8-29-2013 This summer I was invited to Camp Independent Firefly in Big Bear, California. The Nevada Hemophilia Chapter has partnered with Candlelighters Childhood Cancer Foundation of Nevada to provide children with the best summer camp experience possible. There were approximately 300 campers and staff in attendance with a host of Camp activities including Horseback riding, petting zoo, mountain biking, banana boat rides, daily water wars, and the coveted GaGa. The experience brought back memories of Camp HONOR and how awesome our camp community is. I really appreciate the opportunity to spend time with childhood cancer survivors and hemophiliacs alike while listening to their stories, struggles, and achievements. It was truly an amazing experience!
Josh was born and raised in Phoenix, Arizona and has worked for non profits most of his life. As a child Josh’s parents, Jennifer and Richard Traulsen were very active in the camping community and spent years working at Camp Honor each summer, bringing Josh along to learn the ropes. Beginning in 2003, Josh spent 3 weeks each summer working with Camp Swift, a program dedicated to bringing underprivileged youth to camp, as a counselor and eventually unit head. Josh graduated Arizona State University with a degree in Non Profit Management and Leadership and a Certificate in Special Events Management and Urban Planning. While at ASU, Josh volunteered as the Volunteer Coordinator for the My Nana’s Best Tasting Salsa Challenge. For the past year Josh was with the East Valley Jewish Community Center as their Director of Children Youth and Camping but is happy to be a part of the AHA Team as the new Program Director! In his free time, Josh likes to rock climb, hike, bike, play guitar, and cook. He is a certified lifeguard and canoeing, archery, and climbing instructor and is hoping to bring some of his skills to new camp programs. He is looking forward to meeting all the members of our community as he plans events for all of our social programs and prepares for Camp Honor.
New Report Shows Real Benefits of the Affordable Care Act for the People of Arizona On July, 31 of 2013 the Obama Administration issued a new report highlighting the benefits of the Affordable Care Act for the people of Arizona. Thanks to the health care law, the 82% of Arizonanswho have insurance have more choices and stronger coverage than ever before. And for the 18%of Arizonans who don’t have insurance, or Arizona families and small businesses who buy their coverage but aren’t happy with it, a new day is just around the corner. “Soon, the Health Insurance Marketplace will provide families and small businesses who currently don’t have insurance, or are looking for a better deal, a new way to find health coverage that fits their needs and their budgets,” said Health and Human Services Secretary Kathleen Sebelius. Open enrollment in the Marketplace starts Oct 1, with coverage starting as soon as Jan 1, 2014. But Arizonafamilies and small business can visit HealthCare.gov right now to find the information they need prepare for open enrollment. The health care law is already providing better options, better value, better health and a stronger Medicare program to the people of Arizona by: Better Options The Health Insurance Marketplace Beginning Oct 1, the Health Insurance Marketplace will make it easy for Arizonansto compare qualified health plans, get answers to questions, find out if they are eligible for lower costs for private insurance or health programs like Medicaid and the Children’s Health Insurance Program (CHIP), and enroll in health coverage. By the Numbers: Uninsured Arizonans who are eligible for coverage through the Marketplace. · 947,878 (18%) are uninsured and eligible · 695,083 (73%) have a
PEN 05.13 A Project Share Story Zoraida Rosado Project SHARE had another banner year providing blood-clotting medicine to developing countries. In 2012 we donated 5.6 million IU of factor, valued at $5.6 million, to 34 countries. Through these donations, we were able to provide relief to hundreds of people with bleeding disorders. We also donated NovoSeven, valued at $427,000, to 6 countries. In a major contrast with past years, most of our donations in 2012 went to Latin America and the Caribbean. SHARE visited Zimbabwe in December—our fourth trip there. Laurie Kelley also visited Zambia, making the first official visit by a hemophilia program there. She met with a newly formed hemophilia organization and submitted an assessment report to the World Federation of Hemophilia (WFH). SHARE provided $1,000 in funds to help the Haemophilia Foundation of Zambia (HFZ) create business cards and letterhead stationery. Our deepest thanks go to all who have donated factor to Project SHARE, especially those who donated in memory of a loved one. Project SHARE is also grateful for the continued financial support of our corporate partners in 2012: • ASD Healthcare • Baxter Healthcare Corporation • CSL Behring • New England BioLabs • Novo Nordisk Inc. • Octapharma
PEN 05.13 Inhibitor Insights Jo Schaffel If you live with inhibitors, you know how complicated life can be. You or your child may be on several different medications and have a demanding treatment regimen. You may have several appointments a week at your hemophilia treatment center (HTC). On top of that, you have all the other responsibilities of parenthood. The mobile apps profiled in this issue of PEN are designed to help organize your life and make it easier to track doctor appointments, treatments, bleeds, and medications. How well do they work if someone in your family has an inhibitor? Benefits of Mobile Apps For years, many parents, caregivers, and patients have tracked factor usage and bleeds on computer spreadsheets or with pencil in a paper logbook. These methods work well for many people, but they have limitations. Mobile apps are a more convenient method for keeping track of bleed data. These software applications are designed to run on smartphones, tablet computers, and other mobile devices. The benefits? Tech-savvy teens and young adults (who often seem to be attached to their cell phones) might prefer to use apps to track their info rather than fill out an entry in a logbook or use a computer. Plus, data on bleeds stored electronically is easier to transmit to a doctor quickly in an emergency. Some health insurance companies require detailed information about infusions: time, date, brand, lot number, bleed type, and dosage. A mobile app can help you keep track of all this info and make it easier to share with caregivers. And if you’re away from home, it’s easier to enter or scan product data and bleed info into a mobile app than
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 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.
Nicole Wheeler Nicole has worked in numerous non-profits including American Cancer Society, Lymphoma Research Foundation and the Wellness Community. Her non-profit experience focuses in donor cultivation and fundraising events such as Walks, Golf Tournaments, Galas, Fashion Shows, Car Shows, and more. A native to Arizona, Nicole has a passion for building relationships with people in our community and raising funds to support those in need. Nicole recently bought her first home! She spends a majority of her spare time remodeling it with her 9-year-old son, Dylan. Nicole and Dylan love do-it-yourself projects and a good challenge! Nicole also enjoys playing kickball in a competitive adult league, hiking and country swing dancing any chance she gets. When she’s not working or spending time on her house, she plans 10, 20 and 30 year high school reunions in the valley, which is typically quite entertaining!Nicole looks forward to utilizing her experience to help the organization grow its current events and hopefully add more that will increase our fundraising opportunities as well as continue to develop relationships within the community!
We had a great turnout this last saturday for the BleedHERs brush party masterpiece art class. Look at our talented BleedHERs original works of art! Congratulations Marleen for winning the art masterpiece challenge! Beginning stages Budding artists Tania working on her masterpiece Sarah and her mom's project in the works Michelle contemplating her next move Beautiful! Yolanda showing off her beautiful masterpiece! Elizabeth hard at work Julie concentrating BleedHERs finished projects! Thank you lovely ladies for bringing your talent and enthusiasm to this great event!
Carmella (Millie) Dillman, our new Resource Coordinator, will use her experience from working in case management services and the skills she acquired while studying for a Master’s in Library Science to seek out great partnerships and resources for the community. With a background in nonprofit programming including Volunteers of America and Americorps, Millie has had experience working with community organizations and understands the value of the collaborative effort it takes to provide the best possible service to the community. In her spare time, Millie enjoys making jewelry (she has a shop on Etsy), reading, writing, and spending time with her husband and 2 and a half year old daughter. Millie is originally from Pennsylvania, but is thrilled to have relocated to the Phoenix area with her family after her husband was assigned a Health Professionals Recruiter position in the Air Force. After her first week of working with the AHA, Millie participated in this year's successful My Nana's Salsa Challenge. Using the trial by fire method, Millie has caught the contagious passion each member of the staff has for the organization. Seeing the incredible relationship the members of the community have with the organization and the strong bond the staff has with each other, Millie feels extremely grateful to have become part of the team.