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Hemophilia Foundation of Oregon Hemophilia Headl · PDF file 2019. 6. 14. · Hemophilia Headlines The Hemophilia Foundation of Oregon office: 10940 SW Barnes Rd. #129, Portland, OR

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  • Hemophilia Headlines

    The Hemophilia Foundation of Oregon

    office: 10940 SW Barnes Rd. #129, Portland, OR 97225

    phone: 503-297-7207

    fax: 503-297-0127

    email: [email protected]oregon.org

    web: www.hemophiliaoregon.org

    SEPTEMBER 2013

    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.

    Upcoming Events SEPTEMBER:

    September 12, 2013, 6:30pm, Family Support Group/Portland. At the Family Fun Center in Wilsonville.

    September 21 , 2013, 9:30am-3:00pm, Annual Meeting. At the Oregon Zoo Conference Center, Portland.

    September 21 , 2013, 3:00pm, Blood Brotherhood Meeting. At the Oregon Zoo Conference Center, Portland.

    NOVEMBER:

    November 3, 2013, 5:30pm, Shooting for the Stars, Portland, OR. Auction and Gala Affair. Location TBA.

    November 8-9, 2013, Women’s Retreat, Portland, OR. Location TBA.

    Virtual Walk -Easy as 1-2-3 ONE: Visit www.walkforhemophilia.com

    TWO: Create a virtual character and choose a message

    THREE: Select the OREGON Chapter, and help us with your support

    Sharing the Virtual Walk on Facebook or Twitter earns our chapter

    ONE additional walker. On the day of our chapter’s physical walk, one

    virtual walker created counts as TWO walkers!

    These are great opportunities to make an impact on our chapter’s ranking.

    Please be sure to get your friends and family to participate. Together we

    will help raise funds and awareness of bleeding disorders in Portland and

    across the country!

    Oregon Hemophilia Walk Recap

    Thank you, to all that helped make the first Oregon

    Hemophilia Walk such a resounding success! We were

    greeted by close to 300 walkers, a beautiful day, and

    the delights of both the White Rhino Marimba and

    Pride of Portland Chorus. We are close to our goal

    of $50,000 and we need just $10,000 more to reach a

    match of an additional $10,000. Now is the time to

    ask one more time your friends, families, and associates for one more give to the

    walk. Help us make this match! Go to www.hemophilia.org/walk/ and click on OR.

    You will find the donate button there. Checks can also come to the HFO office.

    For more information about the 2013 Oregon Hemophilia Walk, contact Madonna

    McGuire Smith at 503-297-7207 or e-mail to [email protected]

    Hemophilia Foundation of Oregon

    10940 SW Barnes Rd. #129

    Portland, OR 97225

    HFA Symposium Testimonial by Billy Conde Goldman

    This was my first time attending the HFA Symposium. Born in 1964, Gemini

    Dragon with severe hemophilia A. My entrance into the hemophilia community

    and meeting others with hemophilia is a recent process which I am navigating

    with curiosity, resistance and excitement.

    I attended the COTT Town Meeting—an inspiring participatory forum for

    communication and discussion. Passion and commitment and responsibility

    (response ability) in action. Changes in health care and insurance were

    discussed. A vigilance is needed to monitor these issues and COTT is

    doing that work. Also discussed was creating a national living memorial

    for people with hemophilia who have died of HIV/AIDS and hepatitis C.

    This is important for the hemophilia community and for the country. Such

    a memorial acknowledges those who have died and serves as a potent

    reminder for the ongoing importance of the safety of the blood supply for

    one and all. Long live COTT.

    On one of the breaks between programs I was fortunate to meet Gary and Karen

    Cross. Gary wrote Vial 023 which documents the life and death of his son Brad

    who had hemophilia and the involvement of Gary and his family and colleagues

    in the hemophilia/pharmaceutical company settlement. A powerful and moving

    memoir and hystory of the tainted blood tragedy.

    The symposium concluded for me with the Blood Brotherhood Rap Session.

    This was the largest gathering of people with hemophilia I have experienced.

    Everyone in the room had hemophilia. There were no doctors, nurses, social

    workers or parents who were involved in the community but did not have a

    bleeding disorder. Just people with hemophilia—from the Greek haima ‘blood’

    and philia ‘love’. A convergence of blood friends. Knowing that each person

    has lived with hemophilia provided a sense of community—together making

    for centuries of experience. Much to share with each other and much to learn

    from each other. I was reminded about the challenges presented by having just

    hemophilia and no co-infections. While there have been functionally significant

    advances in hemophilia treatment and care, physical, psychological and spiritual

    challenges remain. Hemophilia impacts the whole being and attention needs to

    be given to this full spectrum of needs. The Blood Brotherhood program is a gift

    and a valuable resource. May it continue to thrive.

    The HFA symposium was an awareness raising experience for me. Many thanks

    to the Hemophilia Foundation of Oregon and the Hemophilia Federation of

    America for financially supporting my presence.

    Grief is the binding alloy of the armoring about the heart. … Opening the heart to the mind’s pain, we find space to explore mercifully. … We enter directly into our grief, encouraging it to reveal its deepest nature. So we discover what lies beyond a lifetime of holding: our healing and the finishing of our most subtly unfinished business. —Stephen Levine

  • Annual Meeting Please join us for the 2013 Annual Meeting at the Oregon Zoo and Portland Children’s Museum

    Saturday September 21, 2013 9:30-3:00 pm

    We are thrilled to announce an Educational and Family Event. Join us for the Day!

    There will be an adult program including information on using social networks to

    develop better healthcare outcomes and information on how health care reform will

    have an impact on your life. There will be daycare for children under the age of 4,

    a children’s program for those aged 4-12, and a teen program for the 13-18 year

    old group. Join us for a vibrant program, lunch, and a trip to the zoo. Look for an

    active, fun-packed day. Bring the whole family. See you there. Questions contact

    Marita or Madonna at 503-297-7207 or email to [email protected]

    A ‘Trick ‘to the Immune System With Experimental Hemophilia B Gene Therapy

    In July, researchers at The Children’s Hospital of Philadelphia (CHOP)

    published the results of a study in which they used bioengineered decoys as

    a ruse to foil the immune system. This allowed for the successful delivery of

    gene therapy in mice with hemophilia B, or FIX deficiency. The lead author

    of the study was Katherine High, MD, director of CHOP’s Center for Cellular

    and Molecular Therapeutics.

    High and her team used capsids, the protein shell that encapsulates a virus, as

    the decoy. They also used adeno-associated viruses (AAVs) as delivery vehicles,

    or vectors, to carry the actual genetic material that triggers the production of

    factor IX. AAVs have recently become the “vector of choice” for researchers

    because they can deliver the genetic material into living cells to sustain

    therapeutic effect without causing disease. In addition, they can be targeted to

    liver cells, which manufacture FIX.

    However, one drawback in using injected AAVs is the body’s natural immune

    response. In some cases, antibodies are released, neutralizing the AAVs. To

    remedy that, investigators injected both empty capsids and genetically altered

    AAVs into the mice. The empty capsids effectively drew antibodies to them and

    away from the gene therapy.

    “This decoy strategy could be individualized to patients and could greatly

    expand the population of patients who may benefit from gene therapy,” said

    High. “Right now, 30 to 60 percent of adult patients develop antibodies that

    block the ability of an intravenously infused vector to reach the target cells

    in the liver. This approach holds the promise of overcoming this roadblock--

    pre-existing antibodies--and allowing successful intravenous gene therapy in

    virtually all adult patients.”

    This technique also proved effective in follow-up studies performed in rhesus

    macaque monkeys. The therapy initiated higher levels of factor IX production,

    with no adverse events reported. Although additional studies, including clinical

    trials in humans, will be necessary before such a therapy becomes a reality, the

    authors are encouraged by these preliminary findings.

    “Our results, which held up over a

    range of doses, suggest that in clinical

    studies, it will be feasible to adjust the

    ratio of empty capsids to gene vector

    doses, depending on an individual’s

    pre-existing level of neutralizing

    antibodies. That means we could

    personalize gene therapy to make

    it more efficient for each patient,”

    concluded High