friends who are all battling Cystic Fibrosis (CF) - a fatal genetic disease affecting the lungs and digestive system.

Unable to meet in person because of the spread of infections and super bugs, the girls have become each other's lifelines through the Internet, providing unconditional love, support and understanding long after visiting hours are over. Now at a critical turning point in their lives, the film travels the distance the friends cannot go themselves, capturing the compelling and often heartbreaking realities they face, just trying to take each breath.

Get involved by joining the facebook group at

http://www.facebook.com/group.php?gid=60310687919

Your support will help bring this film to a theatre near you!

2009-04-15T07:52:00.000-07:00

J.Gilligan's
(http://www.jgilligans.com/music-calendar.html)
400 E. Abrams
Arlington, TX 76010

Opening Band - 17 Hands High

Headlining - Grant Jones and the Pistol Grip Lassos

Cover $5.00 per person

Raffle Tickets - 1 for $5.00 or 5 for $20.00

LIVE AUCTION **Exclusive**
***We will be auctioning off an autographed Epiphone Guitar...signed by Pat Green!***

Raffle Items:
- 1G Ipod Shuffle
- $25.00 Gift Certificate to J.Gilligan's
- Gift Cards to Fuzzy's Taco Shop
- Barbeque Grilling Set
- Bath & Body Gift Set
- O'Reilly's Car Wash Set
*Several Raffle Drawings through out the evening.

**If you can't make it to the concert, but would like to participate in the raffle - please let one of the leaders know and they can get those raffle tickets to you. samantha.relien@charter.net or mandyblankenship@hotmail.com

Silent Auction Items:
- Overnight Stay at the Omni Downtown Fort Worth, and Dinner for 2 @ Reata
- Fresh Water Pearls accented with Black Leather and Sterling Silver; includes necklace, bracelet, and earrings. Beautiful set donated by Collection's Fine Jewelry.
- 3 Bottle Wine Tasting for 4 at Lightcatcher Winery
- Teeth Whitening System donated by Keith Metzger DDS with special thanks to Kelly West DDS.
- Tickets for 2 to the Dallas Symphony Orchestra for a Thursday or Friday Concert with special thanks to Lisa McFall
- Laser Hair Removal from Ideal Image $500.00 value
- 4 Tickets to Ranger Game (2 rows up from Home Plate)
- 2 Tickets to Four Day Weekend (Good for any Friday Performance)
***Stay tuned for more Auction Items to be posted!***

We also are honored to have Farrel Amis as a Guest of Honor. She will be taking the stage at live auction time to talk a bit about CF, and what fundraising and support of individuals like us means to her. So we are excited that she will joining us for the evening, thanks Farrel!

All proceeds from the concert will benefit Jeff's Entourage, Great Strides, and CFF!

For those of you who will be unable to attend this event but would still like to be apart of the festivities and raising money towards this event, please feel free to make a donation online, every little bit counts, and we depend on people like you to help us reach our team goal each and every year. If you wish to make a donation by debit or credit card click on my widget below and select the "click to donate" button. If paying by check or money order, please make payable to the Cystic Fibrosis Foundation and mail them, along with a note indicating that the donation is to be credited to "Jeff's Entourage" Team Leader Samantha Relien, to the following address:

Cystic Fibrosis Foundation
c/o Beverly James
1008 Winscott Road - Suite B
Benbrook, TX 76126

Look Forward to seeing you all there...getting all this together has been a long time dream of mine and it's starting to fall into place, and I'm wearing a grin from ear to ear, knowing that Bubba is smiling down upon me, and he is so proud. All I can say to you all...is that I do all of this for him, he is my ALL TIME HERO...and I can't tell you all, who have supported me through this journey enough, thank you for being there for me, my support system ROCKS THIS WORLD!

We got it...Autographed Pat Green Epiphone Guitar!

2009-04-15T06:07:00.000-07:00

I have been a huge Pat Green fan from day one...so this is some what surreal for me...We will be live auctioning this bad boy off at the concert Friday. Don't forget, April 17th...J.Gilligan's!

Opening band 17 Hands High will go on around 9 PM, followed with the live auction, and then with our headliner Grant Jones and the Pistol Grip Lassos! 10% of food and beverage purchase will be donated to Jeff's Entourage...so I hope to see a huge turn out from our team.

Please contact me if you have any questions regarding the event!

Deep in Thought about JE Fundraising Goal!

2009-03-26T08:15:00.000-07:00

So about this time of year, for the past 3 consecutive years we started raising money towards our Great Strides goal. It took several years after losing Bubba for us to get active again, so I feel as though we have to make up for all that lost time. As you all have noticed, we have raised our team goal to $10,000 this year. Rest assured I will not sleep until we have reached this goal for 2009. I hope to raise even more then the goal, and hopefully be in the running as one of the most raised teams this year. Yes, I know some of you may be thinking, "She is nuts, and will never reach her goal!" I just have one thing to say to that...."watch me!"

This fundraising event and journey, has become a huge part of my life, and just makes me smile when I'm alone thinking of Bubba, just knowing that I can do this for him. Yeah, my contributions now, won't help bring him back, but it will help me honor his memory in a way that I know he would be proud of me in. There are so many things in life that we look back on and say I wish I would have done things differently, and at 18 years old watching the one person in my life who had been there for everything, lose his life to a battle that he had no choice in, was the toughest turning point.

I regret not going and hanging out with him every opportunity I was given, instead being that teenager and doing my own thing. Now as an adult, I look back and say "Man if I had just done this with him, and gone there with him!" These types of things run through my head on a daily basis, even almost 9 years after losing him. I do believe that someone like Bubba is never forgotten, because he is thought about and missed by my family and close friends on a daily basis. He was...No doubt about it...the Best person I have ever meet!

I was talking to a JE team member the other day, and was telling her, that I feel as though this is the one thing that I can do to feel like I'm giving back to the time I lost with my brother, and in a way be active in a dream of his...to find a cure for CF!

Most of you don't know this, or have forgotten possibly, but Bubba was on the double lung transplant list...and man, I will tell you, when we went over to Dallas and heard that his name was officially added to the list...I had flashes into the future of him being here for all steps of my life. College, Marriage, Children, just growing up together, and he, Mandy, and I still having the opportunity to make the bond between us and Mom even stronger. In life, as I remember it, growing up, it was always us 4, and I cherish our memories, and longed that we would have that longer. I guess you can say, "I had false hope!" At that time though, it was the one thing that we had to grasp on to, and think that it did help us on the road to reality in the end!

So for all of you skeptics out there...who think I'm crazy and that there is no way that I will meet my goal...check back in June...and let me know what you think!

*Mom giggling at her crazy children in the background...and Mandy and I posing with Bubba after our glamour Shots in 1994 or 95'...time flies when you have hair that cool...oh, and I was sporting one of Bubba's old shirts, Mandy and I both were guilty of rolling sleeves and tying up shirts just so we could sport Bubba's clothes. Even though we were girls and 8 years younger...we always wanted to be just as cool as he was, even now!

Mark Your Calendar...April 17th

2009-02-23T14:22:00.000-08:00

We will be having a fundraising event at J. Gilligan's, in Arlington, TX. Headlining the event; Grant Jones & The Pistol Grip Lassos. Details to come, but this will be an event that you won't want to miss...April 17th, 2009 at J. Gilligan's

Come One...Come All!

Proceeds to benefit the Cystic Fibrosis Foundation, Great Strides, and Jeff's Entourage!

For any team members interested in volunteering to help with this event, please contact me at samantha.relien@charter.net

You Found Me - Fray Lyrics

2009-01-30T08:27:00.001-08:00

The lyrics to this song...just open up so many thoughts of wonder and questions of why things in life happen to good people. I just wanted to share the lyrics with all my readers and get their take on the meaning behind this wonderful song. The Fray has a way to put so many of my thoughts into their songs, it makes me wonder if I should have become a song writer... ;) Any how, I've just had a lot on my mind lately and this song helps me realize that I'm not alone!

I've also been missing my Bubba like crazy...he was always the one person I could talk to that would make life seem so much simpler. If that is at all possible. He just helped me see the sunny side of every situation. I just wish I could talk to him and hear his voice.

Lyrics

65 Roses Golf Tournament & Dinner

2008-10-24T10:27:00.000-07:00

~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.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~

~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.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~

~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.

2008-09-22T10:48:00.000-07:00

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...

2008-08-18T09:39:00.000-07:00

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...

2008-06-17T19:54:00.000-07:00

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...

2008-06-13T10:23:00.001-07:00

************************************

Jeff's Entourage ~ Great Strides 2008

******************************************

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...

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Jeff's Entourage-Great Strides 2008

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

2008-06-03T12:37:00.000-07:00

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...

2008-05-12T10:41:00.000-07:00

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...

2008-05-02T14:29:00.000-07:00

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

2008-05-02T09:29:00.000-07:00

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!

2008-04-21T08:18:00.000-07:00

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)

2008-04-18T13:47:00.000-07:00

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.
__________________________________________________________________
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!

2008-04-17T07:19:00.000-07:00

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

2008-04-10T10:56:00.000-07:00

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

2008-04-02T19:53:00.000-07:00

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

2008-03-26T07:59:00.000-07:00

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...

2008-03-18T12:46:00.000-07:00

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...

2008-03-18T08:06:00.000-07:00

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...

2008-03-14T11:48:00.000-07:00

"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

2008-03-07T14:17:00.000-08:00

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...

2008-03-07T13:40:00.000-08:00

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

Sunday - June 8, 2008 @ Sixs Flags Over Texas

What Is CF?

2008-03-07T12:44:00.000-08:00

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.