Letter From New ED, Amy Board!

From the Desk of Your Executive Director

To the Colorado Bleeding Disorder Community,

Well, I survived my first week and I’m diving head first into my second!  What an amazing organization we have.  I have felt incredibly supported by NHF, our Board of Directors, HTC staff, Chapter development coordinator Becca and of course departing ED, Emily Davis.  They have made this transition smooth and seamless, and I couldn’t be more grateful.

I am so excited to join the team here at NHF Colorado and I can promise you some exciting things are coming down the pipeline.  My focus through the end of the year, as determined by the Board of Directors, is to bring the community together.  Our Chapter is in a wonderful place.  The organization is strong, the programming is in a good starting position, all policies and procedures are in place and now…WE WANT TO HEAR FROM YOU! 

We want to hear from YOU what you’d like to see in your Chapter.  What interests do YOU have?  What education are YOU lacking?  What do YOU need in terms of community?  Do you feel like YOU are being listened to?  What does YOUR family want from your Colorado Chapter?

My job in the next 6 months…is to listen.

The Chapter will be conducting a series of Needs Assessments throughout the summer and into the fall to determine what areas we should be focusing on.  We are aware everybody likes to contribute in their own way so we will make those options available.  We will also make results public so you can see, firsthand, what our problem areas are and what we attend to work on.

Details of the assessment are coming soon…

We’ve done it.  We’ve made the steps to make the Chapter strong and sustainable and now…let’s bring everybody together.

con·nect 
 

1. to join, link, or fasten together; unite or bind.
2. to establish communication between; put in communication.
3. to have as an accompanying or associated feature.
4. to cause to be associated, as in a personal or business relationship: to connect oneself with a group of like-minded persons.
5. to associate mentally or emotionally.

Warmly,

Amy Board
Executive Director

Sign up for Mile High Summer Camp Today!

We Climb Mountains.

SAVE THE DATE

Mile High Colorado Camp

July 15-20 2012

Leadership Pre-Camp Retreat

July 13-15 2012

Camp forms are now available!  Click Here!

When and Where?

The Hemophilia and Thrombosis Center (HTC) is proud to once again sponsor the summer camp program at Rocky Mountain Village from July 15th – July 20 2012.

Who Should Attend?

  • Children with hemophilia or other bleeding disorders
  • Siblings of the above groups

Mile High Colorado Camp is for ages 7-18.  We accept 6 year olds on a case by case basis.  Programming is determined by age.  Check back with us soon to learn about the different programs we offer at camp!

Why Attend Camp?  

The purpose of camp is to learn about bleeding disorders, develop skills and have fun!  Campers will have the opportunity to meet new friends and participate in a variety of traditional camp activities.  As always, we have included educational components with the goal of encouraging self-confidence and independence.

Many campers have learned to perform self-infusion, experienced teamwork, and discovered new skills during the week of camp.  Staff at the Hemophilia & Thrombosis Center(HTC) and Rocky Mountain Villagewants this to be a wonderful experience that creates a wealth of fond memories for your camper.

What is the LIT program?

This year, we are excited to again offer the “Leadership In Training (LIT)” program for males affected with a bleeding disorder who are entering 9th grade to those who will graduate high school this spring 2012.  This year the LIT’s will begin their camp week on Friday July 13, 2012 and participate in a pre-camp wilderness experience through Breckenridge Outdoor Education Center(BOEC).

Participants must demonstrate the ability and desire to be strong leaders within  their communities.  Through service learning, we will build relationships within our group, as well as providing peer mentoring to the younger campers.

This program will take place at Rocky Mountain Village and will offer traditional camp activities in addition to the Leadership Training Curriculum.  For any questions about the leadership training, contact Amy Board at 303-724-2309, or through the toll-free number 1-888-724-7427.

What does it cost?

Each family is required to pay a non-refundable $75.00 deposit.   The remainder of the camp cost, approximately $1000.00 per camper, is underwritten by other sources.  If you have questions or need additional information, please call HTC Camp Director Amy Board at (303) 724-2309 or the toll free number at 1-888-297-0724.  Scholarship forms are available.  Scholarships will be granted on an individual basis.

How Can I Register my Child?

In an attempt to limit paper waste and mailing costs, this year all paperwork is available here on the Hemophilia Society of Colorado’s (HSC) website.  If you do not have access to a computer, please call the Hemophilia and Thrombosis Treatment Center (HTC) and we will mail the appropriate packet for your camper(s).  Camp forms will be available mid-March 2012. Stay Tuned!

                

 

Join us for Overcoming Challenges Workshop!

Join NHF Colorado in Denver & Grand Junction for Pfizer’s presentation covering a range of topics relevant to patients with hemophilia and their caregivers, including how to cope with chronic illness, how to best communicate with the health care team, and how to communicate with others regarding hemophilia.

Denver Program Details
  • When: May 17th from 6:00 – 8:00 p.m. Includes free dinner.
  • Where: Maggiano’s Little Italy, 500 16th St Ste 150, Pavilions Mall, Denver, CO 80202-4265. Free valet parking.
  • Cost: Free!
  • RSVP: By May 15 to (720) 336-0156 OR rsvp@cohemo.org

Grand Junction Program Details

  • When: May 19th from 11:30 a.m. – 1:00 p.m. Includes free lunch.
  • Where: Stay tuned!
  • Cost: FREE
  • RSVP: By May 17 to (720) 336-0156 OR rsvp@cohemo.org

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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)

Exciting Chapter Changes!

From Emily Davis, NHF Colorado Executive Director

It’s been a year and a half since I joined the Colorado Chapter of the National Hemophilia Foundation as the new Executive Director and we’ve had a lot of success at the chapter.

April 21 (Education Day in Colorado) will be my last day as the Executive Director for the Colorado Chapter. I’m THRILLED to share that Amy Board (formerly HTC Program Coordinator & Camp Director) will step into the role of executive director on April 25. This is very exciting and absolutely wonderful news for the chapter. Her new contact information will be aboard@hemophilia.org.

My leaving is not one of tension or negative circumstances; quite the contrary. I love working with NHF Colorado and it’s a bittersweet departure for me. I have decided to return full time to my nonprofit consulting work and focus on the promotion of my new publication.

In the last year and a half we have worked hard at the chapter to re-establish a strong foundation with systems, processes, fundraising efforts, communications, and a growing board. It is now the time for a new leader with the enthusiasm to take that work to a the next level. I have the utmost confidence that Amy, in collaboration with NHF, the board, and our volunteers, will be able to accomplish those goals. Her relationships within the community will surely be a wonderful thing for everyone.

I ask for your patience during this transition. It’s always a little tough to have new staff come into an organization and get caught up. Your support of the chapter – through volunteerism, encouragement, and feedback – will make a great difference.

It’s been a great pleasure to work with you and with the chapter. I’m honored to have been a part of it all!

Have questions, comments, or feedback? Email us here!

 

HFA State Updates

Many thanks to the Hemophilia Federation of America for this wonderful information!

Health care reform: States may test HHS power

New Jersey: State health insurance exchange OK’d

Missouri: Federal flexibility won’t persuade Missouri to set up insurance exchange system, Rupp says

Iowa: HIV insurance fix passes in the Iowa Senate

Louisiana: Today at the Capitol: Senators take first crack at state Medicaid overhaul

Minnesota bill to change HMO Medicaid requirements advances

Mississippi Builds Insurance Exchange, Even As It Fights Health Law

Florida: Clock ticking for governor to sign controversial Medicaid legislation

Kansas: KanCare oversight committee proposed

California: Health Insurers, Physician Group Oppose Ballot Initiative

Idaho Budget committee clears money to ready Medicaid for exchange

News Updates from HFA

Many thanks to the Hemophilia Federation of America for this great information about advocacy!

Final rules give states more flexibility to establish Affordable Insurance Exchanges
Health and Human Services Secretary Kathleen Sebelius announced policies to assist states in building Affordable Insurance Exchanges. The policies offer guidance about the options on how to structure Exchanges in two key areas:

  • Setting standards for establishing Exchanges, setting up a Small Business Health Options Program (SHOP), performing the basic functions of an Exchange, and certifying health plans for participation in the Exchange;
  • Establishing a streamlined, web-based system for consumers to apply for and enroll in qualified health plans and insurance affordability programs.

To read more about the new exchange regulations go here.

The Health Law and The Supreme Court: A Primer For The Upcoming Oral Arguments
Later this month, the high court will consider the fate of the health law. Here are key points to keep in mind while watching the action. Learn more about the upcoming case here.

Congressional Budget Office: The Effects Of The Affordable Care Act On Employment-Based Health Insurance
CBO and the staff of the Joint Committee on Taxation (JCT) continue to conclude that the Affordable Care Act (ACA), will lead to a small reduction in the number of people receiving employment-based health insurance and for many people to obtain health insurance coverage through their employers. In response to questions from Members of Congress, CBO and JCT have prepared an analysis showing how the effects of the ACA on health insurance coverage would differ under alternative assumptions about the behavior of employers. Read their analysis here.

Great Recession Accelerated Long-Term Decline of Employer Health Coverage
Between 2007 and 2010, the share of U.S. children and working-age adults with employer-sponsored health insurance dropped 10 percentage points from 63.6 percent to 53.5 percent, according, to a new national study by the Center for Studying Health System Change (HSC). Read the study here.

Edward Shanbrom, pioneering hematologist, dies at 87
Edward Shanbrom, was a pioneering hematologist who helped develop a breakthrough treatment for hemophilia and devised a critical blood-cleaning process that uses detergents to remove viruses from blood plasma. Read more about Dr. Shanbrom.

State Benefit Mandates and National Health Reform – National Institute for Health Care Reform (NIHCR).
From requirements that insurers cover prescription drugs to services of chiropractors, state health benefit mandates have a long and controversial history. Critics contend mandates drive up health insurance costs, while advocates assert they ensure access to important care. Federal guidance suggests that states can avoid mandate costs by choosing a benchmark option—for example a small-group plan—subject to state mandates. But, in some states, benefit mandates for nongroup plans—which are not a benchmark option—exceed mandates for small-group plans. States then must pay for mandates not included in the benchmark plan. However, even if states leave all mandates in place, their financial liability likely will be small. Read their analysis here.

Medicaid Watch: State Medicaid and Health Cuts & Expansions – March 2012
Read the latest issue here.

American Journal of Managed Care: Early Evaluations of the Medical Home: Building on a Promising Start
Researchers reviewed the current evidence on the patient-centered medical home (PCMH, or medical home), which aims to reinvigorate primary care. Researchers concluded that although the PCMH is a promising innovation, rigorous quantitative evaluations and comprehensive implementation analyses are needed to assess effectiveness and refine the model to meet stakeholders’ needs.  Read their study here.

CQ HealthBeat: HHS Considering Study on Blood Donation Standards for Gay and Bisexual Men
The Department of Health and Human Services wants input on how to design a study that would detail under what circumstances men who have a history of sex with other men should be allowed to donate blood. Under current Food and Drug Administration policy, men who have had sex with other men since 1977 are not allowed. Read about HHS’s study here.

Last Chance for Eligible Medicare Beneficiaries to Enroll in Part B
Beneficiaries who are eligible for Medicare, but who have not yet enrolled in Medicare Part B, have until March 31, or the end of the General Enrollment Period (GEP), to do so. The GEP runs from January 1 to March 31 of each year. Medicare Part B covers a range of services, including doctors’ visits, outpatient therapy, durable medical equipment and drugs including factor products are covered under Part B. Beneficiaries who enroll during this year’s GEP will have coverage effective July 1, 2012. These beneficiaries can also sign up for a Medicare private health plan, otherwise known as a Medicare Advantage plan, from April through June, with coverage beginning July 1. Read the Medicare Rights Center’s press release about the end of the GEP.

Building a Consumer-Oriented Health Insurance Exchange: Key Issues
As states develop insurance exchanges, their decisions have profound implications for consumers. This report covers three main areas where consumers intersect with the exchange. Read about the report here.

HFA Webinar Invitation – Messaging: Using influential words to make your case

From the Hemophilia Federation of America…

Webinar Invitation: “Messaging: Using influential words to make your case

WED, MARCH 21 — 7 pm eastern |6 central |5 mountain |4 pacific
Special presenter: Sherry Prowda, Director of Communications, The Herndon Alliance.

Everyone welcome – Forward this to a friend!    Register here.

Learn to advocate persuasively.  Know which words work (and which ones don’t).  Discuss how to apply the latest messaging research to our community’s issues.

Missed HFA’s January webinar on exchanges & essential health benefits?  Find all the webinar’s resources at ehb.hemophiliafed.org

For more information, contact Jonathan VanderBrug, HFA, at j.vanderbrug@hemophiliafed.org

Register today!