Thursday, April 15, 2010

2010 Donation Letter. Please join us in the fight to cure Cystic Fibrosis!!

Dear Capri’s Crusaders,
First of all I to apologize for not sending out a thank you to everyone who donated to the Cystic Fibrosis Foundation last year. The amount of support received through fundraising and prayers last year was truly miraculous!! As many of you know my goal in 2009 was to raise $200,000 for the Cystic Fibrosis Foundation to help fund vital life saving research. In a round about way due to prayers, financial support, and God the goal was met!!! Again please accept my apologies for not sending out a thank you. I want each of you to know that our family gets to experience first hand the effects of each dollar everyone of you has given and each prayer so many of you have prayed. If you remember in my letter last year I informed you of the hope we had in a new medication that was in trial stages that actual treats the defect in the cell that causes Cystic Fibrosis!! We also were extremely excited because there are over 1500 known strands of DNA that cause CF and this medication happened to be targeted for one of the two strands of DNA that Capri has (which only 3-4% of the CF population carry, it is the G551D mutation). Again I want to emphasize that without the support of the CF Foundation NONE of this research would be possible. Due to the fact that CF is a very rare disease it gets no federal funding. Even more devastating is the fact that very few people even know what Cystic Fibrosis is. These issues have sadly ended up costing the lives of thousands of individuals at a very young age. Low awareness and under funding have gone on for WAY to long. The word needs to get out that a CURE is within reach! Can you imagine the money that would come in if a cure for cancer was on the brink of the horizon? It would be major news all over the world and the money to fund it would never be an issue. How many of you have heard from anywhere how close the science is to a cure for CF? This is the reason I have dedicated my life to raise awareness, support, and money for the Cystic Fibrosis Foundation. Funding is needed just as much today as ever. Can you imagine the frustration that lives are lost daily due to the under funding of CF. This becomes a lot more than just frustration when it is your child or your most precious friends in the battle against CF. Being a genetic disease CF patients are fighting to stay healthy from the moment they are born. It is unreal the amount of medication, treatments, money, and strength it takes daily to slow down the effects of this horrific disease. To all those that have joined in the fight for CF patients the impact that you all have had is simply overwhelming. To look back and see how little to nothing was known just 60 years ago about CF it is undeniable that the Foundation has bought life for those diagnosed with this disease. Since the start of the CF Foundation life expectancy has raised 32 yrs!! If you were diagnosed with CF 50yrs ago the doctors would have told your parents that you would probably not live to be old enough to start school. Today the prognosis is much better, the current research says that 40% of CF patients will live into their late thirties. The huge increase in life expectancy can be credited directly to the CF Foundation. Every medication and treatment available to keep CF patients alive the Foundation has had a hand in funding. Nearly 90% of every dollar raised for the Cystic Fibrosis Foundation goes directly towards research for the treatment and cure of Cystic Fibrosis!! There is promise and hope for a cure for this genetic disease and it is directly because of the dollars you have given to the Foundation that it is possible. The Faulk family gets to experience first hand the hope of CF standing for CURE FOUND!! Let me tell you about our journey to TN in hopes of a cure for our little girl.
Last year after leaning about the success of the new medication in trial stages,VX-770, I reached out to all of you to join me in the fight for my child’s life. This medication was actually proving to be extremely successful and effects were seen that it was stopping the process of this horrific disease. The medication had gone through the 2nd clinical stage and included in the 3rd phase was trying it in children with the G551D mutation (Capri’s mutation). The 3rd phase trial was set to start in August of 2009 and after speaking to the local foundation coordinator I realized that Capri had just turned six and was now old enough to be involved in this medical trial. My husband and I discussed it and decided that we really wanted Capri to be a part of this trial. It was a 48week long study and I started checking daily for the FDA to approve the trial and list the sites where the trial would be held. Only 30 children would be accepted into the trial and of course they had to meet all the criteria to be approved. Things fell into place and when they finally listed the states the trial was to be held in my husband and I discussed our options. If we could pick, Knoxville TN, was our top pick of about the 25 states listed in the US. I called the company that makes the medication and asked them for a list of phone numbers to the hospitals that were to be involved in the trials. He only had a few numbers and Knoxville was not one of them. I called the ones he gave me and left messages. He called back a few hours later and said Knoxville just listed their contact information on the site. I called them and left a message and guess what, they were the 1st to call me back. I will never forget the moment I received the call. I was at work and I all most had to pinch myself to see if this was real. Here was an opportunity I have prayed for the last six years everyday of my life. If accepted into the medical study Capri would get to start on the medication that would possibly stop the damage of CF. Also here we had an opportunity to give back to the CF community by helping get this medication FDA approved. A CURE for CF, of course I wanted to believe that it would happen someday, but if I were to be honest it was a dream and a prayer that I had little faith would come true. I had a great conversation with the trial coordinator in Knoxville. I asked her if we moved there would Capri have the opportunity to be in the trial. She could not believe that we were willing to pick up and move 900 miles from home. She understood our excitement and she said she would ok it with the doctor and call me back. She called me back and asked if we could move to TN within the next month. The trial was set to start in August and if at all possible we needed to be moved by then. I was overcome with joy and fear at the same time. How would this all work? Let me tell you that the work of God is amazing and the power of each of your prayers sustained us through the scariest time of our life. I called a realtor that night who was a mother of a CF child that I had meet at a CF walk years before. I asked her if she could possibly sell our house for us. She came over the next night got the paperwork done and had the house listed by Friday of the same week. She was another angel in the journey of our story! l The house sold within hours of it being listed and the miraculous part was there were at least 15 houses for sale in my neighborhood that had sat unsold for months!!! Everything else fell into place like clockwork. I could truly write a novel about the details that God worked out for us. I quit my job, we packed up our three kids, and we left the only home us or our children had ever known. We left every bit of our family and friends for a town where we knew no one. We were on our way to a house I found on Craigslist in a tiny little town 40miles outside of Knoxville. It went so quick we did not even have time to go look at the house or town before we moved. We truly left everything that we knew in life in exchange for the HOPE to have a healthy child. I looked to God for the peace that this decision to uproot our family was the right decision, that it was his will and not mine that I followed. I can tell all of you that your prayers for our family are truly all I felt I had at times. God has taken us on a journey, faith has led us, hope has given us the strength, love has given us the hope, and prayer has given us the love!! I can’t thank you enough for the prayers and support from each of you, you truly have no idea the impact it has made on our lives. We will be living in TN at least until the summer of 2011 and God could not have given us a more beautiful home away from home. We have met some of the best friends we have ever had and really inherited a second family through their love and support!!
The trial was set to start last August and only the dosing portion has been done. We have learned the value of patience over the last 9mths. Along the way we have had some scares with Capri’s heart and she also contracted MRSA in her lungs. God has held us up and she is doing well at this point. I am home schooling her this year and will always cherish the extra time I have been blessed to spend with her. Cooper and Calli are doing great and have adjusted very well to the move. The older they get the more understanding they have that their sister has a fatal disease and that brings up a whole new set of issues to deal with. Calli and Capri have become best friends and the love and bond of sisters is truly amazing. With that extreme love brings me fear of what they will have to watch their sister endure if a cure is not found.
We are overjoyed that Capri is finally scheduled to start the trial April 19th!!! She did receive one dose of the medication for Part A which was the dosing portion of the trial . At that point she was the first child and the youngest person to ever receive VX-770. Capri is truly a part of something miraculous. I want to thank each of you for your funding of this Foundation. The day she 1st received the medication the nurse let me put it in her mouth. I can’t emphasize enough that it is because of donations to the Foundation from people like you that I got to place a promising medication in the mouth of my terminally ill child. This medication has the potential to turn CF into a manageable disease instead of a deadly one. If you soak up those words it is evident that the monetary support of this Foundation is truly LIFESAVING!! You can see what each of you have been and can continue to be a part of!! I don't even have words to describe how grateful I am to each person that has joined me in the fight for my child's life. YOUR NAME to me is the name of an angel that has helped me fight the biggest battle of my life!!
I ask for your continued prayers and support of the Cystic Fibrosis Foundation again this year. My goal is to raise $15,000 for the annual Great Strides Walk to cure CF. We would appreciate your donation of $20.00 or whatever amount you can afford to support this lifesaving cause. Since we are living in TN I have included a envelope addressed directly to the Foundation in Oklahoma for you to send your 100% tax deductible donation. Make your checks out to the Cystic Fibrosis Foundation or CFF in care of Capri’s Crusaders. For those of you that receive this by email if you want to mail a check instead of giving online mail it to the Cystic Fibrosis Foundation Sooner Chapter Bethany Bank Tower 3908 N. Peniel Avenue Suite 330 Bethany, OK 73008. You can also donate 100% secure online at
http://www.cff.org/Great_Strides/NicoleFaulk6594 or on my blogpage at www.capriscrusaders.blogspot.com. Also we would love for you to join our team on face book, search Capri’s Crusaders and join us in our fight against CF. Please reach out to your friends and help us raise awareness about CF. Forward this letter to all your face book friends and ask them to take 5minutes to make a donation of any amount to help our cause. You never know how God is going to work through you. For example a very precious friend of mine reached out to her boss to support the Cystic Fibrosis Foundation last year and five minutes of her time will end up raising thousands and thousands of dollars over the years to come!! A $200,000 goal seemed like a far reach last year, but you all blew me away!! So many people stepped in and helped and that money raised will help each and every person fighting CF!! We lost our most precious friend Missy this year which was such a tough reminder that we are in a race with time. THANKS FOR JOINING ME IN THE FIGHT TO CONTROL AND CURE CYSTIC FIBROSIS!!! GOD BLESS
Nicole, Capri, Calli, Cooper, Dustin Faulk

Wednesday, December 9, 2009

FUNDRAISING UPDATE!!

It has been such a long time since I have updated this blog. We are living in TN, we moved here in August, awaiting the start of the FDA trial for VX-770. Capri has already participated in Part One of the trial and she got one dose of VX-770. We love TN and the doctors here are amazing. A quick update on fundraising. We have about 3 wks left to meet our goal of $200,000. Amazingly we might have met our goal. The Foundation is waiting for a check currently from an amazing man. A amazing women joined us in the fight for Capri and all those with CF and she reached out to her boss and he has made a large contribution to the Foundation. It blows me away the impact just one person can have on the fate of thousands of people's lives. We are still waiting to see the amount donated and the wonderful thing is that whatever he donated will be matched by an oil and gas company in TX. So currently because of the work and prayers and money of every person who has gotten involved and joined me in the fight for my child's life my goal may not only be met but blown out of the water. That is truly a miracle in this economic time. THANK YOU TO EACH AND EVERYONE WHO HAS MADE THIS MIRACLE POSSIBLE!!!

Thursday, June 25, 2009

I have added the CF button on the top right. Just click on that to make a donation to the Cystic Fibrosis Foundation!!GOD IS GOOD!!!! Just a quick update on trial info. Capri had to be able to do two things to get into the trial one was get off her inhaled saline and be OK without it, she has been off a week, #2 was she had to be able to do pulmonary function tests which she has never been able to do, we set it up with her CF doc that she would come in and practice PFT's, today was her 1st practice and she did it on her 1st try!She has done these for close to two years and could not get it down. It is a miracle that she got it today and she did it without practice. The first blow she blew a 93% and then blew the same on the next two blows!!!!! CONSISTENT!!!! The next fundraiser I am doing is give BREATHE FOR A BUCK!! I will give more info out later. I am asking everyone to help fund the cure with just a $1.00 donation!!!Your $1 gets us one step closer to the cure!!It is overwhelming to see miracles happen in the last week that has reassured us that this is what we are supposed to be doing. I feel and see God like I never have before, let me just say that I am thankful for Cystic Fibrosis and you will never be the same after you research this disease and see a glimpse of the people that live with it. There is an undeniable strength and miraculous spirit inside all of those with Cystic Fibrosis. Like I say it is such an ugly horrific disease but those that suffer from CF posses the most beautiful qualities anyone in this world could have. CF is a silent killer and I am asking you to please help spread the word about CF and help fund the cure. I ask you to take 10 minutes out of your week and look on YouTube or google cf blogs and read or view one Cystic Fibrosis story. It will show you a whole different side to a disease few people even know about. It will bless you to see the strength and spirit of someone that suffers from Cystic Fibrosis. IT WILL INSPIRE YOU to help show those with CF that this world cares, that they do matter, and that we will take steps to help them have the simple gift of breath!!!! We take so much for granted in this life, we don't even realize until we see what others endure and they endure it with a smile!! Our next fundraiser fasting Fridays falls two weeks before we may leave for part 1 of the trial. Can anyone say GODS PERFECT TIMING, we will need prayer more than ever. But please pray for all those with CF and those who have lost someone to CF. Some specific names I request you pray for are the Skaggs,Alli, Missy, and Lou! God Bless Each of you.

Monday, June 8, 2009

AS SEEN ON NEWS 9: PURCHASE RAFFLE TICKETS FOR FORD F-150, FLAT SCREEN T.V. OR BLUE RAY PLAYER TO SUPPORT CYSTIC FIBROSIS FOUNDATION

TO BUY RAFFLE TICKETS FOR THE FORD F-150, 46 Inch 1080 HD Flat Panel TV, or SONY BLUE RAY PLAYER YOU MAY EITHER EMAIL ME AT capriscrusaders@yahoo.com and let me know how many tickets and for what items and I can send you the address to mail a check made out to the Cystic Fibrosis Foundation, or you can pay for them directly on the CF website by clicking on this link http://www.cff.org/great_strides/dsp_donationPage.cfm?registeringwalkid=5774&idUser=22179 and then click on the button that says click to donate and make the donation amount to cover the tickets you want to purchase and it lets you leave a comment when you make the donation and write donation for raffle tickets and either way you would prefer to donate be sure and email me and let me know your name, address, and phone number to fill out the tickets and where to send the ticket stubs and a copy of the ticket I filled out for you. TRUCK AND BLUE RAY PLAYER are $2.00 a ticket and the FLAT SCREEN TV are $5.00 a ticket. DRAWING FOR TRUCK IS ON AUGUST 9th at the Del City Ball Park, and drawing for TV and Blue Ray is Sept. 15th. The TV is donated by Oklahoma Office Systems and they will draw for that at their office, and the brand new Blue Ray is donated by my husband and I and we will have Amy Smith pull the winning ticket on the same day as the TV. Thank you for your support in helping fund a cure for Capri and ALL others living with Cystic Fibrosis!!!Nicole Faulk

WAY TO GO TEAM CF, CAPRI FAULK FIGHTING CYSTIC FIBROSIS HOPING FOR CURE FOUND!

FIRST OF ALL THANK YOU SO MUCH TO OKLAHOMA OFFICE SYSTEMS FOR BEING OUR CORPORATE SPONSOR AND TO AMY SMITH FOR HER MOTIVATION AND ORGANIZATION OF FUNDRAISING EVENTS!!! THE GRAND TOTAL RAISED SO FAR? OVER $15,000 DOLLARS, WE CAN DO IT!!! THANKS TO EACH AND EVERY ONE OF YOU FOR STEPPING UP AND JOINING ME IN THE RACE FOR MY DAUGHTER'S LIFE. BE SURE AND CHECK OUT THE LINKS ON THE RIGHT SIDE OF THIS PAGE TO RECENT STORIES ABOUT CAPRI ON NEWS 9.

NEXT FUNDRAISER, FASTING FRIDAYS!! ALSO JOIN US ON FACEBOOK our group is CAPRI'S CRUSADER'S

We are asking Crusaders to sacrifice (1) meal each Friday for the next six months and devote that time instead to prayer, meditation, volunteering, etc. In addition we hope that participants will set the money from the saved meal aside and contribute it to the Cystic Fibrosis foundation. You can do this by accessing the link thru our blog or contacting Nicole or Amy who will collect your money. Our hope is that everyone will contribute on a monthly basis so that we can track our success! If everyone in our current group contributes $20 ($5 each friday) a month from now until December we will have raised over $10,000!!! AMAZING!This event is not meant to make anyone uncomfortable. If you do not wish to fast or contribute money sending a simple thought or prayer our way is appreciated. Fasting Fridays will last for six months-from July 1 until December 18th. Basically by sacrificing approximately 20 meals and 20-30 hours of your time over the next six months you will be making a HUGE difference in Capri's life!Please let us know if you plan to participate so that we may add you to our team roster on our CF homepage. This does not obligate you in anyway but simply allows us to see how many of our friends are participating in this event. Plus we would love for you to share your stories or personal experiences involving the fast. Who's skipping breakfast? Groups getting together to pray at lunchtime? A prayer we can say for you? We want to hear it all! Thanks to everyone and God

Bless~Nicole & Amy

Monday, June 1, 2009

NEED ITEMS DONATED FOR OUR GARAGE SALE, RAFFLE TICKETS FOR SALE

Hey guys, if anyone is doing some spring cleaning we need stuff donated for us to sell at our CF garage sale. It is this weekend and we could come and pick up your stuff or you can drop it off to us at the garage sale. Also we would love for anyone who can to come out and volunteer some of your time to help us run the garage sale. Email me if you can help out in any way. Also just to let everyone know we are selling raffle tickets for a Ford-F150 and a sony blue ray player for $2.00 a ticket and Oklahoma Office Systems has purchased a 46inch plasma TV to raffle for Capri's Crusaders and those are $5.00 a ticket. We are drawing the winner in August for the truck and Sept. for the blue ray and TV. Email me if you are interested in buying raffle tickets and I can mail you the raffle tickets and you can either send a check or pay for them on our cfhomepage at http://www.cff.org/great_strides/dsp_donationPage.cfm?registeringwalkid=5774&idUser=22179 by clicking on the click to donate button. Donate the amount to cover the tickets you want and it lets you leave a comment so put that your donation is for X # of raffle ticktes. Also if you want to help me sell raffle tickets I can mail you some tickets and you can sell them to your family, friends, and co-workers. A quick update on Capri, the trial for the new medication starts this month. Sign up for her age group has not been opened yet, but should be within days. We are going to have to move for a year if she is accepted because Oklahoma is not a trial sight, but we are willing to do whatever it takes. CF is showing its ugly head in Capri's body. It has been hard to see in just the last few months how much the disease has taken over my little girl. We are truly in a race with the clock for her life. Please keep her and our family in your prayers, we need them now more than ever!! God Bless each and everyone of you!!!

Capri’s Crusaders will be hosting a
Cystic Fibrosis Fundraiser!!!
Yard Sale in the
Autumn Ridge
Addition on Covell (between Coltrane & Bryant.)
Saturday June 6th
8am-3pm
Lots of goodies-clothes, furniture, decorative items, electronics, children's items, etc…
All proceeds will go directly to the CF foundation.
**There is a neighborhood sale going on this day so don’t miss out!!!

VIEW THE PRESIDENT OF THE CF FOUNDATION READING THE EMAIL I WROTE