Hemophilia News and Views

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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!
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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
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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
lcervantes@htc4nv.org or
Anne at 702.564.4368 or
amcguire@hemophilia.org
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!
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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
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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.
.
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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
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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 jhill@cure4thekids.org.
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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 kwalters@hemophilia.org 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
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NON-PROFIT ORG.
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LAS VEGAS, NV
PERMIT NO. 447
Phone: 702-564-4368
Phone:
702-564-4368
Fax: 702-446-8134
E-mail:nevada@hemophilia.org
nevada@hemophilia.org
E-mail:
www.hfnv.org
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