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Want to see your ad in our next eNewsletter?
Contact Millie for more information about advertising opportunities with the Arizona Hemophilia Association!
Community Member's Businesses can advertise for free!
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Salsa Challenge
March 5 & 6, 2016
Camp Picnic
March 19, 2016
Future Leaders Program
March 20, 2016
Legislative Days, Lunch on the Lawn
March 23, 2016
Men's Retreat
April 1-3, 2016
Community Education Day, BCCC Phoenix
April 17, 2016
NOW Conference
April 22-24, 2016
Community Education Day, Tucson
April 30, 2016
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Call us with questions
on any of the above programs, events and social groups!
(602) 955-3946
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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!
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Get Infused!
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January/ February 2016
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New Year's Resolution - Get More Involved!!!
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My Nana's Best Tasting Salsa Challenge
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Saturday & Sunday, March 5th & 6th 2016
Have you bought your tickets yet?
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Camp HONOR Picnic
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Saturday, March 19th 2016
Our Camp Picnic is Saturday, March 19th at our office located at 826 N 5th Ave in Phoenix. This year's camp theme is Star Wars and we're revving up for an awesome week. The Camp HONOR Picnic is a way for families with new campers to learn about the experience and what to expect. It's also a way for the families to share experiences for the newer campers' parents.
If you have any questions about the Camp HONOR Picnic, give Josh a call at (602) 955-3947.
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2nd Annual Future Leaders Program
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Sunday, March 20th 2016
On Sunday, March 20th, from 9 am - 5 pm t
he Future Leaders will gather again to discuss and learn how the younger adults in our community can make an impact and advocate for the bleeding disorders community. The young adults who attended the Washington, D.C. trip will also get a chance to share their experiences and educate the other Future Leaders about the impact their voice can have both at State Legislature and on a national level.
If you have questions about this program, please call Josh at our office, (602) 955-3947.
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Legislative Days, Lunch on the Lawn
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Wednesday, March 23rd 2016
On Wednesday, March 23rd, members of the Arizona bleeding disorders community will gather on the lawn to the Arizona State Capitol building and meet with legislators throughout the morning looking for legislative support for the issues of the bleeding disorders community. This event also brings awareness in the state's legislative community about bleeding disorders and the need for access to affordable healthcare. Please consider attending this year's Legislative Days, Lunch on the Lawn to help represent the community by meeting with a Legislator in your district.
If you have questions about this program, please call Josh at our office, (602) 955-3947.
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Men's Retreat
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Friday-Sunday, April 1st-3rd 2016
The 2nd Annual Men's Retreat is scheduled for April 1-3, 2016 and we're excited to host this year's event for the men of our bleeding disorders community. The weekend will be a great opportunity for the men to bond and create better relationships with each other. We also plan to do educational sessions throughout the weekend, mixed in with a lot of time for relaxing and entertaining options. Below is a photo of a game of human foosball taken at last year's Men's Retreat!
Questions about the Men's Retreat? Call Steve
at our office, (602) 955-3947.
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Community Education Days
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Mark Your Calendars!
Phoenix - April 17th, 2016
Tucson - April 30th, 2016
Yuma - May 14th, 2016
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.
Mark your calendars, registration will be open soon!
Interested in Community Education Day? Call Josh
at our office, (602) 955-3947.
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Camp HONOR Registration is OPEN!!
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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 filled with 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.
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Men's Group
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Saturday, January 23rd 2016
On Saturday, January 23rd the Men's Group gathered for an all guy's night, starting off at a community member's home for dinner and networking. Afterward, the group headed out to the Suns vs. Hawks game where the Suns narrowly defeated the Hawks with a score of 98-95.
If you're interested in getting involved with the Men's Group, call
Steve at (602) 955-3947.
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BleedHERs
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Saturday, February 20th 2016
On Saturday, February 20th, our BleedHERs group met at the AHA offices. We heard a wonderful presentation about bleeding disorders and women's health presented by Kevin Griggs, PharmD of Octapharma. We also enjoyed a delicious, spa style lunch with salads, sandwiches, fresh fruit and infused water. Then we learned to make home beauty treatments including body and facial scrubs and body butter. We had a lot of fun and hope to see all of you at the next event scheduled for May 7. Bleedhers is open to all women over 15 who are affected by a bleeding disorder. If you have any questions or suggestions, please contact Gretchen at 480-270-8810.
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Thank You to Our My Nana's Best Tasting Salsa Challenge Sponsors!
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Thanks for Making a Difference!
We would like to do a shout out the the sponsors of our upcoming My Nana's Best Tasting Salsa Challenge. This event is our biggest fundraiser of the year and the funds raised help us provide amazing and unique opportunities for our bleeding disorders community. We couldn't do this event without these sponsors!!
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Help Spread Awareness of Bleeding Disorders Throughout March, the 1st Annual Bleeding Disorders Awareness Month!!
What is the Red Tie Challenge?
A movement created by the bleeding disorders community and the National Hemophilia Foundation (NHF) to start a conversation about inheritable bleeding disorders
and support March 2016 as the first Bleeding Disorders Awareness Month.
Why the Red Tie?
Because it symbolizes the blood ties that bind
over 3 million Americans to our community.
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Future Leaders go to Washington!
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February 23rd-28th, 2016
From February 23rd-28th, we selected ten of our young adults aged 17-21 to participate in one of our most highly anticipated opportunities of the year. Four female and male staff members from the Arizona Hemophilia Association chaperoned these young adults to Washington, DC for advocacy training, participation in NHF's Washington Days, and some time to
sight see
throughout the city to see national monuments and museums!
All costs for this program were covered by the AHA and the teens had a great experience! They met with Senators and House Representatives to spread the word about the #RedTieChallenge and March 2016 as the first Bleeding Disorders Awareness Month. They also asked that the funding for Hemophilia Treatment Centers remain at its current level. Finally, the group requested that House Representatives co-sign the bill HR-3742 and to request that one of the two Arizona Senators champion the bill in the Senate. The bill HR-3742 would put a stop to Qualified Health Plans under the Marketplace denying payment for premiums by a non-profit organization.
We had a ton of fun with this new program and look forward to hosting it again next year! If you haven't yet, please take the
#RedTieChallenge to help spread awareness for the bleeding disorders community!!!
If you have questions about this program, please call Josh at our office, (602) 955-3947.
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Welcome Chelsea, Our New Development Coordinator!
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Chelsea Bolyard was the former program
director at Camp Sky-Y and worked with AHA's Camp HONOR 2 years in a row back in 2013 and 2014. After leaving the camp she worked for a couple local marketing companies and realized she couldn't stay away from the AHA. We have brought her to our team as the new Development Coordinator where she will be working on all of our fundraising events, marketing, and anything else she can get her hands on!
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Arizona Bleeding Disorders Health and Wellness Center
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Wouldn't it be nice if there was a place where all of your medical needs could be managed by one provider?
- Where your care is coordinated rather than fragmented?
- Where there is a partnership with YOU to help YOU decide what is best for YOU?
- Where you build a long term relationship to support you as you age?
- Where any profits made go back to help everyone with bleeding disorders?
We think so too...
The
Arizona Bleeding Disorders Health and Wellness Center
is now up and running!
We provide primary care to
ANY
adult, 18 years and older. We also provide bleeding disorders care. We offer an integrated approach to treat the whole person and act as the conduit for all of your medical care needs. We partner with other specialists to provide seamless, coordinate care.
Call (602) 680-7722 to schedule
your appointment today!
821 N 5th Ave
Phoenix, AZ 85003
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Health and Wellness Series
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Mark your Calendar!
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Healthy Teeth, Healthy Life
Presented by Dr. Rebecca Schaffer
March 14th, 2016 - 6 PM
at the AZBD Health and Wellness Center
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Empowerment
Sponsored by Biogen
March 31st, 2016 - 6 PM
at the AZBD Health and Wellness Center
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Call (602) 680-7722 to register
!
821 N 5th Ave
Phoenix, AZ 85003
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Advertise with us!
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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!
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NHF Annual Meeting
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Thursday through Saturday, July 21st-23rd 2016
This year's NHF Annual Meeting directly precedes the World Congress hosted by the WFH, taking place in Orlando, Florida. For what to expect, read the below article written by the Gowers, a family chosen by the AHA and provided with a scholarship to attend the 2015 NHF Annual Meeting held in Dallas, TX:
This past August, we had the amazing opportunity of attending the National
Hemophilia Foundation's 67th Annual Meeting in Dallas, Texas. This conference enabled us to network with multiple families from around the country, as well as those involved in working within our community. The event was beyond any expectations, from the exhibit hall to the number of different classes offered to the fun activities planned for the entire family. One of Tommy's favorite experiences was meeting the superheroes as displayed in this picture. We all really enjoyed the cowboy themed barbecue, rodeo and hayride offered as the final event. We left feeling very excited and hopeful for the treatments and options becoming available in the near future. The amount of research being done for our community and the amount of support offered to everyone living with the challenges of bleeding disorders is amazing. It is difficult to sum up and express all of the wonderful experiences, but this is an event that we very much look forward to attending again.
The Gowers
To apply to attend this year's NHF Annual Meeting, please keep an eye on our
website for registration information coming soon! Questions? Call or email
Yleana at (602) 955-3947.
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NOW Conference
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Friday-Sunday, April 22nd-24th 2016
NOW
is a national educational conference for individuals and families who are living with vonWillebrand Disease. It is a forum to learn about new medical advances, to gain tools that can help you better manage von Willebrand Disease (VWD), and to share with others facing the same or similar challenges. For the first time this year, thanks to a generous grant from CSL Behring, the AHA is able to host two NOW Conferences in Phoenix. The first was held November 6th-8th, 2015 and the second will be held April 22nd through the 24th, 2016 at Pointe Hilton Squaw Peak Resort. This April NOW Conference will feature experts on pain management, parenting, stress, women's issues, and much more. We hope for another successful national conference on this more common bleeding disorder and look forward to greeting all those accepted to attend! Registration for the April Conference is already full but feel free to contact
Joan
with questions about the NOW Conference by calling (602) 955-3947.
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Researchers Make Gene Therapy Breakthrough in Dogs with Factor VII Deficiency
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February 12, 2016
In a recently
published paper in the journal Blood, a team of researchers from the University of North Carolina (UNC) and The Children's Hospital of Philadelphia (CHOP) reported the successful application of gene therapy in dogs with factor VII (FVII) deficiency. This represents a significant advance, demonstrating the safety and efficacy of a novel therapy in large animal studies is a standard precursor to eventual clinical trials in humans.
FVII deficiency is a rare bleeding disorder with an incidence of 1 in 300,000 to 500,000, as both parents need to carry the gene in order to pass it on to their children. The condition, which affects men and women equally, is characterized by inadequate production of the FVII clotting protein. Babies are often diagnosed within the first six months of life after sustaining an intracranial hemorrhage or bleeding in the gastrointestinal tract. People with the more severe form of FVII deficiency often experience joint and muscle bleeds, easy bruising and bleeds after surgery. Bleeding can also occur in the skin, mouth, nose and genitourinary tract, while women often experience severe menorrhagia (prolonged, heavy periods).
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