Community News and Events:

 

▪ National Camp Conference.

 

             In early February J.D., Kathy, and Bob (from boys camp) and Gary (from Family Camp) went to Tempe, Arizona for the 8^th annual North American Camp Conference for Hemophilia Organizations – NACCHO. 

 

             This one of a kind 4 day conference is a way for camp counselors and directors from around the world to meet, exchange ideas, and learn new camp skills and activities designed to help improve their camp programs.  The conference features nationally recognized professional speakers in child development, medical care, and experiential learning (fun activities that teach something) – all of which are involved in running camp.

 

             Aside from going to all of those sessions, Bob is on the committee that works year round to plan and run the conference.  Kathy, J.D., and Gary won 2^nd place at the Camp Display Fair.  Camp also won 1^st place in the NACCHO Cup competition for our “Hope Connection” program where our campers make and collect things for Camp Ray of Hope, a camp for underprivileged children with bleeding disorders in Romania.

 

 

▪ 2010 Washington Days.

 

             In late February Homer, Bob, Chad, and Paul joined over 300 people from across the national bleeding disorders community in Washington D.C. for Bleeding Disorders Advocacy Day.  Led by the National Hemophilia Foundation and the Hemophilia Federation of America, this yearly visit to our nation’s capital is a chance to speak directly to members of Congress about bleeding disorders issues. 

 

             The families of some of our campers were there too, and we spent a full day in the halls of Congress meeting with legislators and their staffs about health insurance laws and changes in Federal funding for treatment centers.  Later we went on a night time bus tour of Washington to see more of the many monuments to American history found through the city.

 

             You too can participate in this yearly event; just watch the websites from the HFA, and NHF, or check back here in November.  Remember - if we don’t speak up for ourselves, then who will protect the future of our community?

 

Did you know?

There are 140 bleeding disorder treatment centers in America, and in 2009 they received 17.6 million dollars of your tax money to help pay for their operation? 

 

▪ 2010 Albany Days.    

 

             In March community members from the 16 treatment centers and patient associations representing New York went to our state capital in Albany for the 3^rd Annual Bleeding Disorders Advocacy Days.

 

             Chad, Bob, Homer, Chuck, and Paul joined over 60 people to meeting with over 30 State Senators and Assemblymen who are considering a law to limit how much insurance companies can charge us for factor and medicine co-pays.

 

             The laws, known as S5000 and A8278, would keep insurance companies from charging us co-pays as high as 40% of the cost of our factor (if one dose of factor costs $4,000.00 then a 40% of cost co-pay is $1,600 - that you have to pay).  These high co-pays are called Tier 4 or cost sharing, and insurance companies have asked the New York Insurance Department for permission to start charging them here.

 

Act today!

Contact your State Senator and Assemblyman to urge them to vote on bills S5000 and A8278 before the end of this legislative session in June!

 

 

Camp High Hopes