Welcome Brent, Our New Community Advocate

 

Meet Brent Davila, the newest member to join our team at the AHA. Brent Davila grew up as a camper going to Camp HONOR, and was later a counselor for several years. Brent feels lucky enough to be working to help provide other members of our community with the same wonderful opportunities that he has had. At the AHA, Brent will be focusing his energy on our outreach and advocacy programs. Brent’s goal is to facilitate opportunities that would allow members of the bleeding disorder community to advocate for themselves. Few can understand and explain the challenges that those with bleeding disorders and their families face better than the very people living with these challenges every day. This is why Brent believes the Speaker’s Bureau is such a valuable tool. It gives individuals from our community with a vested interest in the well-being of families with bleeding disorders, a chance to let their voice be heard, and a chance to have a say in the matters that are important to us all. Moving into the future, Brent believes it would benefit the community at large to have an actively involved group of individuals that are comfortable with advocating on their own behalf, and on behalf of people with bleeding disorders everywhere. Brent hopes to help make this a reality. Brent believes that our community has shown that we can accomplish incredible things when we all work together.

If you are interested in becoming a part of the Speakers Bureau, please contact Brent at the Arizona Hemophilia Association at 602-955-3947

George Coppock, Our New Team Mentor

George Dickson Coppock IV was born in Cave Creek, a small town just north of Phoenix, AZ. Most of his younger years were spent on his parents’ 7 acre farm on Cave Creek causing trouble with his 3 younger siblings. In 1986, his father opened a small family operated construction company, "Cave Creek Adobe" where George and his younger brothers would work during the amazing Arizona summers. George’s father believed in providing future generations with an affordable alternative for building an energy efficient home. George attended the local Cave Creek public schools until his 5th grade year, when his mother decided to home school the family. For the next 2 years, schooling was followed by working in the "Adobe Yard" as it was called. Upon completing his 8th grade entrance examination, George enrolled at Foothills Academy, a college prep school in the Cave Creek district. He attended Foothills Academy until his junior year when he switched to Cactus Shadows High School. Graduating in 2001, George looked forward to a career in the family business but wanted to further his education. He enrolled in PVCC a local Community College to pursue a career in engineering but soon found his passion in serving and helping others. 

In the summer of 2001, George attended Camp HONOR for the first time and it was truly a life changing experience for him. In the years to come, George would bounce around from job to job, from providing turn down service at the Four Seasons, to custom machine fabrication for off road trucks, until finding his home at the Hemophilia Association. George really looks forward to serving the Hemophilia community in the future for many years to come.

Joshua Schmidt - Meet Arizona's Newest Blood Brotherhood Member

 Hi, I am Joshua Schmidt. I am a Hemophiliac in Phoenix. I want to help you make your life better.

     Having Hemophilia can be many different things for many people. Some of us don’t have to worry about much because we have good coverage and bleeds are not much of an issue. While some of us are still struggling to get the needs we have met, and sometimes you just can’t do it on your own. Whatever your situation with Hemophilia is, there is a great way to to build the quality of your own life and that is Blood Brotherhood!

    When I moved to Arizona in 2010, I was in bad shape. My ankles were about to fuse themselves together before the doctor could. My wrists and forearms still need attention that I can’t give them until I get my legs are taken care of. Life was hard and the last thing I wanted was to deal with was more Hemophilia, or anything related to it. I did not want to think about doctor visits, shots, or stretching. I was also very alone. I had my wonderful family to help get me through it all, but they still don’t understand what I really go through. Nobody does but us. Sometimes we want to be left alone because we don’t want others to see us when we are down, yet we want somebody to help us through the pain we are experiencing.

    Last spring was an eye opening experience for me. I was going out of town and needed some shots. I called to place my order and was told I could not because some laws were changing. I went to instant panic mode. The reason I was in such horrible shape when I came to Arizona was because I had no access to shots before I moved here. For 6 years if I had a bleed, I just bled for days or weeks. I still had to work as many of you do, so there was no resting. Being instantly reminded of that time in my life after that phone call, I realized it was my own fault I could not get shots. I had done nothing to stay in touch with my Doctors and nothing to stay informed about Hemophilia related issues. Laws regarding health care get passed every month and I had never even shown the slightest interest, even though many of them directly affect Hemophilia and those with it. I just sat around while my fate was up to everybody but me. I thought “Self, do you really want to ask a Lawmaker or an Insurance CEO if you can have your shots?” That was the first and last time I had a thought like that.

    I set up a meeting with the fine folks at The Arizona Hemophilia Association. Luckily (for all of us) they were already 2 steps ahead of me. Most of the contents of that meeting I will save for another rant. The reason I am writing is because at that meeting Jessica and Cindy encouraged me to join Blood Brothers. I did and I am glad I did! As I said before, I am not excited about Hemophilia, there just does not seem to be a ton of good that can come from it. I was wrong!

    One of the most liberating days of my life was when I showed up to my first Annual Meeting. I looked around and saw guys limping around like I do! I saw people with ACE wraps on! It was not exciting to see all of these people who are hurt, it was comforting to know that I was no longer alone. The things that my family can’t relate to, these people could. I just have to say “Hip Bleed” and you can instantly recall the pain of your last hip bleed, what it stopped you from doing, and how long it kept you down. You and I could be the most different people, but we both know how it feels to have a bleed. We both know how it feels to have to want to do an activity so badly, but know we can’t or we’ll get hurt. That is hard to deal with but at the end of the day having somebody who knows what that is like means more than I can put words to.
 
    I just can’t emphasize enough the weight Blood Brothers as well as The Arizona Hemophilia Association has lifted from me. And it can you too. Getting to know these amazing and funny characters that call themselves The Blood Brothers has been an experience that I missed out on my whole life and never knew it. Hemophilia is obviously not normal, but when you are around the Blood Brothers, you are normal. Whether you are having a bleed at the time or have not had a bleed in years, we are still the same and we all need somebody who knows. Now I can’t wait for Blood Brothers Events! I have made so many great friends there. We get to do things that even the “Normal” people don’t get to do normally. More than that is the companionship that comes from interacting with another human who has to spend this life in a boat that looks very similar to the one you sail around in. The Hemo-Boat. 

    In closing, I would just like to ask you to come and meet me. Come and meet my friends who have Hemophilia. Come and do something that will mean more to you than you could ever imagine. Come and get to know this great bunch of guys at The Blood Brothers! We are there for you!

Joshua Schmidt

Insight into the Benefits of Online Communitcation

From the  Hemophilia Federation of America:

Adult men living with hemophilia often suffer from joint damage, arthritis, and depression from their frequent health problems. Blood Brotherhood is a national program for adult men living with a bleeding disorder that provides education, support, and establishes a sense of community. Watch this video to find out more about the program and how to get involved.

Blood Brothers from Hemophilia Federation of America on Vimeo.

Meet a Blood Brotherhood Member

Thinking about joining one of our Blood Brotherhood/Dads in Action events? A couple of the guys at the last Night on the Lake event were asked a few fun questions about themselves and their experiences in these programs. If this sounds like something you would like to participate in, join the guys at the Cardinals game on November 25th (contact Jessica at jessica@hemophiliaz.org).

Meet Andy!

1. Programs you participate in with AHA:

I participate in Camp HONOR, Camp HUG, the Salsa Challenge, the Hemophilia Walk, the holiday party, Blood Brotherhood, the annual meeting, the golf tournament, and in NACCHO.

2. What do you enjoy most about being involved with Blood Brotherhood?

I enjoy Blood Brotherhood for the opportunity it provides to men with hemophilia.  We get to catch up with each others’ lives, and we get to learn something new, all in a fun setting.  

3. What would you tell someone who has not been to a Blood Brotherhood meeting?

The Arizona Hemophilia Association deals mostly with children with hemophilia and their families.  It’s refreshing to have a program just for us men.  We may see each other at community events, but Blood Brotherhood provides the perfect venue for all of us men to interact with each other, in a setting that’s just for us.  The atmosphere is open and supportive, and provides an environment for some great conversations between men who have shared common experiences in our journey with this disorder.  

We share a common bond, and depending on how you view it, an opportunity or a responsibility.  An opportunity to support each other, and a responsibility to share with the younger generation, the parents and the children, the lessons we’ve learned from our experiences.  Messages about vigilance with our blood supply, concerns about keeping the ability to use the medication of your choice, opportunities for the younger generation to have healthy joints and to lead active lives, the encouragement that the cycle of dependence on entitlements can be broken by following the path of higher education and gainful employment, and continued advocacy with those who make our laws in order to assure our unique medical needs are understood, our access to health insurance is improved, and our voices are heard. 

4. It’s a day off of work for you, what would you be doing for fun?

I would be spending time with my wife, riding mountain bikes together, taking the dogs for a walk, enjoying a nice meal, and relaxing with a movie at home.

5. What is your favorite song at the moment?

It may sound corny, but it’s “Blood Brothers,” by Bruce Springsteen.  A guy at a couple of the other camps I attend sings it at least once during the week.  When he’s introducing it to the kids, he frames it around the history of our community and the opportunity of the younger generation to thrive and to lead “rock star lives.”  The lyrics speak to our common bond, and really resonate with me.  Check it out on YouTube: http://youtu.be/x1ZzpI1fP3I

6. Your meal of choice would be?

Green chile pork burrito with beans and rice at Arriba.