8th Annual Event Recap

June 21 , 2014

The team starts preparation for this day as soon as clean up from the last event has ended.  You would think a year is enough time to plan and execute and event which you have done seven times before.  Those 365 days fly by and life also gets in the way.  Before you know it you are 90 days from the event starting and you think you have nothing accomplished.

Welcome to Haley’s Team.  We go through this every year.  The planners go their separate ways hours after the finish line and awards ceremony have ended.  The priorities are set for the next year and they drive off into the sunrise.

This would be a horrible situation for many Teams but for us, it just works.  Some like to operate in total control, we thrive on organized chaos.

In 2007 three friends Randy Bright, Cal Seales and Rich LaMonica put their heads together and came up with an idea for a 5K race to be a fundraiser to help in finding a cure for Cystic Fibrosis.  Randy’s step-daughter Haley had the disease along with Rich’s friend Kirk, and the trio hatched a plan.  They needed advice so they contacted the Anniston Runners Club.  With the help of Brooke Nelson and Jon Moore the idea of the Twilight race was born.

Haley’s Team Twilight 5k became an annual event starting in 2007.  The race has had its share of fast runners, course changes and thunderstorms but has persevered.   From the first year with less than 100 runners, to a steady 220 now this team is hungry for bigger nights.

This year as the course was set up and the bulky start finish line scaffolding was erected the Team felt good as they were ahead for a change.  Then Mr Murphy showed himself again.  A storm came through.  The volunteers rushed to save the finish line, tables and signs.  Again the needed chaos was there.

As the Haley’s Kids 1K was about to start things were still getting set up.  The kid’s race is the fun spot for all the young runners.  They get to be like their parents and gain a story to tell at the dinner table on Sunday.  This year the Team was honored to have a lot of volunteers who lined the critical turns of the 1K and cheer on the up and coming runners.  This portion of the event will be renamed in honor of Kirk Hill who passed away in June 2012 due to CF.  The race will now be called Kirk’s Kids 1K.  He was passionate man who gave his all in everything he did so now the kids will give their all in his honor.

The time approached for the 5K and the team had some more technical difficulties.  The 1 mile and 2 mile clocks malfunctioned and the volunteers stepped up to cheer on the runners and yell out times as they came by.  The runners shot out at a good pace.  Steven Miles pushed the pace in the hunt for the trophy.  He just missed the podium last year, and was determined for redemption.  He showed that setting goals will get you where you want to go.  He won this year in 18:54 a minute and a half ahead of his nearest competitor.  Great work Steven!  In the Female division a young lady tore up the course as well.  At the age of 13 she set the pace for the ladies.  Abby Nunnelly came in @ 21:15 to take the top of the podium.  Great Job Abby.

We also had the honor of hosting a number of first time 5K runners.  Hopefully we gave them a good show, they had fun and will continue their running journey in the future.

Thanks to all those who supported us this year and in years past.  Without you it would not be possible to put on such a good event each year.

Next year the 9th Annual Event will be on June 20th 2015 with the Kirk’s Kids 1K starting things off followed by the kid’s award ceremony.  Once that is complete the Haley’s Twilight 5K will start and be followed by its award ceremony.  We look forward to seeing you next year.

Registration opens June 30th 2014 for next years event!!https://runsignup.com/Race/AL/Anniston/HaleysTeamTwilight5k



To everyone who came out and ran in our 7th installment.  It was a pretty good evening with a full moon and fast runners.  To all those who came out and volunteered to help us out, you are awesome.  The link below is to Geek Alabama, there is a good post and awesome photos of the race enjoy.
Geek Alabama

Also a great article from the Anniston Star by Paige Rentz


As the 7th year approaches

Dear Family, Friends and Acquaintances,

The Haley’s Team Twilight 5k Run and 1k Fun Run is a little over a month away and I wanted to take a minute to invite everyone to participate this great fundraising event.  The event raises money for cystic fibrosis (CF) research and donations go to the CF research department at the University of Alabama in Birmingham. 
We need sponsors, volunteers to help with race, sponsors,  and race participants. Did I forget to mention sponsors? :).  We have many participants that enjoy coming out and walking the course too, so don’t be shy if you’re not a runner!  The Haley’s Team Twilight 5k Run and 1k Fun Run is in the evening and the course winds thru the beautiful McClellan area.  It’s a great event for the family too.  As usual, we will have our live band there and this year we will have pony rides for the kids!
The walk/run will be held on 22 June at the McClellan Medical Mall in Anniston, AL and information on the event can be found in the attached flyers.  If you need more info or want to help out, just email me or call/text 256-283-9379.  If you know of anyone that might be interested, please take a moment to share this email with them. 

Thanks for your support!

Randy Bright
Haley’s Team Twilight Run

Less than 3 months till our 7th Annual Race

As we enter April we know it is time to hit the final stretch for our event.  We hope your racing season has started off well.  Remember our race is a night race in Beautiful Historic McClellan in the heart of Anniston, Alabama.  We just added a printable flyer for mail in registrations.  Get your blinkies and headlamps ready.  We can not wait to see you all again this year.  Bring some friends as well

Life and Lessons of a CF Mom

     Being a CF mom for the past 17 years has proven to be a journey far different than I ever expected. While some of what I anticipated has been accurate, most has been vastly different, either in the journey itself or in how I perceived it. No matter, it has been a journey that has changed me into a person very different from whom began – hopefully the change has been for the good. I feel that it has.

     My journey began 17 years ago with the birth of my daughter, Haley. At the time I thought my journey would be like that of any young mother, nothing out of the ordinary – just a life of raising my precious daughter. I knew I would do anything for her and I was committed to make her life as good as mine had been growing up. I had no idea what was to come!

     When Haley was 1 ½ she was diagnosed with Cystic Fibrosis (CF). As any parent would be, I was devastated and in utter disbelief. It took some time to wrap my head around what was to come. First I had to grieve  – but in silence and with a bright, bubbly smile on my face in order to keep Haley from feeling my pain. The grief came because at that time the life span for children with CF was only in the upper teens/ early twenties. The love of my life, the child I had vowed to protect from anything that could harm her, the child that I had promised myself would live a long healthy and happy life, now had a time limit. All I could think of was how was I going to keep her healthy until a breakthrough came along, all while fitting a lifetime of experiences into a few years in case the breakthrough didn’t come. It was overwhelming to say the least.

     By the time we had her follow-up and had learned what we were to do each day, we had realized that the days would be manageable, especially once we had settled into a routine.  I discovered that while a lot of new medications and treatments were not available, there was a lot in the research phase and some very promising possibilities were in the pipeline. It was enough to give me great hope and determination. I KNEW that I HAD to keep her healthy and her lungs in the best possible shape so that she would be eligible for the treatments as soon as they became available and so that she would be able to benefit from them. While I still felt somewhat helpless, I was at the same time very empowered and vowed to fight whatever battle it would take and make whatever sacrifice necessary to keep her healthy. I had a goal and I intended reach it!

I would quickly realize that while my heart ached for Haley, CF had become a blessing. So many of my questions had been answered as to why these things happen to children, and why it happened to my child. I came to realize that without CF I would have continued to work hard and dive into my work to the point that I saw it as the biggest blessing for us because it was an income and society tells us that success lies in money. I would have continued to rationalize the fact that my mom was keeping Haley while I was at work so she was in loving hands being cared for probably better that I could care for her. Therefore, it would not matter if a few more hours went by before I came home because we could use the overtime pay. I would have continued to tell myself that a few hours a day was enough time to spend with her and that she really wouldn’t miss me anyway. Even watching television and computer time, unengaged with her in the room, would be justified. Without CF I would have missed my little girl grow up. I would have missed so many moments that I now treasure far more than the few possessions that I may could have purchased back then and probably already gotten rid of by now. I would have missed working at her school and having our schedules match so I could spend every free moment with her. I would have missed treasuring every moment we had together and the close bond that we share. Sadly, I would have missed everything but would not have realized it until she was grown and it was too late to get it back. The fear of what tomorrow held made me learn to live for today and enjoy each day and be grateful for each day we have together.   I thank CF for allowing me to be a major part of her life and giving me the perspective needed to keep priorities where they should be. It is because of CF that I value life in a way I never knew possible, I value time down to the second, and I value my children as the greatest, most precious possessions I will ever have in my life.

      Years would go by. Haley would begin school, which she loved, and treatments would continue as always. We would later have to balance treatments and exercise regimes with homework and school activities. Unfortunately, there were times when something had to be skipped and it was usually schoolwork. I figured that if her health failed the academic accomplishments wouldn’t mean much, so I pushed her to maintain herself at least to grade level and do the best she could. We tried to keep from being bogged down with duties and miss out on fun and adventure. It was a difficult balance, but looking back I think we did quite well. Her health continued to be far above the average CFer and while the possibility of a cure or even a breakthrough treatment being approved was far into the future, hope was still very alive within me. Some medications and treatments did become available along the way that would slow the decline of the disease, but they were not for Haley. She reacted badly to each one that come along.  Still fearing for the worst, I continued to fight for the future. As the years came and went without significant decline, it seemed the fight may be paying off. As we continued to approach the age that was considered the early end of the life span when she was diagnosed, the quality of care was improving and the average life span was increasing into the twenties and thirties. Although we have known several and heard of many others who have lost their fight over the years, Haley was in good health and it was predicted she would statistically fall into the older age bracket. Good news on days when the fight gets hard! Those small victories continued to give me strength to continue the fight until the big victory is won.

     Recently, the FDA approved a medication that was the breakthrough we have been waiting on. It is not a cure, but a treatment that boarders on being nearly as good as a cure. The fight has paid off! Haley is healthy enough to be able to benefit from the treatment. As a matter of fact, it has been a remarkable improvement for her. Her entire quality of life has improved and she has been able to taper off of some medications as a result. We hope the improvement continues and will last. It is new and there is still much to be seen, but currently it holds at near miracle status.

     If all continues as it is today, CF will not become the curse we have all feared for so many years. CFer’s are now commonly living well into adulthood and it is expected with this new medication and others that are predicted to soon follow, that those who care for themselves well and stay on top of their treatments will have the potential to live normal life spans with a normal quality of life. Theyjourney is not over, but for us it is reaching a huge turning point. Our entire life focus is changing. Haley will graduate from high school in a year. After that I will no longer have to ask  “what will she ‘be able’ to do” or “how can we help her achieve what she wants to do” or  “how long will she be able to do what she wants”? Now there is no future time limit. Now the door is open for whatever Haley desires to do. There is time for her decide. Time has suddenly become our friend and not the enemy that we have fought for so long. Time is now on our side.

     This new look on the future is more difficult than it may seem. It doesn’t feel natural and feels more like I am letting my guard down. The fear that I am missing something and becoming weak and lazy haunt me daily. What if I am allowing the perils of CF to enter through the back door and attack? When something seems too good to be true it usually is. However, I have learned over the year from CF that you must live and you must live to cherish the moment. For now I have chosen to journey in the passenger seat and see where the ride takes us. After 17 years this CF mom is enjoying this moment of victory while it lasts. I will enjoy seeing my daughter laugh and feel really good. I will enjoy our time together as I always have. I will, for the first time, enjoy the relaxation and comfort of knowing that for now everything is great!  

 The Heart of CF Research

Research is just a word for so many. Although most everyone benefits from research and most feel it is a very good thing, many do not have a deep connection with actual research. It is not a tangible thing for them. For most the word research does not strike emotion and their heart doesn’t pound with excitement when they hear an amazing research breakthrough. Actually, for most the thought of research seems a bit dull and unexciting.

For me, research is what makes my heart pound with excitement. Without research my heart would be broken, because it is likely that my daughter would have left me years ago. I live for research and all the discoveries that result from it. It is both amazing and exciting. However, finding people who share in my enthusiasm is a pretty tough job!

Since my daughter was diagnosed with CF I have known that her only real hope was research. This type of research is very expensive and CF is not something that touches most families like so many other diseases. Living in a small town we spent years trying different things to raise money to help in CF research. However, so much of our time is spent on CF treatments, work, school, etc. that not much time is left to socialize and build contacts and social networks (it can actually be a bit lonely at times like these when you need people but there really isn’t anyone). Because of this we really only had 2 or 3 family members who did anything to help and even then we were at a loss for ideas as to what to do. We would host whatever events we could think of and be happy with any profit we made to hand over for CF research.

     Around 8 years ago our lives would change. A friend came into our lives who proved not only to be a genuine friend, but they became like family. Rich is a friend you can depend on no matter the circumstance and he looks for ways to enrich the lives of those around him. That is exactly what he did when he began planning the 1st annual Haley’s Team 5k Twilight race.

The fact that Rich was willing to do this for my daughter meant and continues to mean more to me than he could ever know. It gives me so much strength to know someone is fighting with us. My heart became bigger and stronger that first year and has continued to grow every year after!

     The success of this race has been unbelievable! Rich has continued to ensure that it grows every year and gets better – even with the fact that he now lives over 4 hours away. The number of runners that we have amazes me each year. Rich has created a huge event that has become part of our lives and the lives of our family. It is the heart of what we do for CF research and allows us an opportunity to bring awareness to the community about CF. The success of the race has brought nearly $50,000 directly into CF research at the local level. Truly amazing for a small community and a small group of people working on a race for only 5 years.

During the years the race has been going on, CF research has brought a remarkable breakthrough! Much of the money that we have raised has gone directly into the local research budget for a breakthrough drug. This drug has taken many years to develop, but holds promise for some CF patients to be as close to a cure as can be without actually being a cure. Because of the money raised on the Haley’s Team race, more people have been able to participate in the research, and more research has been able to be done, allowing the research phases to be completed more quickly – leading to earlier approval. 

     While this particular medication (Kalydeco) is only a breakthrough for a few CFer’s there is more like it working its way through the pipeline that could be a huge benefit for a greater number. Some are even showing promise in being the breakthrough that Kalydeco has been for this select group. Without continued support for research it either can’t happen or can’t happen quickly. Without money, and lots of it, research can’t continue. Without a continued passion and drive life would not be the same for so many, life may even cease to be. Research is the heart of this disease and the families it affects.

     Although I continue to be amazed at the generosity of individuals and businesses, those who come out to support the Haley’s Team race by volunteering and running equally amaze me. It is an event that takes so many to be a success and I am touched by each and every one who helps to make it happen. My family is very active and supportive and my once shy, CF daughter has blossomed into a young lady who eagerly stops into any business or company she can think of to ask for sponsorship. It becomes a wonderfully emotional event when I stop to think about all that is really going on. However, without Rich’s heart and his mastermind in race planning and preparation it would not be. Without Rich and others like him the heart of CF could not beat and the ominous reality of the disease would be allowed continue.

I have been around CF and CF research long enough to know that everyone that helps does make a difference. For us that difference has been very personal and one that I feel forever grateful. We are so lucky to have a research team nearby that has done remarkable things. We are also so fortunate to have a friend in our lives like Rich (and his wife, Gwen) who is helping in the fight. Rich has given my heart much hope throughout the years. He could never know exactly what that means to us and too other families and people with CF, but I do hope he is able to realize how much he is appreciated and how no effort goes unnoticed. I feel forever blessed to have such a wonderful heart be a vital part of our family.

                                   — Thank you!     

Living with CF

I have lived 41 years with Cystic Fibrosis and I can honestly say I wouldn’t be here today if it wasn’t for the people in my life who has supported me and taught me how precious life is. It is these people who have taught me never to give up and have supported the notion that it doesn’t matter how long you live as long as you live it to the fullest.

I was born in 1970 and, even though doctors have said I wouldn’t live into the teens, it is support and research that has given me a long and productive life. As we all know though, nothing comes free and costs money. It is fundraisers like Haley’s Team that helps pay the cost of research but Haley’s Team would not be possible if it wasn’t for people, like Rich, who has unselfishly dedicated their time to help find treatments to fight this deadly disease that has taken the lives of many people.

I am not that religious but I do have beliefs and I do believe in god and angels. The angels in my life are the people in it. I have known Rich my whole life and, even though he knew I was sick, he has always been there for me and made sure I was living life to the fullest. He never looked at my illness but has always looked at me as a person. He has never let me give up on myself when, at times, I felt life was giving up on me. It is that attitude that has given me the strength to face this disease head on.

I would like to personally thank everyone who participates in this run and every run Haley’s Team is part of. Because of your unselfishness, companies are able to create better treatments to help fight Cystic Fibrosis and, hopefully one day, find a cure. For us to fight the good fight, we need people like you to help us understand that we shouldn’t give up and teach us that anything is possible like Rich has taught me. From the bottom of my heart, I would like to say I appreciate all that you have done and thank you all!

By: Kirk C. Hill

6th Annual Twilight 5K


This is the 6th Annual Haley’s Team Event. The race will be held on June 23rd 2012.  This race takes place at beautiful Fort McClellan in Anniston, Alabama. The lights will be on for this event as we will be running under the stars. Come out and have fun while helping a great cause. 100% of the proceeds from this event will be donated to Medical Research at the University of Alabama Birmingham in the field of Cystic Fibrosis.

Race Times and Costs

The Twilight 5K will cost $15 until June 15, 2012, and $20 dollars until the day of the race. Registration for both races closes at 7:15 PM the day of the race. The Haley’s Kids 1K will start at 7:30 PM with a price of $8, followed by the 5K starting at 8:00PM .  Anniston Runners Club Members pay $12 until June 15th and $15 until race day.

T-Shirts and Door Prizes

T-shirts will be available for the first 250 registrants. Sizes guaranteed only to all registrations received by 15 June 2012.  All other participants up to 250 will receive shirts while supplies last.Door Prizes will be presented in the hall of the McClellan Park Medical Mall after the Twilight 5K