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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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Men's Group
January 23, 2016
BleedHERs
February 20, 2016
Future Leaders go to Washington
February 23-28, 2016
NHF Washington Days
February 24-26, 2016
Salsa Challenge
March 5 & 6, 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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November / December 2015
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Arizona Hemophilia Charity Golf Tournament
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Thursday, December 3rd 2015
We are so grateful to all of our sponsors, participants, donors and volunteers who helped make our 16th Annual Arizona Hemophilia Charity Golf Tournament a huge success.
We had an amazing day at the beautiful Ocotillo Golf Resort and couldn't have done it without you!
Follow our
Facebook
page to see photos of this year's golf tournament and our other programs and events!
If you want to learn how you can sponsor with the AHA,
give
Chastity
a call at (602) 955-3947.
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My Nana's Best Tasting Salsa Challenge
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Saturday & Sunday, March 5th & 6th 2016
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Men's Group
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Saturday, January 23rd 2016
On Saturday, January 23rd the Men's Group will be going to a Suns game against the Atlanta Hawks. The men will be getting together to enjoy comradery and a chance to network with each other. Pregame will held prior to the game and game time is 7:00 PM.
If you're interested in attending this Men's Group, call Steve at (602) 955-3947.
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Future Leaders go to Washington!
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February 23rd-28th, 2016
From February 23rd-28th, our young adults aged 16-20 are invited to participate in one of our most highly anticipated opportunities of the year. Four female and male staff members from the Arizona Hemophilia Association will be chaperoning 10 of our young adults to Washington, DC for advocacy training, participation in NHF's Washington Days, and some time to travel throughout the city to see national monuments and museums! All costs for this program will be covered by the AHA but space is limited, so please don't hesitate to apply.
Members from our community ages 16-20 are invited to apply for this incredible opportunity by clicking here. Students will be provided with a letter to their school officials explaining the educational reasoning for their absence.
If you have questions about this program, please call Josh at our office, (602) 955-3947.
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Phoenix Holiday Party
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Saturday, December 12th 2015
This year's holiday party was held again at McCormick Stillman Railroad Park. We had fun inflatables, food trucks, popcorn, a special visit from Santa Claus, and gifts for all the kids! The party was held from 4 until dark, just in time for the Railroad Park's unique train ride to see holiday lights around the park! Follow our Facebook page to see photos from this year's Holiday Party! If you have any questions about our Holiday Parties, call Josh at (602) 955-3947.
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Tucson Holiday Party
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Sunday, December 13th 2015
Tucson's holiday party was held on Sunday, December 13th at the Omni Resort in Tucson from 2pm-5pm. There was a great turnout with over 225 people and attendees enjoyed gifts for the families, a visit from Santa Claus, a delicious buffet meal and a station for attendees to make their own s'mores!
For more information about programs offered in Tucson, give Josh a call (602) 955-3947.
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Camp HUG
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Friday-Sunday, October 23rd-25th 2015
Camp H.U.G. gave a chance for our community to enjoy a weekend
with their family and take advantage of the opportunity to live the camp life, like their kids!
The weekend was a way for our community to connect and share time with their families and other families in the bleeding disorders community on so many levels. We provided activities and educational sessions but allowed a lot of time for families to relax, reconnect and enjoy the camp experience.
This year's family camp was held at Prescott Pines Camp and we had about forty families in attendance. Follow our Facebook page to see photos from this year's family camp. If you have any questions about Camp H.U.G call Josh at (602) 955-3947.
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Epic: Get Schooled!
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Saturday, December 19th 2015
Life after high school is fast approaching or may have just passed. Are you ready for your future? On Saturday, December 19, Epic met to get the latest info on scholarships, ACT/SAT test prep, and get a start on the real-world job hunt!
We closed out with delicious food, friends, and epic video games brought to us by the Game Trailer. This social group is open to all 15 - 20 year old's in our bleeding disorders community, so if you're interested, please let us know!
If you have any questions about Epic, give Steve a call at (602) 955-3947.
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Hispanic Heritage Day: Tucson
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Sunday, November 22nd 2015
This year, for the first time ever, the Arizona Hemophilia Association hosted two Hispanic Heritage Day events sponsored by Baxalta. The first event occurred on Sunday, September 27th and was located in Phoenix. T
he second Hispanic Heritage Day event was located in Tucson on November 22, 2015 and included entertainment and educational programming for our Southern Arizona families.
Questions about Hispanic Heritage Day? Call Josh
at our office, (602) 955-3947.
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Thank You to Our 2015 Donors!
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Thanks for Making a Difference!
We have had a wonderful year providing programming and services to the Arizona Bleeding Disorders Community and we couldn't have made any of that possible without the help of donors like you! Whether you donated your time, money or items to the Arizona Hemophilia Association, you made a difference in the lives of our community so on behalf of all of us at the AHA, THANK YOU! We look forward to 2016 and all it has in store for the AHA and the community! There will be new campers at Camp HONOR, new programs offered throughout the state, and new ideas of ways we can help enrich the lives of our community! We appreciate your continued support and hope we can count on you in 2016!
There are many ways to support the AHA by giving your time, talent or treasures. Just contact
Chastity
for more information about how you can get involved and make a difference!
Time:
We are always looking for volunteers to help support our programs, events and fundraisers. Whether it is helping with an event, becoming a camp counselor, or helping in the office - We Need You!!!
Talent: We partner with local experts and businesses to provide in-kind services that support our operations. Our success over the years is a direct result of our strong partnerships with the local community.
Treasures: General donations are always appreciated to support our programs and services.
Tax Credit:
Make a gift that won't cost you anything - Contributions to the AHA for donations up to $200 for individuals or up to $400 for couples filing jointly qualify for a dollar-for-dollar tax credit on your AZ tax return. Donate now!
Matching Gifts:
Many companies will match your gift. The matching gift program is a great way to double the impact of your contribution to the AHA. Check with your company!
United Way Partner: You can designate the AHA when making a contribution through United Way. Our Donor Designation Number is 1441.
Planned Giving: Remembering the AHA in your estate plans directly impacts the lives of people living with bleeding disorders.
Donate Your Vehicle: Have that old car that has seen its better days? Feel good about getting that new car by donating the old one to us. All donations are tax-deductible! We make it so simple for you! Just give us a call and we will pick it up!
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Advocacy Summit
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Get involved, call us at (602) 955-3947!
On December 4th we held the 2015 Advocacy Summit. Now in its 4th year, the Summit brought together key stakeholders that influence and impact access to healthcare for those with bleeding disorders in Arizona. Meeting participants included representatives from manufacturers of bleeding disorder clotting factor, home healthcare organizations, specialty pharmacy providers, Hemophilia Treatment Centers, national hemophilia organizations, and Arizona policy leaders.
The purposes of the summit include:
1) discuss policy issues that impact access to healthcare in our community,
2) collaborate to promote access to care and product choice in Arizona,
3) gain a consensus on advocacy issues facing our community, and
4) develop priorities for a plan of action for 2016.
Specific issues facing access to care in Arizona include out of pocket costs for prescription drugs, the proposed AHCCCS Care Program by Governor Ducey and the impact of the Insurance Marketplace thus far.
Presentations were made by AHCCCS and St. Luke's Health Initiatives to offer a status of the Insurance Marketplace. Attendees discussed what initiatives the Arizona Hemophilia Association could consider to help influence access to care.
Several considerations and suggestions were discussed to set forth a plan of action for 2016. These include:
A. Community Education Day in Tucson, Phoenix and Yuma AHA will offer an education opportunity to learn about the new products becoming available and consumer awareness. With all of the new factor products coming to market we believe that it is very important for all of us to understand what is available so that we can make the best decisions for ourselves and our families. The education day will be held in Phoenix, Tucson and Yuma in April. Stay tuned for the dates in your area.
B. Future Leaders Program to NHF Washington Days in Washington D.C. AHA is bringing 10 teens between the ages of 16-20 to join us in speaking to our elected legislators in Washington D.C. It is an amazing opportunity to learn about our federal government and how important it is the share our story and have our voices heard.
C. Resource Guide AHA will develop an updated resource guide providing information about the products and services available to the Arizona Bleeding Disorders Community.
D. Bleeding Disorders Advocacy Advisory Board AHA will develop an advisory board to collaborate with key stakeholders throughout the year about issues facing Arizona.
E. Introduction of Legislation AHA will research and evaluate introduction of legislation in 2016 or 2017 for access to care and to establish a system to move from AHCCCS to private insurance.
F. Legislative Day - March 23rd For the 10th year, AHA will host the Legislative Day at the state capitol to create greater awareness with state legislators about the needs and issues facing our community. Join us to raise your voice together.
Please let us know if you have any other ideas or suggestions for advocacy efforts in 2016! Your voice matters and we want to hear from you! You can email Cindy with your thoughts!
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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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Advertise with us!
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Free Opportunity for Our Community
Members of our community can 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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Greetings to All!
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The Ayala & Telles Family
My name is Angie and I am a carrier of Hemophilia.
My son Angelo has Hemophilia A.
Our family is so grateful to have met AHA.
Angelo has been a member and patient of PCH and AHA since he was a newborn.
Angelo is now 15 years old.
I don't know what I would have done without the team of support between Phoenix Children's hematology/ oncology clinic, the HOPE program and AHA.
The knowledge and guidance they have provided my family, in learning of this bleeding disorder has brought extreme peace and understanding.
I am so proud of how the whole team and staff come together whenever he has a major bleed or when he has needed surgery, to financial assistance with his factor eight.
As a single mother, I am used to doing it all myself, whatever comes our way.
I am always trying hard to be a step ahead of our circumstances. Not always does this work. LOL :)
It is such a blessing to be able to pass the ball as I call it, at great times of need and let this team work their magic and professionalism when coordinating Nurse home visits to train my son to infuse himself at any given time, successfully, prepare him prior to a procedure as well as after.
They amaze me as they even take the time out of their busy schedule to give a call and follow up with Angelo to see how he is doing after a surgery or a
recent emergency room visit.
I'm a very overprotective mother and only with the AHA have I been able to finally let my guard down and allow my children to attend summer camp. They have had such a wonderful time and they look forward to attending every summer! While all along, during this week at camp, I feel very peaceful knowing the great, educated and professional staff are overseeing my kiddos.
We also do not want to forget all the great and wonderful
trips, adventures, family camp, etc. which the AHA provides in first class always and allow us to enjoy our time with our individual family and our AHA family. Without this support, God only knows, we would not be able to afford and do this on our own. Much appreciation!! Thank you to all of you! Merry Christmas and Happy New Years to all!
God Bless you AHA and PCH Family and friends!
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NOW Conference
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November 6-8, 2015
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 hosted two NOW Conferences in Phoenix. The first was held in February and the second was held November 6-8 at Pointe Hilton Squaw Peak Resort and featured experts on pain management, parenting, stress, women's issues, and much more. The weekend was a great success and we look forward to our next NOW Conference April 22-24, 2016! Questions about the NOW Conference? Call Joan at (208) 301-1748!
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Researchers Learn More about FVIII Origins
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December 1, 2015, Rice University
In breakthrough research,
Rice University (RU) scientists have uncovered more about the cellular origins of factor VIII (FVIII), a protein that plays a critical role in the blood clotting process. The study paper was co-authored by research biochemist Nancy A. Turner, BA, and hematologist Joel L. Moake, MD, at RU's Department of Bioengineering.
Earlier studies established that FVIII is produced in endothelial cells that line the walls of blood vessels in organs such as the heart, liver and intestines. RU investigators have delved further by looking for the specific source of FVIII generation and deployment from within different types of endothelial cells.
Turner and Moake's experiments focused on human umbilical vein endothelial cells (HUVECs)' which are found in large veins, and glomerular microvascular endothelial cells (GMVECs), which are located in the smallest capillaries of the kidneys. Although the presence of FVIII in these types of cells had not been previously confirmed, investigators had recognized them, particularly HUVECs, as a viable focus of research for several reasons.
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