Thursday, September 23, 2010

“Improving Access to Clinical Trials Act” Passes U.S. House, Heads to President for Signature

Today the U.S. House of Representatives passed the “Improving Access to Clinical Trials Act” (I-ACT), in a victory for the Cystic Fibrosis Foundation, its advocates and 120 other health advocacy organizations.

The bill, which passed the Senate Aug. 5, now goes to President Obama’s desk for his signature. He is expected to sign it.

Saturday, September 18, 2010

SAVE THE DATE: First Annual "Make CF History" Charity Classic Hockey Tournament

Dear friends, family, fellow hockey players and supporters of the fight to find a cure for Cystic Fibrosis:

I am writing to let you know about a very exciting event, and am inviting you all to be a part of the fun and it's very important cause.

As many of you know, I have two nieces who were born with Cystic Fibrosis - or "Sixty-Five Roses" as the little kids call it. Upon learning that my nieces Madison and Gabby would be living with CF, I have made a commitment to be an active part of the generation who finds the cure.

That said, I am taking this fight to the ice (I am otherwise a perfect gentleman on the ice) and am organizing what I hope will be an annual tradition - The "Make CF History" Charity Classic Hockey Tournament. With many details yet to be ironed out, below is the key information I'd like you to know:


  • What: The First Annual "Make CF History" Charity Classic Hockey Tournament
  • When: June 3-5, 2011
  • Why: To raise awareness and money for the fight to find a cure for Cystic Fibrosis
  • Who: Adult Amateur (must be registered with USA Hockey)
  • Where: Columbus, OH (Easton Chiller)

What You Can Do To Help

* Spread the word - Facebook, Twitter, or traditional word-of-mouth...let everyone know. This event will be for hockey players as well as the general public, and the more the merrier.

* Play - As players, you'll be sure to have a great time competing and enjoying many of the 'special perks' we have in store for you.

* Get Involved - We need leaders for our Organizing Committee and volunteers to make this successful. We'd like to have our Organizing Committee in place no later than September 30. If you or someone you know would like to help, please contact me directly.

That's all for now - please don't hesitate to let me know if you have any questions or suggestions, and I'll be sure to keep you all posted as things progress. Many thanks!!

A little bit about Cystic Fibrosis (CF)

Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond. Additionally:

* About 1,000 new cases of cystic fibrosis are diagnosed each year.

* More than 70% of patients are diagnosed by age two.

* More than 45% of the CF patient population is age 18 or older.

* The predicted median age of survival for a person with CF is in the mid-30s.

What is "Make CF History"

The idea is simple: Raise $1 million dollars for Cystic Fibrosis research in order to find a cure for CF, and make CF "history" (a thing of the past).