Where did the summer go?

I've been pretty busy with school for the kids, Cub Scouts, Boy Scouts, and another venture I've been researching.

Found out the Arizona Hemophilia Association(AHA) joined the HFA. That move will definitely give our hemophilia community access to more programs in Arizona. I was asked what the difference between NHF and HFA was. Easy answer - NHF is industry driven and HFA is community driven. Can't wait to see some of HFA's programs in action.....

AHA is hiring a Transition Counselor for our teen population. They want to have the position filled by the end of January 2010 or before. This person will be the most important person for our hemophilia kids in Arizona and how this person starts the program will determine if the program will work (the kids are the jury on this one).

The boy scouts are currently spending all their time at a Christmas Tree Lot. Our troop sell Christmas tree so they can go on their summer adventure trip. If you live in the Phoenix Valley please consider getting you Christmas tree @ 14th St and Northern. Tree lot hours are 3-9 Mon - Friday and 10-9ish Sat and Sun. Tress are reasonably priced and they have Douglas Fir (5' to 8') and Noble Fir (5' to 9').

NFH Denver 2008

What an event! Our family had a great time. The factor company evening events were well attended and fun. The best in my mind was The CSL Game Face event. CSL had 11 Wiis they were giving away to the winner of 5 Wii games. The games were: swimming, golf, basketball, baseball, and bowling. The kids were separated by age (12 and under, and 13 to 18) and only kids with bleeding disorders were able to win. Once the event was started all the kids played the Wii games and the CSL reps kept track of high scores. At the end of the GAMES all the kids that played received a "gold" medal. Then, the winners of the individual Wii games were called up on the stage and awarded a Wii console. The 11th Wii was drawn from the attendants and given away.

I tried my feet at Dance Dance Revolution that evening. I don't know how they do it. I got boo-ed of the stage for missing too many steps.

Val Bias is our new CEO. I think it's a good pick. He has a vested interest in the betterment of our cause. I did hear a few things that concern me. Is he going to champion hemophilia or broaden the umbrella of our "cause" to include all blood disorders. He did comment of the safety of our blood supply. We have an interest in the blood supply being clean, but should "we" take on that cause? I don't know!? I also don't know about the joining of the local chapters. What's in it for me? What is in it for us? Do all the chapters need the same thing? the only thing I know for sure is.....
I don't want to be like the American Liver Foundation
The ALF is not much more than a money making local chapters for the national organization. They have a lot of national clout but what do they do for the local community. I haven't seen much and I don't want our Local Hemophilia Chapter to be money making chapters with no programming for the community.

I'll take a wait and see approach with Val - I've seen him in person before NHF Denver and I like what I hear. What is his slant? What is he going to do shake things up to validate him being appointed to CEO?

WOW that was a deviation from the topic...... back on point. I didn't see HFA at one of the booths. Anyone know why the Hemophilia Federation of America was not there?

The morning symposiums were great. The Wyeth breakfast on "It Takes A Village" was excellent. It was great to hear how some HTC use families to support other new families. Our HTC does not do this - I've asked. I wish we could have had a mentor family we could have called for the little challenges in life. Wyeth had two families come and describe what they did to help each other through life with hemophilia. I'd like my son to have a mentor and one day to be a mentor.

I love going to these national events. WHY? I learn so much about other communities and families. What they do and How they do it? An informed consumer is better for the community than an uniformed one. We can be more of a pain in the ass to the Association and HTC. I understand that they, the Association and HTC, want to do things the way they always have done it, but if it doesn't work, why not change how your doing it.

That last paragraph was crude and not well thought out. The overall idea is there.