Category Archives: Women

Education Day Session Spotlight: Commitment to Wellness

We are really getting excited about Education Day 2012: Our Community Our World. We’re offering a range of topic this year including a Commitment to Wellness track. The sessions offer advice for anyone needing to practice self care.  Check out the sessions here and the times they will be offered.

Coming to Education Day? Don’t forget to RSVP to (720) 336-0156 or rsvp@cohemo.org!

Commitment to Wellness: The Practice of Self Care. Spring Cleaning Part 1

By Erin Stang, LCSW

Spanish interpretation available.

1:00 – 2:00 p.m.

Spring is here and the dust balls are piling up.  It is time to Spring Clean and get rid of all that clutter!  How does clutter impact your wellness?  Where do you find clutter in your life?  This session will help you explore the concept of clutter and how it affects your every day life. Part 2 is offered from 2:30 – 3:30 p.m.

Commitment to Wellness: The Practice of Self Care. Spring Cleaning Part 2

By Erin Stang, LCSW

Spanish interpretation available.

2:30 – 3:30 p.m.

Now that you have found those dust balls, the clutter your life, how do you clean them up?  How does decluttering impact your wellness?  This session will explore spring cleaning strategies to declutter and take advantage of what life has to offer.

Commitment to Wellness: The Practice of Preventive and Protective Care for Women with Bleeding Disorders

By RuthAnn Kirschman, WHNP-BC, MS

Spanish interpretation available

4:00 – 5:00 p.m.

You’ve begun to learn to live well with your bleeding disorder.  This session focuses on preventing disease and disease complications that could alter life spans through age-appropriate testing to predict when lifestyle changes would be helpful.  Bleeding disorders are a “forever” diagnosis, and the issues surrounding a bleeding disorder diagnosis are facts we will each live with every day.  Screening for and preventing disease is a layer of health that is an important component to living well with a bleeding disorder.

RuthAnn Kirschman, a women’s health nurse practitioner for over 30 years with experience in caring for persons with bleeding disorders, shares ways to prevent and test for many health-threatening diseases that do not require any special adjustments for women with bleeding disorders and will point out those areas of testing that do require special attention or treatment.  Living with a bleeding disorder requires healthful living for a long life.

This module is one of a 5 part program designed for the NHF Victory for Women COMMITMENT TO WELLNESS project and will be available through the Victory for Women website to use in presentations to all interested groups.  Funding for its development was made possible by a grant from the NHF Victory for Women project.

Join us for 2012 Education Day: Our Community Our World

Get out your pencils and paper and jump into the annual NHF Colorado and HTC Education Day on April 21, 2012. Being part of the affected community  means learning new research and resources as well as connecting with other community members – supporting each other and finding support.

NHF Colorado, the HTC, community members, and industry partners will provide a day full of educational sessions and discussions. There will be a series of sessions offered in Spanish or with Spanish translation. Participants will have an opportunity to interact with our corporate partners through a booth exhibit area, “booth bingo,” and hosted lunch table topics. Children’s programming will be provided throughout the day.

Thank you to our amazing supporters!

When: April 21, 2011 8:00 a.m. – 5:00 p.m.

Where: UC Denver Anschutz Medical Campus, Education 2 Building. Free parking available!

Schedule

  • 8:00 – 9:00: Registration and expo
  • 9:00 – 9:30: Welcome and chapter update
  • 9:45 – 10:30: Keynote presentation
  • 10:45 – 11:45: HTC Update
  • 12:00 – 1:00: Box lunch and expo/lunch discussions
  • 1:00 – 2:00: Three concurrent sessions
  • 2:30 – 3:30: Three concurrent sessions
  • 4:00 – 5:00: Three concurrent sessions

RSVP to: rsvp@cohemo.org or (720) 336-0156

Watch for many more details coming soon about sessions, kids’ programming and more!

If you are interested in volunteering to help plan this year’s Education Day please contact us at (720) 336-0156 or info@cohemo.org.

SESSIONS

9:00 – 9:30: Welcome and Chapter Update

9:30 – 10:30: Keynote Presentation by Chris Bombardier on his epic adventure with Save One Life in Africa

10:30 – 11:30: Update from the Hemophilia and Thrombosis Center (HTC)

1:00 – 2:00: Concurrent Sessions

  • Commitment to Wellness: The Practice of Self Care. Spring Cleaning Part 1 (Spanish interpretation available.)
  • Healthcare Reform: Managing Insurance as You Move into Adulthood (English)
  • First Steps: Hemophilia 101 (English)

2:30 – 3:30 Concurrent Sessions

  • Commitment to Wellness: The Practice of Self Care. Spring Cleaning Part 2 (English)
  • Health Care Reform: What You Need to Know (Spanish-speaking)
  • Healthy Lifestyle Choices (English)

4:00 – 5:00 Concurrent Sessions

  • Health Screenings (English)
  • Health Care Reform: What You Need to Know (English)
  • Healthy Lifestyle Choices (Spanish)

CO Women – Make Your Voice Heard

In 2011, NHF Colorado received funding to participate in the Victory for Women Initiative (VfW), an initiative by the National Hemophilia Foundation to increase awareness and care of women with bleeding disorders of all kinds including carriers. The Colorado Chapter wants to increase the quality of its programming for women as part of Victory for Women and beyond.

We are seeking feedback to help develop the programming to best serve the needs of women affected by bleeding disorders in Colorado. To participate in this evaluation of women’s programming and services in Colorado click here!

We need YOUR voice to help make our programs better every day. This online opportunity for feedback to the chapter will do just that.

Please share your feedback on later than February 24th. Many thanks to our evaluation consultant, Sarah Fischler with Mission Spark for making this evaluation possible.

Female Interviewees Needed – $10 Gift Cards!

NHF Colorado’s professional evaluator, Sarah Fischler from Mission Spark, is conducting intrviews by phone or email with women affected by bleeding disorders – including carriers. This evaluation is part of both the Victory for Women Initiative as well as the chapter’s evaluation of our overall programming for women in Colorado affected by bleeding disorders.

These are going to be short interviews (30 minutes) to obtain more detail about women’s experiences with women’s programming from the chapter overall, the women’s retreat, and the educational modules piloted at the last women’s retreat.

If you are interested in participating, please contact Sarah at sarah@missionspark.org or (303) 243-4783  before January 31, 2012.

Sarah will schedule interviews for February. We prefer to interview individuals by phone, but will have an electronic option available if necessary. As a little extra ‘thank you,’ we are giving a $10 Starbucks gift card to all of our interview participants!

Your opinions mean so much to the chapter in helping us better serve our community and our mission – please consider helping us out. All interviews will remain anonymous.

In summary…

  • 30 minute phone or electronic interview about women’s programming at NHF Colorado (all ages welcome!)
  • Contact Sarah Fischler by January 31, 2011 with your participation interest
  • Interviews scheduled in February
  • $10 Starbucks gift card as a thank you!

If you have any questions, please do not hesitate to contact the chapter or Sarah Fischler. Please be sure to spread the word – the more the merrier!

Women Focus Group Participants Needed

NHF Colorado needs your help in strengthening programs for women in Colorado and around the country. Women diagnosed with bleeding disorders or carriers are eligible for participation in this focus group conducted in Denver, CO. Please respond by October 10, 2011 to the contact listed below.

As part of the Victory for Women Initiative evaluation effort, a local consultant, JH Twinam and Associates, will be facilitating a focus group about a women’s educational modules the chapter is creating, to be replicated throughout the country in addition to programs and services the chapter provides for women.

The purpose of this focus group is to identify issues that need to be addressed in order for NHF Colorado to serve women in the bleeding disorder community through our educational modules on mental health as well as nutrition and medication. These efforts will strengthen our work in the community and help us better serve our mission:

The Colorado Chapter of the National Hemophilia Foundation is dedicated to finding better treatments and cures for bleeding and clotting disorders and to preventing the complications of these disorders through education, advocacy and research.

If you would like to participate or learn more about this focus group opportunity, please contact June Twinam by calling 303-759-4515 or sending an email message to her at columbineservices1@gmail.com no later than OCTOBER 10, 2011.

While the time and location of the focus group will be arranged after participants have been identified, it is expected this will occur within the next 2-3 weeks.

Thank you for building support for women affected by bleeding disorders all across the country!

September Programs and Events a Success!

awesomewomenhub.com

September brought a plethora of programs and events to the Colorado Chapter including Hemos Hispanic Heritage Day, Women’s Retreat 2011: Building Our Community, and the Western Slope 2011 Walk for Hemophilia.  All of the programs were a great success as a result of hard work and dedication from staff, volunteers, and of course, our donors!!!

Hemos Hispanic Heritage Day would not have been such a great program without the hard work of the planning committee and our funders, Baxter and the HTC!

The Women’s Retreat: Building Our Community was an opportunity to launch the pilot of our Victory for Women educational modules – thank you to RuthAnn Kirschman and Erin for presenting; to JH Twinam and Associates for evaluation; and the Victory for Women Initiative grant for supporting our ongoing work for women in Colorado and across the country.  The funding support from individuals donors, CSL Behring, Octapharma, Grifols, and the HTC was amazing and made so much of the day possible! We are looking for women to participate in a focus group in Denver in October. If you are interested, please contact us at info@cohemo.org before October 10.

The Western Slope Walk for Hemophilia included a small, but mighty group of volunteers and donors who dedicated their evening to celebrating and enjoying supporting the chapter. Sadly, the chapter Executive Director could not attend because of illness, but that didn’t stop this crew! A big congratulations to our Western Slope Top Fundraisers:

  • Top Personal Fundraiser – Callie Jensen
  • Top Team Fundraiser – Parker’s Western Pacers

The staff and board continues to learn so much about what works well for community members. We are evaluating every program and event to see what works well and what can be changed in the future.  It is because of YOUR feedback that we are able to make slow and sustainable changes to benefit the organizational mission.

In the coming weeks, photos and stories from these programs and events will be available online.  We encourage you to take a look and let us know what you think.

Join us for the 2011 Black and Blue Masquerade Dinner on October 22nd- tickets and tables are going fast! This is going to be an awesome event with lots and lots of entertainment throughout the evening including a live and silent auction.

Watch for a full 2012 calendar of events and programs coming out in November. Help us grow the chapter by spreading the word to your community. Thank you for all your great patience and support for the chapter as we continue to grow.

New Guidelines to Prevent Blood Clots in Pregnant Women

In August, The American College of Obstetricians and Gynecologists (ACOG) issued new guidelines to reduce the rates of maternal mortality from blood clots in pregnant women undergoing cesarean delivery. In the US, blood clots are a leading cause of maternal death.

The majority of blood clots in pregnant women are caused by venous thromboembolism (VTE) in deep veins of the leg.  According to ACOG, pregnant women are at a fourfold increased risk for thromboembolism when compared with nonpregnant women. The reasons for the increased risk during pregnancy include slower blood flow, compression of pelvic veins and decreased mobility. Other risk factors for VTE in pregnant women include having prior VTEs, smoking, high blood pressure and obesity.

The guidelines include recommendations that all women scheduled for cesarean section should undergo thromboembolism prophylaxis (preventive treatment) at delivery to prevent clots. These recommendations were published in Practice Bulletin #123, “Thromboembolism in Pregnancy,” in the September 2011 issue of Obstetrics & Gynecology.

“VTE is a major contributor to maternal mortality in this country,” said Andra H. James, MD, coauthor of the ACOG guidelines. She is a physician with the Obstetrics and Gynecology/Maternal and Fetal Division at Duke University Medical Center in Durham, North Carolina. “The risk of VTE is increased during pregnancy and the consequences can be severe. The recommendations explain how to monitor women for these events, address certain risk factors, and treat suspected or acute cases of VTE. It’s important for ob-gyns to adopt these recommendations to help reduce maternal deaths.” James is a member of the National Hemophilia Foundation’s Medical and Scientific Advisory Council.

The recommendations include the use of compression ultrasonography (imaging of deep structures of the body by measuring ultrasonic waves) to diagnose DVTs; anticoagulant medications, such as heparin, warfarin and low molecular weight heparin; and pneumatic compression devices (PCDs).

PCDs are inflatable garments, powered by an electric pneumatic pump, that inflate and deflate at certain intervals to help prevent thrombosis. “Fitting inflatable compression devices on a woman’s legs before cesarean delivery is a safe, potentially cost-effective preventive intervention,” said James. “Inflatable compression sleeves should be left in place until a woman is able to walk after delivery or — in women who had been on blood thinners during pregnancy — until anticoagulation medication is resumed.” One key component of the new recommendations is ensuring that anticoagulant therapies are continued postpartum, if needed–a time when clots can still occur.

Sources: Medscape Medical News, August 26, 2011; ACOG news release, August 26, 2011

Women’s Retreat Session Spotlight

Join us for the Women’s Retreat: Building Our Community on September 17 (registration due August 26) in Denver for a great day of interactive, educational sessions, sharing, and even some yoga!!!  Here’s a spotlight on one of the sessions being offered…

Women & Bleeding Disorders: More than Meets the Eye

There are a number of ways that bleeding disorders affect women.  We will spend this session talking about Von Willebrand Disease, platelet disorders, other bleeding disorders including carrier status in women.  Content will include the basics of what it means to have a bleeding disorder, how to translate your diagnosis, and the implications for your long-term health.  Join us for this unique opportunity to talk with Dr. Dietrich for a broader discussion, followed by question and answer, about women and bleeding disorders.

Want to register?  Be sure to register by August 26 to ensure your spot.  Registration fees range from $15 – $50 depending on your stay and scholarships are available!  Call (720) 336-0156 or email info@cohemo.org with questions or concerns and we’ll see you there!

Annual Conference Attendance Opportunity

NHF Colorado is excited to announce opportunities for three individuals from the Colorado bleeding disorder community to attend the NHF Annual Conference with $750 in support from the chapter!

The NHF Annual Conference will be held from November 10 – 12, 2011 in Chicago, IL this year. For all the details about the agenda, general facts and more visit the National Hemophilia Foundation website.

We are offering an opportunity for up to three (3) individuals/families from the local, Colorado community to join us for this unique experience.  NHF Colorado is offering a $750 stipend per family/individual whose application is approved.  Individuals and families are encouraged to apply by completing the application  and returning via email to info@cohemo.org no later than August 29, 2011. We will contact applicants prior to September 1, 2011 with our final decisions for conference attendees receiving funds.

Please and complete the application and return via email (scanned PDF file or Word document) or snail mail no later than August 29th (applications received after August 29th will not be considered) to either:

info@cohemo.org

OR

NHF Colorado

1536 Wynkoop Street, Box 26

Denver, CO 80202

The selection committee will review application before September 1.  We will need your quick response in gathering credit card and other information for room reservations from selected applicants. Preference will be given to individuals who have not attended the annual conference in the past.

Following the NHF Annual Meeting, attendees from the NHF Colorado chapter will be expected to submit a reimbursement expense form with related receipts within one month of the meeting. The chapter will reimburse participants up to $750 per family.

Download the application here.

For any additional questions, please contact NHF Colorado at info@cohemo.org.

Thank you to all the donors in the community who make this opportunity possible!

Women’s Retreat Session Spotlight!

NHF Colorado is proud to share information on one of the sessions being held at the 2011 Women’s Retreat and sponsored by Grifols!  Read below for details about this afternoon session, “von Willebrand Disease and Women’s Reproduction.”  Don’t forget that the Women’s Retreat is on September 17th and registration closes August 26th.  Be sure to register today!

von Willebrand Disease & Women’s reproduction

Presented by

About the Session: This session will provide a history of vWD, it’s diagnosis, laboratory testing and classification of subtypes.  The program will look at the current trends in the management of vWD including the consensus data on reproductive issues and pregnancy.

About the Speaker: Virginia Kraus RN MSN, is the Clinical Education Manager for Grifols USA, and has many years experience working with the bleeding disorder community and with Immunodeficiency disorders both in the hospital and home care settings.

Virginia received her diploma in Nursing from Bellevue Hospital, New York City and her Masters in Nursing from Anna Maria College in Massachusetts.  She has published several articles on the management of High impact/Low Prevalence Diseases.

Watch for more details soon on our blog and e-newsletter about sessions happening at the Women’s Retreat this year!