s w ie V d n a s w e N ia il h Hemop Spring Edition 2015 Chapter News Inside this issue: Program & Events Calendar 2 Hemophilia B Camp 5 Northern NV Family Weekend 6 Camp Independent Firefly 6 NHF Annual Meeting 6 Reno Ace’s Baseball Game 8 Men’s Retreat 11 Women’s Retreat 15 Washington Days 16 NV Advocacy Day 16 Walk 19 Dental Assistance 21 Board Members 23 Golf 4 the Kids 24 We have started off the year with a bang! Many of you participated in our State Advocacy Day, Washington Days, Women’s Retreat, and education dinners. Please see inside this issue for a wrapup on these exciting and successful events! On March 7th our Advisory Board of Directors participated in our annual Strategic Planning meeting. The day was facilitated and funded by the National Hemophilia Foundation. We spent the day charting the chapter’s future with an emphasis on how to raise more funds so that we can provide more programs to all of you. One of the strategies that came out of the meeting is to formalize volunteer committees and for this we look to you! Please consider volunteering for our Fundraising/Development, Walk, Advocacy or Marketing/Communication committees….Your chapter needs you!! At our meeting we also welcomed Eron Butler as our newest member. Eron jumped right in and will serve on our Marketing/Communication committee which is already hard at work on the Vision and Plan of Action for our chapter. Both Eron and his son have vWD. Welcome Eron! In January we had two of our longest serving board members retire, Mike Patchett and Dennis Flynn. Their dedicated service to the Nevada Bleeding Disorder community was extraordinary and we will greatly miss them. March 12th was Nevada’s Big Give. We received $2,110 in donations. Thank you! Please consider joining us for a Reno’s Ace’s baseball game on May 7th! All proceeds from this joint fundraiser with the HTC of Nevada are designated for Camp Independent Firefly. See page 8 for more information. RSVP Today! Spring Fest Education Day Saturday April 25, 2015 Spanish Translation will be available. Do you know someone who likes to golf or would like to get their company name out to the Nevada community….we have the event for you! Our Golf 4 the Kids tournament is set for June 1st at Red Rock Country Club. Please help by spreading the word, all proceeds help fund the many programs and events your family participates in. As the heat rises in Nevada, plan on attending our Spring Education Fest, Northern Nevada Family Education Weekend, Renee Paper Memorial Picnic and Camp Independent Firefly. Enjoy the beautiful weather and we look forward to seeing you soon! Page 2 Hemophilia News and Views Nevada Chapter of the National Hemophilia Foundation 2015 Program and Events Calendar Friday, April 17 World Hemophilia Day Saturday, April 25 Spring Education Fest Circus Circus Convention Center, Las Vegas, NV Thursday, May 7 Ace’s Baseball Game Fundraiser (Event with HTC of Nevada) Reno, NV Saturday, May 30 Men’s Retreat (HTC of Nevada event) 9:00 am – 4:00 pm Red Rock Resort & Spa Monday, June 1 Golf for the Kids Red Rock Country Club Las Vegas, NV June 12-14 Northern Nevada Family Education Weekend Elko, NV Saturday, June 20 Renee Paper Memorial Picnic Las Vegas, NV August 11-15 Camp Independent Firefly Fawnskin, CA August 13-15 NHF Annual Meeting Dallas, TX NHF Walks Reno Walk: Saturday, September 12, Virginia Lake Park Las Vegas Walk: Saturday, September 26, Floyd Lamb Park Spring Edition 2015 Page 3 Page 4 Hemophilia News and Views Spring Edition 2015 Page 5 Page 6 Hemophilia News and Views Northern NV Family Weekend & Camp Independent Firefly Please join us for our 5th Annual Northern Nevada Family Educational Weekend, Friday, June 12 – Sunday, June 14, 2015 in Elko, Nevada. The Northern NV Family Education Weekend is free of charge and provides families affected by bleeding disorders an opportunity to bond with their families and peers. Participants will have a chance to meet others in their home state that are experiencing some of the same health issues, helping them to develop a stronger support system and benefit from the emotional health of individuals within a family unit. We will also have a fun-filled day camp for children 4 and up. The kids will be participating in swimming, games, arts & crafts and more. Once again, a chartered bus service will be provided from Reno and Winnemucca to Elko. If you have any questions or to RSVP contact Lisa at 775.657.8399 or [email protected] or Anne at 702.564.4368 or [email protected] The chapter has received the most requests for camper application ever! For those of you that have submitted your request form, we will be sending out the camper application in early April. It is imperative that we receive your camper application back by June 1, 2015. The camp committee is busy planning for another exciting camp this summer. Our theme this year is “Camp Looney Tunes.” NHF's 67th Annual Meeting Educational Participant Grants Available The National Hemophilia Foundation's (NHF's) 67th Annual Meeting, "Boots on the Ground," will be held August 13-15, 2015, in Dallas, Texas. NHF is offering Educational Participant Grants to pay for airfare and hotel. If you would like to apply go to: www.hemophilia.org/Events-Educational-Programs/Annual-Meeting Grant must be completed online by Friday, May 1, 2015. If you have questions or have applied, please let us know! Spring Edition 2015 Page 7 Page 8 Hemophilia News and Views Spring Edition 2015 Page 9 Page 10 Hemophilia News and Views Spring Edition 2015 Page 11 Page 12 Hemophilia News and Views Spring Edition 2015 Page 13 Page 14 Hemophilia News and Views Spring Edition 2015 Page 15 Women’s Retreat The Chapter held its annual Women’s Retreat February 6 & 7 in Henderson, NV. We broke the all-time attendance record with 37 women and teens attending. On Friday evening Dr. Bernstein spoke to the group about “Changes in the Landscape of Care for Women with Bleeding Disorders”. Thank you Dr. B.! On Saturday, everyone enjoyed a delicious breakfast and got to know each other a little better. Then we were off to our first session on self-advocacy and the challenges of living with a bleeding disorder. The second session was all about relieving stress! Stress management, learning to prioritize, humor and stretching techniques were enjoyed by all. After lunch, we wrapped up with a round table discussion on “How can the foundation better serve women with bleeding disorders”. We ended the retreat with a treat….everyone enjoyed a manicure or pedicure! Thank you to our sponsor, CSL Behring. We would also like to thank the Hemophilia Treatment Center of NV & BioRX. Follow us on Social Media! Like us on Facebook! facebook.com/NHFNV Follow us on Twitter! @NVHemophilia Subscribe to our YouTube Channel! NHFNevada Page 16 Hemophilia News and Views NHF Washington Days Nothing About Us Without Us, Coming Together as One Voice--Washington Days 2015 Our Chapter attended the NHF 2015 Washington Days February 25-27, 2015 and was represented by Jerry Farler, Kelly Gonzalez, Jacey Gonzalez and Amber Federizo. This year we asked Congress to: Support maintaining funding for the federal hemophilia programs at the Maternal and Child Health Bureau (MCHB) and Centers for Disease Control and Prevention (CDC) in their appropriations requests. Co-sponsor Representative Aaron Schock’s (IL18) legislation to improve access to skilled nursing facilities (SNFs) for hemophilia patients in the House or introduce companion legislation in the Senate. Co-sponsor the Patients’ Access to Treatment Act (House) or introduce companion legislation (Senate) to increase access to life-saving drugs on specialty tiers by prohibiting insurers from imposing exorbitant co-insurance requirements on patients. Washington Days concluded with a State Advocacy Workshop. Advocates participated in an indepth discussion of three emerging trends and corresponding legislative efforts related to each that have the potential to affect the bleeding disorders community: out-of-pocket costs, preferred drug lists and standardization of prior authorization. Thank you Jerry, Kelly, Jacey and Amber for being the voice for the Nevada Bleeding Disorder Community. Nevada Advocacy Day at the State Capitol Thank you to everyone who participated in our 2nd Advocacy Day at our State Capitol. The day was a smashing success, with 27 adults and youth participating from both Southern and Northern Nevada. The day started with a meet and great breakfast with the Legislators and their staff. We met Speaker John Hambrick and Assemblyman James Oscarson, who is the chair for the Assembly Health and Human Services committee. Speaker John Hambrick will be visiting the Nevada Hemophilia Treatment Center to learn more about bleeding disorders this summer! During the individual meetings the participants educated their Legislators on bleeding disorders and how it impacts their lives, physically, emotionally and financially. The also discussed the need for greater access to healthcare providers and specialty pharmacies. If you are interested in joining the chapter’s Advocacy committee, please let us know. . Spring Edition 2015 Page 17 Page 18 Hemophilia News and Views Spring Edition 2015 Page 19 Registration is now Open! 2 Dates and Locations! Reno/Sparks: Virginia Lake Park Saturday, September 12th Las Vegas: Floyd Lamb Park Saturday, September 26th www.hemophilia.org/walk Page 20 Hemophilia News and Views Spring Edition 2015 Page 21 Dental Care Financial Assistance Now Available! The Hemophilia Treatment Center now offers dental care financial assistance for persons who are uninsured or under-insured. Preventative and emergent pediatric and adult dental care will be provided for patients in Las Vegas and Reno. All prospective patients will need to apply for financial assistance with the HTC. If you have questions about the program or would like to inquire about eligibility criteria, please contact Jay Hill at the Hemophilia Treatment Center of Nevada at 702.732.1956 or [email protected]. Page 22 Hemophilia News and Views Spring Edition 2015 Page 23 Are YOU a Future Board Member? The NHF-NV Advisory Board of Directors is currently seeking new members for. If you are interested or know of someone who interested in serving, please let us know. For more information on the role of Board Members or to apply, please contact the NHF-NV Executive Director Kelli Walters at [email protected] or (702) 564-4368. The Nevada Chapter of the National Hemophilia Foundation is dedicated to improving the quality of care and life for people with hemophilia, von Willebrand disease, and other inherited bleeding disorders through education, peer support, and advocacy. Staff Executive Director— Kelli Walters Chapter Administrator— Anne McGuire Advisory Board of Directors President-James Arriola Vice President-Marcela Custer Treasurer-Brandi Dawkins Secretary-Doug May Board Member- Erika Albini Board Member-Eron Butler Board Member-Shalinda Creer Board Member-Jerry Farler Board Member-Katrina Nicosia Hemophilia News and Views is published 4 times a year by the Nevada Chapter of the National Hemophilia Foundation (NHF-NV). We welcome advertisers. Please contact the office at 702.564.4368 for advertising rates. The material in this newsletter is provided for your general information only. The Nevada Chapter does not give medical advice or engage in the practice of medicine. NHF-NV does not recommend particular treatments for specific individuals and in all cases recommends that you consult your physician or local treatment center before pursuing any course of treatment. Hemophilia Foundation of Nevada National Hemophilia Foundation Primary Business Address Nevada Chapter Address Line 2 7473 W. Lake Mead Blvd. Suite 100 Address Line 3 Las Address Vegas, NV Line89128 4 NON-PROFIT ORG. U.S. POSTAGE PAID LAS VEGAS, NV PERMIT NO. 447 Phone: 702-564-4368 Phone: 702-564-4368 Fax: 702-446-8134 E-mail:[email protected] [email protected] E-mail: www.hfnv.org ACT—Access to Care Today Achieve a CURE Tomorrow Motto
© Copyright 2024