NHF Colorado’s New Office!

South side of our office

Lots of great changes are happening at NHF Colorado these days including our move into a new office space!

Our new office is located within the JVA Consulting building in the Highlands, across from Sloan’s Lake. JVA Consulting is a nonprofit consulting firm that provides co-sharing space for small nonprofits.

North side of our new office

The location provides us with easy access to our Denver Walk for Hemophilia location at Sloan’s Lake, free parking, and proximity to the Highlands Rec Center – where we have been hosting many of our programs this year.

With the addition of a second part-time staff member, the office is a great resource for the chapter. We are sharing a single office with two desks and access to various amenities. We have access to conference rooms and even larger event space we can rent out. We’re excited about having the space and better services for the chapter.

Hope to see you around the neighborhood soon!

 

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.

Advocacy Day Registration Open!

Health Care Voices in the Community     (Colorado Advocacy Day)

Join the Colorado Chapter of the National Hemophilia Foundation on Saturday, February 25th for Health Care Voices in Our Community, Colorado’s Advocacy Day!  NHF Colorado is committed to advocating for the needs and perspectives of members of the bleeding disorder community. This program is a great opportunity to:

  • Learn about plasma donation facilities and see firsthand how a facility works through a staff-guided tour.
  • Become informed on healthcare reform and how it affects the hemophilia community.
  • Join an informal conversation about what you need to know about advocacy in Colorado.
  • Connect and engage with members of the community.

The day begins with an optional tour at the Grifols Biomat Plasma Facility and moves to the Highlands Recreation Center for lunch, speakers, and socializing. Leadership from the National Hemophilia Foundation and industry representatives will join a panel discussion on national healthcare reform and how we can best advocate for our community’s needs in Colorado. The presentation will be followed by a Q&A and opportunities to connect with members of the community.

The plasma collection site tour has a limited number of participants so respond as soon as possible to reserve your space. You are also welcome to join us for the luncheon presentation only. Please RSVP to rsvp@cohemo.org by Wednesday, February 22nd and specify whether you will be joining us for the tour, luncheon, or both and who will be in attendance. We hope to see you then!

WHAT: Health Care Voices in Our Community: Colorado Advocacy Day

WHEN: Saturday, February 25th, 2012

  • 10:30 – 11:30 Tour of the Grifols Biomat Plasma Donor Center, Aurora
  • 12:00 – 12:30  Lunch at Highlands Recreation Center, Denver
  • 12:30 – 2:00     Educational Session facilitated by Ruthlyn Noel, National Hemophilia Foundation
  • 2:00 – 2:30      Socializing

WHERE:

  • Plasma site tour: 8800 Colfax Ave., Lakewood, Colorado 80215
  • Advocacy discussion: Highlands Rec Center, 2880 Osceola, Denver, CO 80212

COST: FREE! Light lunch provided.

RSVP: Please RSVP to rsvp@cohemo.org or (720) 336-0156 by Wednesday, February 22nd. Let us know how many people will be joining you for the day including the site visit as well as the panel discussion.

Join us for the Power of Choices on March 15!

NHF Colorado is excited to announce a wonderful educational program in Denver sponsored by Baxter.  Read more below about the program details and important information!

  • When: March 15th 6:00 – 8:00 p.m. (dinner included!)
  • Where: Denver, CO (exact location TBD)
  • Cost: FREE!
  • RSVP: By March 10 to (720) 336-0156 OR rsvp@cohemo.org

About Power of Choices

Knowing more about bleeds, factor, and healthy options means you can make good choices that may improve your life. In this session learn about:

Monitoring your health such as healthy weight, strong muscles, and how your good nutrition help your joins and give you energy.

Educational resources and support including a wide array of educational resources and support that is available from your HTC/physician, hemophilia chapters, national and local support organizations, and therapy manufacturers.

What you need to remember including recognizing the signs of a bleed and being prepared to treat early and every time, knowing the details of your factor and work with your HTC/physician to develop a realistic treatment plan, and understand all the other ways you can work to promote good health.

About the Speaker: Suzi Greer R.N., B.S.N., Senior Clinical Specialist

Suzi has been a RN for 26 years obtaining her undergraduate degree from Illinois State University and has experience in Obstetrics, Pediatrics, Internal Medicine, GI, Developmental Disabilities, Bleeding Disorders, and Thrombophilia.

Suzi been in Hemophilia care for 12 year, four years as the Nurse Coordinator, at the Comprehensive Bleeding Disorders Center is Peoria, prior to joining Baxter as a Senior Clinical Specialist working with all clinical aspects of Hemophilia. During that tenure at the HTC Suzi’s main focus was on patient education such as venous, clinical research in all aspects of hematology (including Advate clinical trails) and patient advocacy (through schools, emergency departments, community agencies and the Hemophilia Foundation of Illinois).

As a senior clinical specialist with Baxter, Suzi works with clinicians and patients on development and implementation of educational materials and resources and then bring these resources to the hemophilia community.

Investigators Publish Two Studies Using UDC Data

A pair of studies in the December 2011 edition of the American Journal of Preventive Medicine highlighted some notable findings from data collected by the Centers for Disease Control and Prevention (CDC).

In the first study, “Insurance, Home Therapy, and Prophylaxis in U.S. Youth with Severe Hemophilia,” the authors reviewed data from the CDC’s Universal Data Collection (UDC) project, a voluntary surveillance system that relies on patient enrollment. The lead author of the study was Judith R. Baker, MHSA Department of Pediatric Hematology/Oncology, University of California Los Angeles.

Included in the study was a nationwide cohort of 3,380 boys and young men with severe hemophilia A or B, ages 2-20 years old, all of whom had received care at a federally funded hemophilia treatment center (HTC) between January 1, 2008, and December 31, 2010.

The results showed that 90% of patients used home therapy and 78% were on a prophylaxis treatment regimen. Only 2% were uninsured. Investigators found that those with health insurance were much more likely to be on prophylaxis (77%) vs. those who were uninsured (21%). The data also showed significant correlations between race, age, inhibitor status, and HTC use, home therapy use and prophylaxis.

“Youth with severe hemophilia who annually obtain care within the U.S. HTC network had a high level of health insurance, home therapy, and prophylaxis. Exploration of factors associated with insurance coverage and yearly HTC utilization, and interventions to optimize home infusion and prophylaxis among youth of African-American and ‘other’ race/ethnic backgrounds are warranted,” concluded Baker and her colleagues.

Investigators also drew on UDC data for the second study, “Physical Functioning in Boys with Hemophilia in the U.S.” The lead author was Paul E. Monahan, MD, Department of Pediatrics, Hematology/Oncology, University of North Carolina at Chapel Hill. Researchers reviewed 15 potential predictors of poor physical functioning in boys with hemophilia A and B (up to 18 years of age) who had received care at an HTC between 1998 and 2008.

They found that several characteristics were associated with limitations of joint function, including increasing age, presence of joint bleeding and inhibitors. African-Americans were also independently associated with activity restrictions. In addition, obesity and medical coverage with Medicaid, as opposed to private health insurance, were independently associated with multiple poor outcomes.

“Interventions focused on eliminating inhibitors, improving outcomes for African-American children with hemophilia, and maintaining healthy body weight are warranted. In addition, strategies are needed to assure adequate insurance coverage for all people with hemophilia to eliminate economic barriers to optimal functional outcomes,” the authors concluded.

Source: Obesity, Fitness & Wellness Week, January 7, 2012

Welcome New Staff!

The Colorado Chapter is thrilled to welcome our newest staff member, Rebecca Strelitz to the chapter staff! As a result of generous support from the funding community and the National Hemophilia Foundation, the chapter was able to hire Rebecca as a part-time Development Assistant.

The additional staff member should help the chapter to continue to provide better resources to the community and improve its service to the mission. We’re looking forward to community members meeting Rebecca.

Here’s some information about Rebecca…

Rebecca Strelitz

Rebecca began working with the Colorado Chapter of NHF in January of 2012 and brings with her several years of administrative experience. She is a currently pursuing her graduate degree in Environmental Policy and Management at the University of Denver and holds a BS in Business Administration from the University of Colorado at Boulder. She’s a native to the east coast but has been a Colorado resident for more than 20 years. She feels at home in the outdoors and currently lives in Denver with her two cats, Jackie and Sheena. In her free time she loves to cook, hike, and skateboard.

Welcome to Rebecca!!!

Read about our staff, by clicking here!

Valentine’s Day Party

NHF Colorado invites you & your family to a Valentine’s Day celebration!

The chapter would love for you to join us to make up the canceled December holiday party.  This is a chance to connect and learn about what has been happening with the chapter. Come meet up and socialize with staff, board, volunteers, and other families (from the HTC  too!).

  • When: Sunday Feb 12th 5:00 – 7:00 p.m.
  • Where: Highlands Rec Center, 2880 Osceola , Denver, CO 80212
  • Light dinner and activities provided
  • RSVP by Feb.8 to: rsvp@cohemo.org or (720) 336-0156
  • Cost: FREE!

We hope to see you there!

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!

Academic Scholarship Day with NHF Colorado

Join NHF Colorado for our Academic Scholarship Day on February 11th! Read more about the scholarship opportunities provided through the chapter!!

Annually, NHF Colorado sponsors Academic Scholarship Day  to learn about bleeding disorder scholarship opportunities locally and across the country; how to manage due dates; get tips for essay writing from experts; and more.  A group of successful students, guidance counselors and staff from the HTC will be in attendance to get you excited and motivated to apply for any number of scholarships.  This is YOUR future!!

  • What: Academic Scholarship Day!
  • When: February 11, 2012 at 11:30 p.m. – 1:00 p.m.
  • Where: Higlands Rec Center, 2880 Osceola, Denver, CO 80212
  • Cost: FREE!
  • RSVP: Email at rsvp@cohemo.org or (720) 336-0156

This is an informal afternoon to learn more about applying for scholarships. A pizza lunch will be provided – in true college fashion! ANYONE who is interested in scholarship writing should attend. This lunch is open to students of ANY age.

Feel free to bring any previous scholarship packets you have completed or current scholarship packets you are working on to ask questions and get some hands on help.  This is an exciting time of life!  Take control of YOUR future!

Research Breakthrough in Gene Therapy for Hemophilia B

Researchers from the United Kingdom (UK) and the U.S. have made a breakthrough in hemophilia gene therapy. In a recently published study, the team reported successfully treating six patients with severe hemophilia B. The lead author of the study was Amit C. Nathwani, MB, ChB, PhD, Department of Hematology, University College London (UCL) Cancer Institute, London.

The UCL investigators used adeno-associated viruses (AAVs) as delivery vehicles, or vectors, to carry the genetic codes that trigger the production of the factor IX (FIX) protein. FIX is deficient in hemophilia B patients. Ideally, AAVs deliver the genetic material into living cells to sustain therapeutic effect without causing disease or triggering significant immune responses.

Nathwani and his team reported that a single injection of the gene therapy activated the production of small amounts of FIX–enough to allow four of the six subjects to cease treatment with FIX concentrates. The other two patients continued treatment with factor products but needed less frequent infusions. The patients have continued to produce their own FIX for up to 22 months.

Over the last decade, one of the major focuses for researchers has been on developing optimal AAVs. These viruses are often favored because patients have little or no immunity to them. Further, AAVs often target liver cells, which manufacture FIX. One potential drawback is long-term viability as liver cells to do not live indefinitely and are slow to regenerate, which may affect the duration of the therapy.

The AAVs for this study were prepared by a team from the St. Jude Children’s Research Hospital in Memphis, TN. The patients were recruited and treated with the therapy by investigators at UCL. Study co-author Katherine High, MD, and fellow researchers at the Children’s Hospital of Philadelphia, are monitoring the study for any immune reactions.

High’s laboratory has been conducting gene therapy clinical trials for hemophilia for more than a decade. “I think it’s incredibly exciting, and I say that even though these people are my competitors,” said High.

According to Edward G.D. Tuddenham, MB, BS, MD, director of the Hemophilia Center at the Royal Free Hospital in London, 20 additional patients will receive the therapy to help determine the optimal dose of the AAV. The aim is to deliver the highest possible dose while circumventing an unwanted immune response. “We are pretty close to the sweet spot,” explained Tuddenham. “If all goes well, a genetic treatment for hemophilia B could be available for widespread use in a couple of years.”

The study, “Adenovirus-Associated Virus Vector–Mediated Gene Transfer in Hemophilia B,” was published online on December 10, 2011, by The New England Journal of Medicine.

Source: The New York Times, December 10, 2011