Don't miss one mother's personal story!  
Check out the 
Community Voices section of this issue of  Get Infused!
IN THIS ISSUE
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Counselors in Training (CIT) Trip
May 6-8, 2016

May 14, 2016

Camp HONOR
May 30-June 4, 2016

Men's Group
June 25, 2016


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Call us with questions 
on any of the above programs, events and social groups!
(602) 955-3946
















































TIME
We are always looking for volunteers to help with events.  Please contact Jess for more information!
 
TALENT
Reach out if you know a potential partner for the AHA!

 
TREASURES
We rely on the generosity of individuals and corporations to support our mission.  Click below to donate!
 
Get Infused!    
March/ April 2016

AHA EVENTS
11th Annual Statewide Meeting
Friday-Sunday, August 19th-21st 2016

The dates are set for this year's Annual Statewide  Meeting.  We've scheduled the meeting for August 19th-21st and we're very excited to get the community together again for a weekend of education and entertainment!  Because of  some great feedback we got on last year's venue, we've decided to have it again at the Hilton in Mesa. We're still working on all the details for this year's meeting and we will send a formal Save the Date soon. 

We're also heading over to Sun Splash again this year for the Saturday evening dinner, so don't forget your swim suits and sunscreen!   

Keep your eyes on our website for more information and a link to register!  You can also email us or call us at (602) 955-3947 if you have any questions about our Annual Statewide Meeting!
Arizona Hemophilia Walk
Saturday, November 6th 2016

The 2016 Arizona Hemophilia Walk is set for November 6, 2016 and we are already making all the preparations! This annual event is a non-competitive 5K walk where family, friends, community and corporate teams walk in honor and in memory of those whose lives have been affected by bleeding disorders. We're asking community members and everyone who is passionate about our mission to build teams, raise funds, and spread awareness of the effects of bleeding disorders. The funds raised by the Arizona Hemophilia Walk will support the Arizona Hemophilia Association's mission to enhance the quality of life for people with inherited bleeding disorders, while advocating for a cure.

Questions about this year's Walk?  Contact Chelsea at (602) 955-3947
My Nana's Best Tasting Salsa Challenge
Saturday & Sunday, March 5th & 6th 2016

The 32nd Annual My Nana's Best Tasting Salsa Challenge had a great turn out this year! We continued the tradition of making it a two-day event and with the help of all of our sponsors, committee members, volunteers and staff we were able to pull in over $85,000!  

This year we had over 100 different salsas to choose from and a new Grand Champion! Congrats to  Brian Hay from Hay Salsa Lovers for being the top dog at this year's competition! Brian also won an opportunity to have his salsa manufactured by El Sol. Keep a look out in the local grocery stores for a chance to taste the winning salsa for yourself!
 
Our Margarita Mix-Off brought in a great deal of fans and fun by raising almost double what they raised last year in just ONE day!
 
We would like to extend a big shout out to all of our volunteers this year! Without your help we wouldn't be able to hold such a great event.
 
With music, family fun, and plenty to eat, the Salsa Challenge will always be a fantastic event. We hope to see you all again next year! 

Questions about the Salsa Challenge?  
Contact Chelsea at our office! 
(602) 955-3947

 
AHA PROGRAM RECAPS
Men's Retreat
Friday-Sunday, April 1st-3rd 2016

The 2nd Annual Men's Retreat was a success!  The guys had an opportunity to strengthen friendships and create new ones.  We had 17 men ages 18 and up come on our camping trip to Chavez Crossing in Sedona.  The weekend was an opportunity to escape to the serenity of Sedona and relax. The guys enjoyed great food, hiking, campfire chats, laughs and camaraderie.   Follow us on Facebook to see more photos  and check our website for info on upcoming Men's Group programs!


Questions about the Men's Retreat? Call  Steve  at our office, (602) 955-3947.
AHA UPCOMING PROGRAMS 
Counselors in Training (CIT) Trip
Friday-Sunday, May 6-8 2016

The CIT trip is being held Friday through Sunday, May 6-8.  The teens will be heading up to Payson, Arizona for a weekend of building skills and learning what it takes to be a camp counselor.  If you haven't signed up your teen (16-17 year old), be sure to fill out the camp application now!

If you have any questions about becoming a CIT, give  Josh a call at (602) 955-3947.  
BleedHERs
Friday, May 13th 2016

Join us for BleedHERS Ladies Night on Friday, May 13th from 5:30pm to 8:30pm, sponsored by Baxalta. The evening will be filled with fun, food and friendship...don't miss out! All women ages 16 and older, are invited to attend. Baxalta will give us a presentation about the importance of our stories and the impact they can make on others. Then we'll have some fun as a group. Dinner will be provided and the event will take place at the Arizona Hemophilia Association office located at 826 North 5th Avenue, Phoenix.  
Camp HONOR Registration is OPEN!!
Monday, May 30th-Saturday, June 4th 2016

The Mission of Camp HONOR:

"Is to enrich the lives of children affected by an inherited bleeding disorder by providing life-changing camp experiences that are exciting, empowering and educational, in a physically safe and medically sound environment"

Camp HONOR is a week for children with bleeding disorders and their siblings to enjoy fun outdoor activities, educational programs and making lasting friendships.


Camp applications can now be found on CampDoc.  If you have trouble accessing your account or if you have any questions , give  Josh a call at (602) 955-3947.  
ADVOCACY & HEALTHCARE
Legislative Days, Lunch on the Lawn 
Wednesday, March 23rd 2016 

On Wednesday, March 23rd, members of the Arizona Bleeding disorders community gathered on the lawn to the Arizona State Capitol Building and met with legislators throughout the morning. This event brings awareness in the state's legislative community about bleeding disorders and the need for access to affordable healthcare. 
If you have questions about this program, please contact us at our office, (602) 955-3947.
AHA UPDATES & NEWS
Arizona Bleeding Disorders Health and Wellness Center
Family Focused Primary Care For All Health Center Logo
Children 12 years and up
All Adults
   
The Arizona Bleeding Disorders Health and Wellness Center is a non-profit health clinic focused on patient centered, comprehensive and integrated treatment. We provide chronic disease management, preventative care, and ancillary services to promote a health lifestyle in partnership with the patient and family.  We believe that the chronic care conditions affect the entire family so we take a family focused approach to care.  All profits are reinvested into offering education, outreach and other free services to benefit the bleeding disorder community.  
 
The clinic was established by the Arizona Hemophilia Association to provide primary care integrated with bleeding disorders care.  The unique advantage of this approach is that we are able to address all of your medical and emotional needs, ensure continuity of care, and manage co-morbidities.  
 
Chronic Care Management
*    Hypertension
*    Hyperlipidemia  
*    Diabetes 
*    Asthma & Allergies
*    Thyroid Disease
*    Pain Management
*    Behavioral Health
*    Hemophilia
*    Von Willebrand Disease
*    Sickle Cell Anemia
*    Rare Factor Deficiencies

Preventative Care
*  Dental Assessments
*  Physical Therapy Evaluations
*  Men's , Women's and Child's Health
*  Counseling
* Stress Management
Healthy Lifestyle Education
* Nutrition
* Physical Fitness
* Lifestyle 
 Call for An Appointment Today!
821 N. 5th Avenue
Phoenix, AZ 85003
602-680-7722
 
We accept most private and public insurance plans and uninsured patients. 
  
One Mother's Story
Paisley Scott

With Mother's Day just around the corner, we invited one of our community members to contribute to this issue of Get Infused! with her personal story. She recently spoke at a national conference and graciously offered to let us share her story with our entire community!  

Introduction of Self and Family
 
Want a great bio?! I know, whoever can write their own bio and still feel good about yourself after deserves a medal. I wrote my bio. I read the 3 sentences, then messaged one of my older brother's who is away to the islands for med school, and said simply. "I suck." He said send me what you have. So I typed the 3 sentences, and he said, "Give me 2 minutes!" And then he sends me this bio that made me just cry. Then, he messages, you are way more than any bio, Paisley. That is where I am, as a parent of a child with Severe Hemophilia. I have become accustomed to this lifestyle. Arguable numb at times (which is a front by the way). It never goes away, it's always there. I don't ever wish he didn't have it. Because I feel defeated by it if I dare speak those words. I don't ever want him to feel defeated, much less by something that makes up apart of who he is. Don't get me wrong, he is also more than a bio, he is more than Hemophilia. He is my son. And he is not defined by his bleeding disorder. He is intelligent, he is an artist, he is a "master builder", he is silly and serious, he wants to join the service someday. He is My Hero.

Justin's diagnosis
 
Justin had a normal pregnancy. He was born at 40+ weeks. His due date was 06/06/06. He waited a week and came on the 13th. So now someday will be celebrating a Friday the 13th birthday! Anyway, he came and we were just beyond excited! Everything was going swimmingly, until I got up to use the restroom. I saw blood on my chest, and quickly realized it was coming from Justin. And that is where our hemophilia story begins. Justin's PKU heal stick was still bleeding. The nurses there said I was opening it every time I fed him and told me to be careful how I was holding him. I felt horrible. I can't even hold a baby right?! So they sent us home, telling me not to worry about it but continue to change his band-aids. So there I am not trying to be a over sensitive, naive, first time mother. 

He continued to bleed.
We continued to change the band-aids. 

The next morning I wake up and panic. He never woke in the night for me to feed him! He was awake but lethargic. I was so scared. Opened his swaddled blanket and there was a lot of blood. I did as the staff from the hospital said, I didn't go to the ER. I went to our assigned eds. I walked right in without a call or appt. I opened the blanket & the dr only spoke Spanish! What are the chances right? She started telling me with urgency to go. I could only make out building with many colors. Needs blood. I wrapped him back up and my sister was driving. I didn't put him back in his car seat, I held him. Tighter than I have held anyone.  I had no idea what building we were looking for. But we got on the 51 and drove. Then, there it WAS, THE BUILDING OF MANY COLORS. PCH! They rushed us back and did an iv in his head. And this is when I first let out a giggle through my tears. His party hat. I can so vividly remember that hat. They gave him this medicine, and he stopped bleeding. I said, "I want that. I need to know what that is." The nurse smiled and looked up at me and said, "Oh honey, you're going to get a lot more of this." Boy was she right...

To read more about Justin's experiences with Camp HONOR, having a port, and more, click HERE!

If you want to share your story, please contact Millie at the AHA (602) 955-3947!  
 
COMMUNITY CORNER
Community Education Days
Mark Your Calendars!


Knowledge is POWER!

With all of the new products and treatment options becoming available, it can get confusing very quickly!

Join us for an interactive discussion to become a more knowledgeable consumer! You will learn about the product distribution chain, how to calculate the cost of your treatment, consumer awareness, and how the bleeding disorder industry works. You will have the opportunity to hear from each participating manufacturer to learn about their products and services. 

You will hear about the new treatment technologies and the future of bleeding disorders! 

The meetings will be held from 9am - 3pm with lunch provided. Childcare will also be available. We will have education sessions for middle school and high school students as well. 

Interested in Community Education Day? Call Chelsea  at our office, (602) 955-3947.
Advertise with us! 
Free Opportunity for Our Community


Members of our community are invited submit advertisements for their personal business to appear in our bimonthly e-Newsletters for free!  Contact Millie with questions or to submit an advertisement!
NATIONAL & MEDICAL NEWS
Soozie Courter Scholarship Opportunity 
Apply by May 6, 2016

We know that education is important in achieving your career goals, but the increasing costs can be daunting. The hemophilia community continually seeks out ways to provide opportunities for its members. For the 19th year in a row, Pfizer is pleased to announce The Soozie Courter Hemophilia Scholarship Program, which awards academic scholarships to applicants who present the best combination of a creative and persuasive essay, excellent recommendations, and superior academic standing. The program is now accepting applications for the 2016-2017 school year!

You can read the personal essays of the previous scholarship winners on the Our Hemophilia Community Facebook Page.

Don't wait! The deadline for applications is Friday, May 6, 2016
To apply online, go to:

For more information, call the Hemophilia Hotline: 1-844-202-9344