Hemophilia Headlines - Hemophilia Foundation of Oregon

Hemophilia Headlines
456 SW Monroe Ave. #102
Corvallis, OR 97333
What’s Happening
with SUPPORT GROUPS
Upcoming Events 2015
JUNE:
June 19-21, 2015, Southern Oregon Family Camp, Medford/Gold Hills KOA
June 27, 2015, Run for Our Lives/The Bloody Run/Terpenning Recreation Complex,
Beaverton, registration 7 AM, Race 8 AM
June 27, 2015, HFO’s Annual Bleeding Disorders WALK/Terpenning Recreation
Complex, Beaverton, registration 9 AM, Walk 10 AM
June 27-29, 2015, Summer Teen Program/at Gearhart on the Oregon Coast
JULY:
July 9, 2015, Portland Support Group/Bullwinkle’s, Wilsonville
July 25, 2015 Eugene Support Group/Annual Beach Day, Newport, OR
AUGUST:
August 2-8, 2015, Camp Tapawingo/near Falls City, OR
August 13-15, 2015, National Hemophilia Foundation Annual Meeting/Dallas, TX
SEPTEMBER:
September 10, 2015, Portland Support Group/Bullwinkle’s, Wilsonville
September 13, 2015 Eugene Support Group/TBA, Eugene, OR
September 19, 2015 HFO Annual Meeting/Oregon Zoo, Portland
Find Us on Facebook
Want to know what is going on with the Hemophilia Foundation of Oregon?
Check out our facebook page Hemophilia Foundation of Oregon ‘like’ us and
you will be kept up to date on all the happenings.
HFO Website
Please visit our website www.hemophiliaoregon.org and register as a member to
receive information regarding upcoming events and programs. Thank you.
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OCTOBER:
October 8, 2015, Plasma Facility Tour , Portland and dinner provided by
Grifols, TBA
October 15, 2015, Dinner and Program, provided by Biogen, TBA
October 23, 2015, Southern Oregon Support Group, Medford Hampton Inn
October 25, 2015, Shooting for the Stars Fundraising Auction, MAC, Portland
NOVEMBER:
Nov. 12, 2015, Portland Support Meeting, Bullwinkle’s Family Fun Center, Wilsonville
Nov. 13-15, 2015, Women’s Retreat, TBA
Nov. 20, 2015, Southern Oregon Support Group, Medford Hampton Inn
Nov. 22, 2015, Eugene Support Group, TBA
DECEMBER:
December 20-21, 2015, Teen Program, TBA
If you have not attended a support group before we
encourage you to attend one that is convenient to you.
Come meet others in your area who share your experiences
and concerns with bleeding disorders. Most support group
meetings consist of short fun programs, free dinner, and
relaxed no-stress conversation. They are enjoyable evenings
and they are always open to all ages and stages of life. If
these locations don’t work for you contact us at admin@
hemophiliaoregon.org and we can work on starting a group
in your area. Some support groups also do a fun summer
event such as camping or a day at the coast in addition to
regular meetings.
office: 456 SW Monroe Ave. #102, Corvallis, OR 97333
phone: (541) 753-0730
fax: (541) 753-0727
email: info@hemophiliaoregon.org
web: www.hemophiliaoregon.org
We meet every other month at Bullwinkle’s Restaurant
and Family Fun Center (29111 SW Town Center Loop W,
Wilsonville, OR 97070), where we have pizza and salad,
enjoy a program and conversation, and let the kids go play
in the Family Fun Center. Kids love our support group
because of this! Our next meeting will be July 9 at 6:00 PM.
Other meetings are scheduled for Sept 10 and Nov 12 this
year. Contact us at portland@hemophiliaoregon.org for
more information.
Southern Oregon Support Group
HFO Mission Statement
The Hemophilia Foundation of Oregon enhances the quality of life for individuals
with bleeding disorders and their families through advocacy, assistance, outreach,
education, and research support.
Oregon Bleeding DisordersWalk
& Run For Our Lives/The Bloody Run 2015
Eugene Support Group
We will be having our Annual Beach event July 26th at
11am The Best Western Agate Beach Inn, located on Agate
Beach in Newport (3019 N Coast Hwy, Newport, OR
97365). Families and kids welcome. Come spend a day
on the Oregon coast!! We will have a large meeting space
available in the hotel where we will gather. Snacks and a
buffet lunch box will be provided at no charge. The chef is
able to accommodate special dietary needs so let us know
when you rsvp. A program will be provided and sponsored
by Sandy Puckett of Bio Rx. Please RSVP by July 22 to the
Eugene Support Group at eugene@hemophiliaoregon.org.
Regular meetings will be in Eugene on Sept 13 and Nov 22.
Portland Support Group
The Hemophilia Foundation of Oregon
has a new logo, and has moved. Our new
contact information is:
JUNE 2015
We are looking forward to our annual Southern Oregon
Family Camp June 19-21 at Medford/Gold Hill KOA where
we have educational programs, camping, swimming, arts
and crafts, and all meals provided! Contact Madonna
at admin@hemophiliaoregon.org for more information.
Regular meetings will be held at the Medford Hampton
Inn meeting room on Sept 25, Oct 23, and Nov 20. Please
contact us at southernoregon@hemophiliaoregon.org for
more information about our fun and welcoming group!
Join us for our 3rd annual Oregon Bleeding Disorders
Walk on June 27. The Walk will be held at the beautiful
Howard M Terpenning Recreational Complex at 15707 SW
Walker Rd in Beaverton. The Walk is one of our primary
opportunities to raise funds to support HFO programs and
services, as well as raise awareness about bleeding disorders.
The day begins with the Run for Our Lives-The Bloody Run which is a competitive 5 mile race
with prizes awarded in 7 age groups and top 3 overall male/female runners. Check in begins
at 7 AM and the race begins at 8 AM. Registration can be done the day of the race or online at
www.active.com/beaverton-or/running/distance-running-races/run-for-our-lives-the-bloody-run5-mile-2015
The fun Walk is 2.5 kilometers (about 1.5 miles) and winds around the Terpenning center on trails
and paths. All ages and abilities are welcome. Wheelchairs and dogs are also welcome. The
Walk begins with check-in at 9AM and the Walk starting at 10AM. Community members and
friends organize Walk teams who raise funds for their teams and proudly wear colorful team tshirts
as they walk together. There will also be a team tshirt contest and this is an area where you can
really let your creativity flow.
How Can You Help the Walk?
The day is about much more than running
and walking however. There will be food,
games, entertainment by the White Rhino
Band, prizes, give-aways, fun baskets to
bid on, face painting, exhibit booths, and
a chance to get together with the entire
bleeding disorders community in Oregon
and southern Washington.
1. Register a team and raise money for that team or register as an individual
2. Contact a potential sponsor (individual or Co.) and get a Walk donation
3. Make a personal donation to the Walk
4. Come to the Walk and bid on fun baskets For more information about the Walk go to our Walk sign-up page at:
https://secure.e2rm.com/registrant/LoginRegister.aspx?eventid=160363&langpref=enCA&Referrer=direct%2fnone or contact HFO at admin@hemophiliaoregon.org.
What’s Happening
at the HEMOPHILIA CENTER of OHSU
Skye Peltier, physician assistant, joined the hemophilia team in November 2014. She is very excited to be here and comes with 10
years of experience in bleeding disorders. As a native Minnesotan she is excited to seen green trees all winter!
She worked in adult Hematology/Oncology at the University of Minnesota and then moved to the pediatric Hematology/Oncology
program at Children’s Hospitals & Clinics of Minnesota. She earned a Public Health Masters Degree in Community Health Education
from the University of Minnesota in 1999. She worked as a health educator for TAMS (Teenage Medical Services) before going to PA
school. Skye has severe factor VII deficiency and has a special interest in rare bleeding disorders. She enjoys traveling and has done
medical volunteer work in Mexico and China.
Erin Stang, LCSW, is new to Oregon and OHSU Hemophilia and Thrombosis Center. Although she is new to Oregon, she is
not new to bleeding and clotting disorders. Ms. Stang moved to Oregon from Colorado where she was the social worker at the
University of Colorado Hemophilia and Thrombosis Center for 12 years. She worked with adults, children and families affected
by bleeding and clotting disorders. Ms. Stang is a licensed clinical social worker. She earned her bachelor degree in Social Work
at the University of Washington and Masters of Social Work at Denver University. Prior to her work in the field of coagulation
disorders, Ms. Stang worked for 18 years in a variety of health care, community- based, and criminal justice settings.
Ms. Stang is a mother of two sons, Tanner age 23 and Cole age 20. Both sons attend college in Colorado. She has a standard
poodle named Webster. Ms. Stang enjoys biking, hiking, kayaking, cross country skiing, snow shoeing, in addition to reading,
cooking, gardening and traveling.
To contact the Hemophilia Center of OHSU call 503-494-8716.
Super Volunteer
Kevin Finkle
Kevin Finkle has done an amazing job of raising huge amounts of money for the
Hemophilia Foundation of Oregon. At the 2014 NHF Annual Meeting, Kevin
participated in a contest in the Biogen booth and won $4,000 for HFO. At the 2015
HFA National Meeting, Kevin participated in another contest (see photo) and WON!
He raised $5,000 for HFO. Thank you so much to Kevin and everyone who has
helped raise money for HFO and keep our programs going strong.
Save the Date!
SHOOTING FOR THE STARS!
Join HFO for an evening of great conversation, fabulous food, exciting auction
items and lots of FUN! Each year we gather on the last Sunday in October
to raise money for the Hemophilia Foundation of Oregon and Hemophilia
Center at OHSU. This year the event will take place on Sunday, October 25
at the Multnomah Athletic Club (1849 SW Salmon St, Portland, OR 97205).
The festivities begin at 5:30 and dinner is served at 6:30 p.m. Look for more
information coming soon!
October 25, 2015
An Opportunity
Not to be Missed
Mark your calendars...
for October 8th for a rare opportunity to tour Grifol’s Talecris Plasma Center
in Portland. This busy Center collects human plasma and processes it for use
in many plasma-derived medications such as factor used in treating bleeding
disorders. This is a fascinating look at the process of making many life-saving
medications. Grifols will also be providing dinner after the tour. Watch for
further details to be announced.
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Let Your Voice be Heard
First Annual Oregon Bleeding Disorders Advocacy Day
The Hemophilia Foundation of Oregon hosted its first Bleeding Disorder Advocacy
Day in Salem on April 20, 2015. Nearly 70 HFO members attended and visits were
made with more than 40 elected officials. The day began with a briefing where
advocates were informed of current legislation that would have an impact on people
living with bleeding disorders. Groups of people with bleeding disorders were able
to tell their story and enjoy some productive conversation with their legislators. We
ended the day with a cake and ice cream social that was well attended by legislative
staff members as well as legislators. One Senate Committee even recessed for a few
minutes so the Senators could enjoy cake and ice cream!
On Monday, April 20, nearly 20 of HFO’s young adults/teens gathered at the Grand
Hotel in Salem to prepare for their visits the following day. Several adult chaperones
and trainers worked with the participants to put their story together and gain
confidence in telling their story. They discussed the legislative process and learned
how impactful their visit with elected officials could be if they were prepared.
Another Successful HFO Couples Retreat
Second Annual, at the Heathman Lodge
May 15 – 17, 2015 was a wonderful weekend for the Couples Retreat
at the Heathman Lodge in Vancouver, WA. Twelve couples gathered on
Friday at the Heathman and began a wonderful weekend of sharing and
learning together. The group enjoyed some tears, lots of laughter, and
wonderful bonding.
“Discovering Positive Lessons in Your Life” was the topic presented by
John Badalament from Inalex. Thanks to the generous support from
Inalex, Baxter and the Colburn-Keenan Foundation HFO was able to
provide this weekend free of charge to those who attended.
SAVE THE DATE
for 2016!
The Third Annual HFO Couples
Retreat will be held May 20 – 22,
2016, location to be announced.
Please join us!
Thanks for generous support from Baxter, Pfizer, and a PACT grant we were able to
put together a wonderful day that included very productive discussions about living
with bleeding disorders.
Save the Date for 2016 – we will be hosting a Bleeding Disorders Awareness Day at
the Oregon State Capitol in Salem on February 22, 2016.
Parents Empowering Parents
Training at Hood River Hotel
What is PEP? PEP is a program designed to
promote effective parenting skills to parents
of children with a bleeding disorder, and
to educate and support parents through
discussion. Trainers for the weekend
included Mina Nguyen (psychologist),
Robi Ingram-Rich, (nurse) and Erin Stang (social worker), all from the Hemophilia
Treatment Center (HTC); and Michelle Fernandez, parent from the HTC and
Hemophilia Foundation of Oregon (HFO).
Twelve people were able to gather in Hood River and spend a wonderful, educational
weekend sharing great stories and supporting each other.
The Hemophilia Foundation of Oregon and the Hemophilia Center hosted a
Parents Empowering Parents (PEP) Training at the beautiful Hood River Hotel,
Friday, April 10th through Sunday April 12th, 2015. Thanks to a generous
grant from PEP we were able to provide this wonderful training to our families
who are affected with a bleeding disorder.
For anyone who has attended PEP in the past three year, we are hoping to host
a reunion this fall. It will not be as extensive as the original PEP program but will
give us a chance to reunite and remember the wonderful parenting tips that were
shared with us during our original training. Look for more information on that
reunion in the near future.
Don’t miss the 3rd annual Oregon Bleeding Disorders Walk
and the Bloody Run on June 27!
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Caring for People
CHOICE = Community Having
Opportunity to Influence Care
With Hemophilia Around the World
One at a Time! HFO’s Board of Directors has decided
to personally sponsor a child through Save One Life.
Donations were collected from Board members at
May’s meeting to begin sponsorship of a young boy
in the Philippines who has hemophilia.
Meet HFO’s sponsored child- Clive Jacob Lagamot, age 3, from Cagayan
de Oro in the Philippines. Clive has Factor VIII Hemophilia and lives with his
mother, grandparents and uncle. The family earns about $100 a month. HFO’s
sponsorship of Clive will provide him with factor and education about his
bleeding disorder.
Save One Life is a nonprofit organization that offers sponsorships directly to
individual children or adults with a bleeding disorder in developing countries.
For about $22 a month, less than a dollar a day, a child can be sponsored,
provided with life-saving factor to treat their bleeding disorders, and offered
hope for the future.
For more information on donations or sponsorships with this
worthy organization go to http://www.saveonelife.net/
What is AmazonSmile?
AmazonSmile is a website operated by Amazon that lets customers enjoy the
same wide selection of products, low prices, and convenient shopping features
as on amazon.com. The difference is that when customers shop on AmazonSmile
(smile.amazon.com), the AmazonSmile Foundation will donate 0.5% of the price
of eligible purchases to the charitable organizations selected by customers. Look
for Hemophilia Foundation of Oregon when you shop.
CHOICE is a project driven by the Hemophilia Federation of America (HFA) and
supported by the Centers for Disease Control and Prevention. CHOICE collects
information through an online and paper-based survey. This survey gathers data
about the health experiences of people who have a doctor-diagnosed bleeding
disorder. HFA’s goal for the CHOICE project is to put the survey results to work
to improve the lives of those in the bleeding disorders community who do not
receive care at a federally-funded hemophilia treatment center. 481 surveys
have been completed as of April 14, 2015. Please take the CHOICE survey
today, and help us improve the lives of everyone with a bleeding condition.
www.hemophiliafed.org/choice
A Big Thank You
to the Friends of HFO
These friends of HFO have recently made generous donations:
Don Aina
Shirley Angell
Betty Cate
David C. Chvatal
Eric Eggers
Judith Garbutt
Frances Heffernan
Paul Jordahl
John Keiter
Ruth Kouides
William Malek
Jack McCann
Marlene Muchow
Brian Oylear
Susan Peterson
Laurie Pritchard
Ted Reutlinger
Carl Rocha
Cindy Secrest
Chris Selid
Mark Surbaugh
Dale Tschida
Michael Wagner
Thanks to our Friends of HFO!
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