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.

16 teams, 3 days, 1 goal: Make CF History

Four years ago, when I sat down at a Tim Hortons with my good friend Chuck Scott to discuss what it would take to create a hockey tournament to benefit the Cystic Fibrosis Foundation, I envisioned 16 teams coming together for a weekend of fun and hockey to raise money and awareness for Cystic Fibrosis.  A few cups of coffee and some rough doughnut-napkin math later, the Make CF History Charity Classic was born.

The 2013 Make CF History Charity Classic, our 3rd annual event, was everything I had envisioned that Sunday morning four years ago - 16 teams, coming together for a 3-day tournament weekend, all sharing in the one goal behind the Make CF History campaign: finding a cure for CF.  For the first time, we had three full divisions to accommodate three different skill levels - with teams from Dayton, Cleveland, St. Clair, MI, and Columbus filling the divisions. 

Fund Raising Perspective

This year we asked the players to fund raise instead of paying a flat team fee in order to participate.  And fund raise they did - helping us raise over $51,000 as of the time of this writing, with more money still trickling in.  

Our top fund raising team was Chuck Scott's Hatrick Swayze (right), who raised an event leading $6,185!  Thank you guys!

When I think of the weekend from this perspective, it illustrates one very important fact:  although we were 16 different teams wearing 16 different jerseys (a formality in order to distinguish two teams from each other during the games), we were really one team - a team consisting of 235 players joined together to participate in the fight to find a cure for Cystic Fibrosis.  And for this, I am so very grateful for the players and their time and energy they put into being a part of our 2013 Make CF History Charity Classic.  We will always be Team MakeCFHistory.

The Player Perspective

The 'charity classic' always has been, and always will be, about putting the players first.  It is about creating an event that provides the players a first-class experience, such that they come back year after year.  This includes more than just hockey - it includes free "SWAG" (Stuff We All Get), complimentary food and beverages, game jersey and socks, a Skills Competition and places for the players to hang out together before and after the games.  

The player's pride and enthusiasm of playing in our event is evidenced in the pictures and comments we see on Facebook and Twitter, whether it be updating their profile pictures of them in action from the weekend, or tweeting pictures (left) and positive comments (below) of their time while at the event.  

I wish every weekend was @MakeCFHistory classic!!
— Tyler Moats (@gafn11) June 12, 2013

 
Thank you players for all of your support and participation - without you there is no event, and we hope to see you all again next year!


And now, the rest of the story...

The Ceremonial Puck Drops

This year, we were blessed to have four very special people with us to drop pucks in our ceremonial opening face-offs to kick off our Friday night games.  All four of our "VIP" guests brought to life the purpose of our weekend as they each are living with CF.

Kate Hennessey (left) kicked off the event by dropping the puck before our first game of the weekend.  Kate is the daughter of Marie Hennessey, who is a member of the Board of Director for the CF Foundation of Central Ohio and is the Chair Person of the Fore-Love Golf Outing (taking place September 9, 2013 at Brookside Country Club).



Thomas Mims (right), a Sports Journalism student from Kentucky, came all the way up from Lexington to join us.





Taylor Monturo (left) joined us with her parents from right here in Columbus.



And Colin Mong (right), a CF patient awaiting a double-lung transplant from the Cleveland Clinic, capped off the night by dropping the puck before the opening game of his namesake team, Team Colin, who dedicated their tournament to Colin.  Team Colin would end up winning the Experienced Division, which is a fitting outcome for a team who dedicated their weekend to Colin - who we are all now rooting for to "win" in his battle against CF.

The Lady from Mansfield, OH

At one point in the morning on Saturday, I received an email notification of a donation made on my player page from an "Iona Flores".  I did not know of anyone by this name, and quickly wrote it off to someone who intended to make a donation to another player and made it to me in error.  Later that afternoon, I walked into the lobby of the rink and noticed a lady at the check-in table talking with the staff from the CF Foundation.  As I approached them, the lady turned to me and asked, "Are you Chad?"  "Yes I am", I replied.  "I am Iona Flora", she exclaimed as she reached to shake my hand.  "You made a donation on my player page!", I countered.  "Yes, I did.", she replied.  I couldn't help but forgo a handshake to give Iona a big hug.  She went on to tell us that she had found us on Facebook, and that she came down from Mansfield to be a part of our event.  She also shared that she has two grandchildren living with CF in Texas.  It is moments like these, and people like Iona, who make the Make CF History Charity Classic so special - it brings together people from all over (hockey fans or not) who share in our aspiration to find a cure for CF.  And it is moments like these that make me question the 'fact' that CF effects only 30,000 people in the US - when it seems that most everyone I meet and know have a connection to CF.  Thank you Iona for being there this weekend, and for making my weekend so special.

The Kids Charity Game

This year we ended the weekend with our 2nd Annual Kid's Charity Game.  We hosted two teams consisting of Mites and future Squirts who, like the adult players, were asked to fund raise instead of paying a flat fee.  And, like the adult players, fund raise they did - raising nearly $2,000!   

The game was kicked off with a very special ceremonial opening face-off puck drop by CF patient Serena Scilia (below), who's dad Sam also treated the kids and parents to a very heart-felt explanation of Cystic Fibrosis before the game got started.  And this year, all of the kids jerseys were numbered with the number "65".  Sam eloquently explained the significance of the number "65" to the kids and parents - which is of course symbolic of "65 Roses", what most kids often call cystic fibrosis because "65 roses" is easier to pronounce.   

Thank you to all of the parents and kids who participated in this very special aspect of the weekend.  And, a very special thank you to Sam Scilia and his daughter Serena for making the event that much more special.

Friends and family - new and old

The best part of organizing an event like the Make CF History Charity Classic is getting to see my friends and family, who come from near and far to be there.  With that, I also get to meet so many incredible people who by the end of the weekend are my new found "family".

To our incredible Organizing Committee, all of the volunteers, the players, our sponsors, and to the staff of the Chiller Ice Rink - I wish I could one-by-one shake everyone's hand, give you all a hug, and thank you for making this year's 'charity classic' so special - and for joining Team MakeCFHistory.  

We will be the generation that finds the cure for CF.

THANK YOU to everyone who supported the 2013 Make CF History Charity Classic!

"Team Colin" gives perspective to this year's 'charity classic'

One great benefit that comes with organizing the Make CF History Charity Classic is all of the people I get to meet who I might not otherwise have had a chance to.

Last year we welcomed Trevor Umlah, the goalie who joined us all the way from Halifax, Novia Scotia.  And we now know that he is not just any ordinary goalie, nor any ordinary person for that matter.  His story is an inspiration to all of us who have been affected by CF in one way or another, and we are looking forward to having Trevor with us at our event this year.

This year brings to us another inspiring story - one that exemplifies what our event is all about, and one that will keep everything in perspective for us throughout our event weekend.

When team captain Steve Lopez entered his team - "Team Colin" - in this year's event, he reached out to me afterward with a brief explanation of what his team name represented.  I asked Steve if it would be OK to share his story, and he kindly obliged. And so, here it is:

The story behind Team Colin begins with my connection to Sherry Mong, whose Ph.D. dissertation I supervised in the sociology department at OSU. Sherry's son Colin has CF, and over the years as Sherry progressed through our graduate program, I learned from Sherry about CF and how it affected her son and her family. As she wrote her dissertation on the experiences of family caregivers who perform medically complex home care, I learned more about her family's CF story. Earlier this year, I suggested to my Wednesday night hockey team that we enter the 2013 Make CF History Tournament, and I told them a little bit about my connection to Sherry's family, Colin, and CF. One of the guys immediately said, "That's very cool, man - we should enter the tournament and name the team after him!" So, with Colin's blessing, that's what we're doing. Team Colin is dedicating our effort in the tournament to Colin Mong and his fight against CF. We hope he will soon receive the lung transplant he needs!

And with that, meet Colin Mong:

My name is Colin Mong, and I was diagnosed with CF a few months after birth. With rigorous lung clearance and frequent antibiotic intervention, I was able to enjoy childhood relatively unrestricted. For years I could participate in the "normal" day-to-day activities alongside my peers, attending school and developing a variety of relationships and hobbies. In high school I played on the tennis team, and acquired interests especially in music (piano and singing), psychology, and philosophy. For the past few years I've attended Transylvania University in Lexington, KY, studying psychology and philosophy, and hoping eventually to earn a doctorate in psychology to become a psychotherapist for the VA. This semester I had to take a medical leave from school, and am living at home to await a double-lung transplant with the Cleveland Clinic. I spend my days keeping up with my friends and girlfriend in Lexington, writing and playing piano music, reading, and trying my hand at writing some stories and poetry. After the surgery, I'll return to Transy as a Junior! I want to say thank you to all those who support the Charity Classic tournament! It helps to know that people really care! 

It's stories like Colin's, and people like Steve and his team, that make this event so special.  Their stories gives us perspective - they remind us that while we have 16 teams playing in our event, we really have one team - one team of over 220 players that will come together on the weekend of June 7th - 9th to join in on the fight to find a cure for CF...and to make CF "history" (a thing of the past).


Thank you Steve and Colin for sharing your story and for being such an integral part of this year's charity classic!

The 2013 'charity classic' welcomes back Trevor Umlah

The organizing committee is privileged and excited to welcome back our special guest from last year's event, Trevor Umlah.  Trevor will be joining us again this year, all the way from Halifax, Novia Scotia. 

Why is this so significant, you ask?  As a follow up to my “Why are we doing this charity classic thing” post, Trevor is another example of the significance of our efforts (worldwide), and the inspirational stories of those who are winning in the fight against Cystic Fibrosis (CF).  When you get to meet Trevor, you’ll quickly learn that Trevor is not your ordinary person, nor your ordinary hockey player.  

Here is his story:

I was diagnosed with Cystic Fibrosis in 1968 when the average survival age was 13 years. Now, as a parent, i couldn't imagine receiving this as a diagnosis for your child.

I was raised to never back down from a challenge and never to let anyone or anything get the best of you. I wrestled with CF my entire life, but I was always on top. Even in my late 30s with lung function so bad that I could have qualified for disability pension, you could find me on the ice twice a week. Soon, however CF would gain the upper hand.

In the summer of 2007, with 18% lung function, I moved my family to Toronto to await a lung transplant. I was on supplemental oxygen and i couldnt walk any more than 50 feet without stopping. Luckily, my wait was only 3 weeks. Recovery was tough, but after 3 months of rehabilitation, I returned home and began my new life -- with lung function of 118%.

At 6 months post transplant, I asked my doctor if I could return to hockey. Fully expecting him to say "you're crazy"; instead he insisted I return. "You didn't this gift so that you could look out the window at life. Get out there and live it."

Four days later, I was in the crease getting shelled in a 7-1 loss. It wasn't pretty, but this was my final hurdle in recovery. From the moment I stepped on the ice that cold February night, i have been back 'on top'.

I am thrilled to be back at the Make CF History Classic this year. It is a real world class tournament you guys put on in Columbus.  I met so many wonderful people on and off the ice at last year's Classic. I hope to meet more this year.

 

Here is more on Trevor's story:

Trevor also devotes a lot of his time as an advocate for organ donation in Canada - for more information, go to http://www.lifepassiton.ca/, or follow Trevor on Twitter @LifePassItOn.

###

Why are we doing this 'Charity Classic' thing?

I often struggle (seriously struggle) with how to best present this thing we call "The Make CF History Charity Classic". And with that, I often question/challenge myself as to how I can be more effective at making sure that the Make CF History Charity Classic is an event that everyone - from the players to the volunteers - feels proud and energized to be a part of.  And in doing so, I keep coming back to this fundamental question: Why are we doing this?

In considering that question, which at times haunts me, I wanted (needed) to be sure that the answer to this question is far beyond the incredible willingness and generosity of the organizing committee and players to support me and this event, which I conjured up over a coffee and doughnut with my good friend Chuck Scott at a Tim Horton's one Sunday afternoon (Seriously, that's how this idea was hatched).

Then, this week, I received this video from my sister Sarah, who has two daughters who were born with CF.   And, bingo, there was the answer - right there, plain as day. Seven minutes and 8 seconds later, as if a calculator reminding me that two plus two still equals four, I was reminded of "why":



This video is courtesy of the Chicago chapter of the CF Foundation. It features my sister's husband RV, and their daughter Gabby (my God Daughter, and the younger of my two nieces with CF), among others who are effected by CF.  Their message, so simple yet so powerful: our efforts are making a difference, and with drugs like Kalydeco we are close...so close to finding a cure.  

And now I know (again) why, and for whom, our "Make CF History Charity Classic" exists. This video reminds us that we are making a difference. It reminds us that because of our efforts, we will be a part of the generation that finds the cure - and when the cure is found, we will have been "on the ice" when the winning goal is scored. We are that close! 

THANK YOU to everyone who supports our Make CF History Charity Classic and the CF Foundation, and for making a difference in the lives of those affected by CF.

2013 Charity Classic putting the 'fun' in fund raising

The 2013 Make CF History Charity Classic is off to a great start, with 12 teams already registered for this year's event.  Our goal is to host a total of 16 teams, and we are prepared to expand the divisions if needed.

A new twist to this year's event requires our players to raise a minimum of $125.00 in order to participate.  In prior years, we simply required a flat team entry fee. Involving the players in the fund raising efforts was an idea suggested by the players in last year's post-event player feedback survey.

With the players now actively participating in our fund raising efforts, we've added some fun and friendly competition to the process as well.  This year we will be giving away great prizes to the top individual fund raiser, as well as to the top team fund raiser.  And with our new and improved event website on cff.org, each player will have their own personal fund raising page to help promote their efforts to friends, family and colleagues.  All donations can be processed online, and the players and teams can track their progress leading right up to the event.  It doesn't get much easier than that!  All donations go directly to the CF Foundation of Central Ohio.  

As for me, I am not exempt of the fund raising requirement (as the Event Chair and Tournament Director), and I have set a personal goal of raising $1,500.00.  My personal fund raising page is ready go, and I plan on exceeding my goal (of course)!

Our total fund raising goal this year is $50,000, and with the growing number of teams and players we expect nothing less than to achieve our goal.  We want to thank the players, and especially the team captains, for their support and participation! 

Happy fund raising, everyone!

ABOUT THE 2013 MAKE CF HISTORY CHARITY CLASSIC
What:  Men's and Women's Adult Amateur hockey tournament (USA Hockey sanctioned), including:

• Kids' Pond Hockey Tournament (for Mites and Mini-mites)
• Skills Competition for the adult players
• Silent and Live Auction
• Public Skate
• Stick-and-puck for kids with Blue Jacket Mascot "Stinger" (TBA)
• Blue Jackets Autograph Session (TBA)

When:  Friday June 7- Sunday June 9, 2013
 
Where:
Chiller Easton Ice Rink
3600 Chiller Lane, Columbus Ohio 43219
614-475-7575
www.thechiller.com

Why: To benefit the Cystic Fibrosis Foundation and cystic fibrosis research

Join us on Facebook and follow us on Twitter (@MakeCFHistory)

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