2014 Make CF History Charity Classic "CF Champion" Spotlight: Meet Kate

Today's CF Champion spotlight is Team Puck Hogs' Kate Hennessey:

My name is Kate Hennessey. I am 16 years old and a junior at The Upper Arlington High School. I love playing field hockey and spending time with my friends and family. I have cystic fibrosis. I was diagnosed when I was three years old and have been battling this disease ever since. With the immense support from my parents, brothers, and friends I am able to keep my spirits high and never stop fighting. The future of this disease looks promising and gives me hope. I sincerely thank each and every one of you for playing to find a cure for my disease. 

Kate is the daughters of one of the CF Foundation

 Board Members, Marie Hennessey.

2014 Make CF History Charity Classic "CF Champion" Spotlight: Meet Taylor and Macey

Today's CF Champion spotlight is Team Black and Tan's Taylor and Macey Monturo:

Hi, my name is Taylor and my sister is Macey and we have Cystic Fibrosis. Macey is 9 and I'm 12 years old.  Macey does horseback riding and I play hockey.  I found interest in hockey by watching the Blue Jackets.  R.J. Umberger raises money for CF and that is who inspired me to play. I started out playing for the Sting house team for 2 years and then moved to u14 Blue Jackets girls travel team. I just recently tried out for u16 team and I don't plan on stopping there. My goal is to play on the Ohio State women's hockey team.   Ever since I started hockey the doctors say I've been healthier than ever! It is great exercise for my lungs.  

Macey has been taking riding lessons for 3 years.  She rides English style and is starting to compete in shows.  She wants to own her own stable when she grows up.   Macey has been in the hospital several times from lung infections.  She has missed a ton of school and works really hard to catch up.   She loves anything horse related and reads anything about horses.  

Thank you for participating in the CF hockey classics, we really appreciate your support.  The money that you help raise funds the research so that the scientists will be one step closer to finding a cure and make my sister and I able to do what we love better!

From,
Taylor and Macey

Online auctions feature once-in-a-lifetime trips, hockey gear

In addition to our traditional on-site silent auction, this year the Make CF History Charity Classic is going to offer some exclusive items up for auction exclusively online.

From once in a lifetime trips, to destination vacations, to incredible hockey gear packages, these items will be online and available for anyone (from any where) to bid on.



Below are some highlights of what will be available:

Once in a lifetime experiences to exquisite travel packages   

Bidding is open Friday, May 23 @ 8:00am - Sunday, June 8 @ 6:00pm

• The Best of Fairmont (5 days, 4 night to your favorite destination within U.S. or Canada with Airfare)
• Any Concert – The Live Music Experience (Choice of any concert with Premium Tickets + Airfare)
• Go to the American Music Awards (Los Angeles, CA - November 2014)
• Country Music’s Biggest Night (48th Annual Country Music Awards, Nashville, TN - November 2014)
• Watch the Best Football Players Live! (2015 NFL Pro Bowl)
• Wrigley Field Rooftop Experience
• Ladies and Gentleman, Start Your Engines (Trip for 2 to NASCAR Nextel Cup Race – you choose destination)
• Legendary US Open Golf Tournament
• Legendary Augusta Golf Tournament
• Rejuvenating Seaside Escape ( 4 days & 5 nights @ The Westin in Hilton Head with Airfare)
• The Home of Jazz (4 days & 3 nights in New Orleans with airfare)
• Perfect Wine Region (4 days & 3 nights in Sonoma, CA with airfare)
• Ultimate Desert Oasis (4 days & 3 nights in Scottsdale, AZ with airfare)
• Top Gun (Top Gun Experience for 1 person as Fighter Pilot for a day in a military aircraft)
• Home of Golf (7 days & 6 nights in St. Andrews, Scotland with airfare)

Exclusive Pro Hockey Gear Packages

Bidding opes Saturday May 31st at 5PM, and closes Saturday June 7th at 5PM

• Chicago Blackhawks set - Brand New Jonathan Toews replica jersey, and Pro Stock Blackhawks style hockey gloves.
• New York Rangers set - Brand New replica jersey, and Ryan McDonagh hockey gloves
• Calgary Flames set - Brand New replica jersey, and Rene Bourque hockey gloves
• Tampa Bay Lightning Set - Brand New Steven Stamkos replica jersey and matching socks, and Brand New black practice jersey and matching socks.

Stay tuned for the links to these great auctions, and let the bidding begin!

2014 Make CF History Charity Classic "CF Champion" Spotlight: Meet Madi

Today's "CF Champion" spotlight is Team Monday Knight's Madi Ives:

My name is Madi and I was born with cf. Growing up with cf really didn't/ hasn't affected me much.  I still live a normal life; hanging out with friends, family, and attending college at Purdue University.  In my free time I love going to Purdue football and basketball games (a couple wins would be nice), and of course going out with my friends.  It means so much to me that you guys are doing this and trying to make people like me live a healthier and longer life :) 

Thank you!!!!

Madi Ives, with her Uncle (and founder of the Make CF History Campaign) Chad Eddy.

2014 Make CF History Charity Classic "CF Champion" Spotlight: Meet Cassie

Today's "CF Champion" spotlight is Team Crue for a Cure's Cassie Rose: 

The Crue for a Cure is proud to once again participate in the Make CF History hockey tournament. We have temporarily changed our name to "Cassie’s Crue for a Cure" in honor of a teammate’s family friend who passed in 2012.

Cassie Rose was born in 1979 and was diagnosed with Cystic Fibrosis at 15 months of age. Her parents were told that the life expectancy was 5 years although she proved this span wrong and was never truly ill enough to be hospitalized for years. She played t-ball and softball for 11 years. Cassie continued to defy the odds by playing varsity volleyball and even marching in the Cadiz High School Marching Band. She even took a trip to Europe after her high school graduation.

In 2007, Cassie was told that she needed a double lung transplant and in September of 2008 she received two new lungs at The University of Pittsburgh Medical Center. The transplant allowed her to spend valuable time with her family and friends and to once again do things that she had not been able to do before the surgery.

Problems developed and she would have another double lung transplant in 2010. Unfortunately, she would never fully recover from this surgery and on April 22, 2012 Cassie passed away.

Cassie left behind two beautiful daughters, Kyle and Juliana, born in 1998 and 2000 respectively.  She always wanted to be a mother and was told that it would never be possible given her condition. Well, she proved everyone wrong; she persevered for her daughters and fought with all that she could.

Through all the years of testing, trips to the hospital, doctors visits, drugs, ER visits, and surgeries Cassie never asked “why me”. It is with that spirit that we are so proud to play in the memory of this strong young woman. It the hope of her family, our team, and most likely that of Cassie herself, that a cure can be found so that others may not suffer.

-Cassie’s Cure for a Cure

Cassie Rose's Senior Picture

2014 Make CF History Charity Classic "CF Champion" Spotlight: Meet Andrea and Alyson

Today's "CF Champions" spotlight are team Light Beer's Andrea and Alyson: 

It is easy to see how hockey mirrors Andrea and Alyson's "behind the scenes" efforts as they faceoff each day against their opponent, Cystic Fibrosis.  In competing against this life-limiting disease, discipline and perseverance are needed, just like the countless hours of practice spent on the ice.  Their routine includes: daily regiments of pills (more than 20 each), nutritional supplements, additional calories, inhaled medications, Vest treatments - which provide vital air-way clearance, and rigorous huff-coughing - and that is all when they are healthy!  These are the shots that they take every day to make their lives longer and stronger.

At age 13, Andrea and Alyson have stayed relatively healthy.  Their past medical history, as is the case with most of those living with cystic fibrosis, has included numerous hospitalizations, multiple surgeries, and rounds of intravenous antibiotics.  On the outside, they look like normal teenagers, but on the inside, a daily

shootout is taking place against cystic fibrosis.  Their daily shots on goal, the advances in medication and treatments, the constant vigilance from their physicians and care team, and the support of family and friends like you have been and remain essential in adding tomorrows to Andrea and Alyson's lives.

We are watching with great excitement several drugs that are in the research pipeline and in Clinical Drug Trials with the FDA.  These drugs target those like Andrea and Alyson, 80% of the cystic fibrosis population, who are living with the most common genetic mutation that causes cystic fibrosis.  Raising funds and spreading awareness about the disease in order to help find a cure and ensure access to needed healthcare is more important now than ever!  We are in a power play situation and definitely 

making shots on goal.  Thank you for all of your support.   

 

-- The Hoffman Family 

 

Andrea and Alyson are the daughters of one of the CF Foundation

 Board Members, David Hoffman.

 

2014 Make CF History Charity Classic "CF Champion" Spotlight: Meet Matthew

Today's "CF Champion" spotlight is team Dayton's Matthew Nisky:

Matthew is 11 years old and was our first child.  We had a perfect pregnancy with no concerns, however quickly after his birth we realized that something was wrong.  Matthew was not gaining weight and was diagnosed with Failure to Thrive.  He was not able to keep his food down and was put on numerous medications to prevent him from throwing up and overall was a very unhappy baby.  Little we did would comfort him.  After 10 months of numerous doctors appointments and tests he was eventually diagnosed with Cystic Fibrosis.  While we were so scared of what his future would look like we were also feeling relieved to finally know what was going on with his little body.  Children's Hospital here in Columbus has become another home to our family and a great source of support as Matthew and his sister (who also has CF) spend a lot of time there.

Matthew has had numerous surgeries and hospitalizations over his 11 years due to CF complications, which include several sinus surgeries, tonsillectomy, adenoid removal and most recently a nissen surgery in November.  He also has had numerous PIC Lines in order to deliver antibiotics through an IV, the most recent being in October.  His lung function has increased since these two hospitalizations and we are happy to report that he continues to improve.  

While Matthew has Cystic Fibrosis, he is also a normal boy with normal boyhood dreams.  He LOVES sports and participates on basketball and baseball teams each year.  Despite his smaller size he also has the dream of playing football (I am trying to keep his focus on baseball and basketball as they are not as physical).  Matthew has a great sense of humor and loves to make people laugh, sometimes to the point that he cannot control his own laughter.  He attends Wilson Hill Elementary School and is in the 5th grade.  He has been on the Merit Roll each quarter.  This was obtained with little help from his parents as Matthew does not want any help with his studies!!  

This past year he was lucky to receive his Make A Wish.  Matthew wished for a family vacation and for the first time ever our family of four went on a vacation together.  It was one of the best weeks of all of our lives.  Matthew didn't sleep the night before he was so excited about going.  Atlantis was our destination and one day we all hope to return to that beautiful resort!  

Matthew does not like anyone knowing he has CF and will go to great lengths to hide this from everyone, however he also knows what the disease is and what it can do long term.  Matthew has the same dreams as everyone else, to live a long life and be healthy.  Our dream as his parents is for this to become a reality.

We cannot thank your team enough for taking the time out of your busy schedules to play and raise money for this disease's cure!!!

We thank you from the bottom of our hearts!!

Sincerely,

The Nisky Family (Mark, Deanna, Matthew (11), and Maria (7))

Matthew is the son of one of the CF Foundation

 Board Members, Deanna Herold-Nisky.

2014 Make CF History Charity Classic "CF Champion" Spotlight: Meet Gabby

Today's "CF Champion" spotlight is Hatrick Swayze's Gabby Ives:

My name is Gabby and I was born with Cystic Fibrosis. Growing up with CF was normal for me since I never knew a life without it. My friends and family have always been so supportive of me, which makes the journey very manageable. It is a lot easier having an older sister going through the same things as I am, and I can always go to her when I need help. Cystic Fibrosis has not limited my life whatsoever. I am able to live a normal teen's life thanks to the effort from all of the wonderful people like you taking part in these events. :) I am so appreciative for all of the players making a difference in lives like mine. It means the world to me that so many generous people are putting in their time to making a cure for Cystic Fibrosis. I could never thank you guys enough.

Team Hatrick Swayze, led by team Captain (and Make CF History Founder) Chad Eddy, will be dedicating their tournament to Gabby. Gabby's sister Madi (also born with CF) will be represented by the Monday Knights.

Gabby (left) and Make CF History Charity Classic Chairperson, Chad Eddy (right)

2014 Make CF History Charity Classic "CF Champion" Spotlight: Meet Alli

Today's "CF Champion" spotlight is team Baron's Alli Hile:

My name is Alli Hile and I have a twin sister named Abbi. I am 13 years old and I have Cystic Fibrosis. Abbi does not. Thank you for what you are doing to raise money for this disease. I would like to tell you about when Abbi and I were born. We were born on January 5, 2001. We appeared to be very healthy babies. But, when Abbi and I were about 15 hours old, I started to have some trouble. Thanks to our nighttime care nurse (my mom says she is my angel), I was moved to Nationwide Children's Hospital and received emergency surgery. I was diagnosed with Short Bowel Syndrome and ultimately Cystic Fibrosis. I spent 116 days in the hospital - that time. Cystic fibrosis is a complex, genetic disease that affects about 30,000 children and adults in the United States. Today, the median age of survival for an individual with CF extends into the late 30s. CF is caused by a defective gene that causes the body to produce abnormally thick, sticky mucus, which clogs the airways, leading to chronic lung infections and impaired digestion. Currently there is no cure for Cystic Fibrosis. In the spring of 2008, my lung infections became really bad & resulted in lung surgery to remove the entire middle lobe of my right lung. After that I only had to go to check ups and a few sinus surgeries for the next 5 years. Then, I got pretty sick again this past fall. I had to go back into the hospital for 8 days to get IV antibiotics and lots of therapy. Right now, I am still fighting some lung infections cause CF get worse as I get older. It stinks! I am a competitive dancer and I hate when I am not feeling well and have to take it easy. I have worked really have since I was 3 to be on the competition team, and lots of time CF gets in my way. I do not look ill. Most of the time I feel healthy, happy and strong. But I have a war going on inside my body. As new symptoms appear and old ones become a little worse, my medicine shelf becomes fuller and fuller. I take approximately 30 pills a day, do chest therapy and breathing treatments 3 or 4 times a day and and I have to eat 3,000 calories a day. It's exhausting doing all that and wanting desperately to be a "normal" teenager. I used to ask my mom all the time, when would my CF go away? I know now that it won't. But, I also know that the treatments are getting better and better every year, thanks to the CF Foundation. My most important job right now is doing my best to stay healthy, so that I can take advantage of new treatments. And, that's my story. 

Alli is the daughter of one of the CF Foundation

 Board Members, Jill Hile.

2014 Make CF History Charity Classic will honor "CF Champions"

Each year, the organizing committee of the Make CF History Charity Classic looks for ways to further our purpose in raising awareness (and funds) for the Cystic Fibrosis Foundation.

Last year we were inspired by Team Colin, whose Team Captain Steve Lopez entered his team in honor of Colin Mong.  Colin is a CF patient and is the son of a colleague of Steve's.  Having Colin with us last year, and having a team with his namesake win the tournament, brought to light what our event weekend is truly all about.

And with that, inspired by Colin and Team Colin, the 2014 Make CF History Charity Classic will be honoring 14 "CF Champions" throughout the weekend.  Each team will be playing for and dedicating their tournament to a CF patient - who we will be referring to as our "CF Champions".  Each "CF Champion" will be a part of the pre-tournament team photos, as well as a ceremonial puck drop on Sunday before the play-out games to end the event.  

In the weeks leading up to the event, we will be posting spotlight posts on each of our "Champions" so you can get to know them and their story, and see how meaningful it is to have them as an integral part of our event.