Hemophilia Headlines

The Hemophilia Foundation of Oregon has a new logo, and has moved. Our new contact information is:

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

JUNE 2015

Find Us on FacebookWant 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.

Upcoming Events 2015JUNE:

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

What’s Happening with SUPPORT GROUPS

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.

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

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

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!

HFO WebsitePlease visit our website www.hemophiliaoregon.org and register as a member to

receive information regarding upcoming events and programs. Thank you.

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-run-

5-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.

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.

For more information about the Walk go to our Walk sign-up page at:

https://secure.e2rm.com/registrant/LoginRegister.aspx?eventid=160363&langpref=en-

CA&Referrer=direct%2fnone or contact HFO at admin@hemophiliaoregon.org.

Oregon Bleeding DisordersWalk& Run For Our Lives/The Bloody Run 2015

HFO Mission StatementThe 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.

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

10

456 SW Monroe Ave. #102

Corvallis, OR 97333

How Can You Help the Walk?

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 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.

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.

An Opportunity Not to be Missed

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.

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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!

Mark your calendars...

October 25, 2015

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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.

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.

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.

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.

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.

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.

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!

Don’t miss the 3rd annual Oregon Bleeding Disorders Walk and the Bloody Run on June 27!

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© 2014 Accredo Health Group, Inc. | An Express Scripts CompanyHEM-00076c-052714 amc5305

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.

Caring for People 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/

A Big Thank You to the Friends of HFOThese friends of HFO have recently made generous donations:

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Thanks to our Friends of HFO!

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

Don Aina

Shirley Angell

Betty Cate

David C. Chvatal

Eric Eggers

Judith Garbutt

Frances Heffernan

Paul Jordahl

CHOICE = Community Having Opportunity to Influence Care

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