From the desks of Val Bias and Joe Kleiber

NHF BOARD ELECTS NEW OFFICERS

The NHF Board of Directors elected new officers at the meeting held on June 27^th in New Jersey at the Newark International Airport Marriott, as follows:

·         Stephen Bender, Chair (Dix Hills, NY)

·         Shannon Penberthy, Vice Chair (Washington, DC)

·         Clifford B. Cohn, Esq., Treasurer (Villanova, PA)

·         Todd M. Pfeil, Esq., Secretary (Cross Plains, WI)

These individuals will serve through December 31, 2010.  Elections for full terms will be held at the Board of Directors meeting in November in conjunction with NHF’s Annual Meeting in New Orleans.

During the weekend, Board members and NHF Senior Staff participated in a retreat.  It was a great success, with collaborative interaction and a commitment between staff and volunteers to move NHF’s agenda forward together. 

NHF’s 62^nd ANNUAL MEETING—NEW ORLEANS, HERE WE COME!

Get ready for NHF’s 62^nd Annual Meeting, “Moving Forward,” set for November 11-13, 2010, in New Orleans, Louisiana. The host hotel is the New Orleans Marriott on 555 Canal Street.

After last year’s success in expanding our Chapter Track we are continuing this collaborative effort between the Chapter Staff Organization (CSO) and NHF’s Chapter Services Department. Several of the sessions will be facilitated by outside speakers. Sue Cowell and Lynne Capretto are serving as the CSO liaisons to NHF for the Annual Meeting.

Get ready for a full Thursday–we heard you when you asked, “Why does the opening session start on Friday morning after we just had a full day of programming on Thursday?”  We completely agree and that is why we are kicking off the Annual Meeting with programs on Thursday and the official Opening Session on Thursday afternoon.   

Chapter Track Highlights:

Thursday, November 11

·         NHF Update: We will kick off the NHF Annual Meeting by getting updates from NHF CEO Val Bias and the NHF Senior and Regional Staff, to include NHF’s ACT initiative—Access to Care Today, Achieve a Cure Tomorrow. 

·         CSO Business Lunch:  The guest speaker is Laurie Kelley who will present on "Donating Factor via Facebook: Pitfalls and Protocol." 

·         Managing Your Board: It’s Not Rocket Science: During this session we will focus on budgeting for your organization, board recruitment and relations, conflict of interest and dual relationships. We will also talk about establishing guidelines for board members and establishing healthy relationships.

Friday, November 12

·         Using Social Networking to Market Chapter Programs: Working with Your Consumer Board: Everyone seems to be using social network sites like Facebook, Twitter or YouTube. Social media can assist in marketing your programs, keeping in touch with donors, and improving staff recruitment and retention. Learn the concepts of inbound marketing and how to develop your social media strategy.

·         Advocacy for Chapters: During this session we will focus on successful state advocacy initiatives undertaken by chapters. Executive directors from three chapters will share their varied experiences in the area of advocacy addressing specifics such as who, what, how and why.  

·         Programming Roundtables/Action Plans: Chapter leaders are invited to attend this interactive roundtable session where you will learn how to create an action plan for your chapter based on your needs. Action plan topics include creating a youth program, a women’s group, and business plans for different size organizations including information on development plans, policies and procedures, employee benefit structures and needs assessments. 

·         The X Factor:  Chapter leaders are invited to the performance of a powerful new play that creates a community experience around hemophilia with the goal of educating, inspiring and affirming all participants. You will learn how to bring this play to your community as a potential tool for awareness and self-empowerment.

Saturday, November 13

·         HTC, Chapter and Consumer Panel: Working Together –The Elephant in the Room: Join us for a lively discussion on communications between the HTC and chapter staff to assist bleeding disorder patients.  We will talk about why collaborations are important, communication techniques that work, the impact on the consumer and benefits from having a strong relationship. 

·         Fundraising Roundtables: Innovative Ways to Expand Financial Resources: Four roundtables will be available during this session and chapter leaders will have an opportunity to hear about direct mail, planned giving and corporate giving, how to develop a walk, social media and online fundraising, and communications and branding an organization for the media.

·         Determining the Success of Your Chapter:  During this session, chapter leaders will learn about the benefits of evaluating their programs, the steps involved in planning and conducting the evaluation, and the factors that influence the success in outcome evaluation.

·         Working with Your Chapter Services Representatives: Chapter leaders will learn about what the NHF Chapter Services staff has been up to in 2010!  Discover ways to work with your Chapter Services Representatives with the opportunity to interact with them and request their services.

Registration: As a continuing benefit of chapter membership, each NHF chapter is eligible to receive two complimentary registrations. Please download the registration form (online registration will not work) from NHF’s Web site, complete and mail or fax to Sonia Roger, NHF Education Coordinator: 212.328.3799. To save 15% on registration fees please encourage additional individuals to register online before Monday, August 2, 2010.

Accommodations: Sleeping rooms at the New Orleans Marriott have been reserved (per chapters’ previous requests) through NHF’s Meetings Department via a Web-based reservation system.  Each chapter has been provided with its own unique Web address and password to manage its own reservations.  Any questions should be directed to Katie Hyon, NHF Meetings Specialist, 212.328.3706, khyon@hemophilia.org.

AWARDS OF DISTINCTION / AWARDS OF EXCELLENCE

NHF is pleased to announce the 2010 Annual Meeting Awards of Distinction in Programs and Awards of Excellence.  Please contact Amy Brown, NHF Education Coordinator: abrown@hemophilia.org, for your nomination packet. The packets can also be downloaded here.

Awards of Distinction in Programs

The Awards of Distinction in Programs recognize chapters with outstanding programs in health education, outreach and communications initiatives. Each chapter/association receiving an award will be given a $1,000 incentive to enhance its program. All programs must be chapter based.

Awards of Excellence

The Awards of Excellence recognize remarkable and distinguished individuals in the bleeding and clotting disorders community. Nominations will be accepted from NHF chapters, associations, hemophilia treatment centers, and NHF volunteers and members.

Included in the Awards of Excellence are the NHF Chapter Recognition Awards. Every chapter is invited to nominate an extraordinary volunteer within their organization. This volunteer will automatically be recognized at the Annual Meeting ceremony, regardless of the selection process.

ANNUAL MEETING CHAPTER SLIDE SHOW

At this year's opening session, we would like to again highlight the achievements of our chapters.  Please send us photos from your camps, walks, meetings, programs, galas, advocacy days -- anything that shows your chapter doing what it does best.  Put your chapter on the big screen!  Please send your photos to Beth Marshall, NHF Manager of Production and Creative Services: bmarshall@hemophilia.org.

2010 NHF-BAXTER CLINICAL FELLOWSHIP AWARDEES ANNOUNCED

NHF is pleased to announce that two outstanding candidates have been awarded the 2010 NHF-Baxter Clinical Fellowship. The recipients are Rachael Grace, MD, Children’s Hospital Boston/Dana Farber Cancer Institute, and Brian Branchford, MD, Children’s Hospital of Denver.

Funded through the generous support of Baxter Healthcare Corporation, the NHF-Baxter Clinical Fellowship Program was conceived to address the need to attract new physicians to the field of nonmalignant hematology and further support quality training for these individuals at leading hemophilia and thrombophilia research institutions throughout the U.S. The program also aims to increase the number of skilled clinicians committed to hematology and provide them with broad-based training from a clinical and academic perspective.

As an NHF-Baxter Clinical Fellow, Grace will spend two years developing advanced skills in clinical hemostasis and clinical trial design under the mentorship of Ellis Neufeld, MD, PhD. Neufeld is Associate Chief of the Division of Hematology/Oncology at Children’s Hospital, Boston, and Professor of Pediatrics at Harvard Medical School.

As an NHF-Baxter Clinical Fellow, Branchford will be continuing both his clinical and research training under the mentorship of Marilyn Manco-Johnson, MD. Manco-Johnson is Director of the Mountain States Regional Hemophilia Treatment Center. 

The NHF-Baxter Clinical Fellowship provides up to $100,000 per fellow, per year. Since the program’s inception in 2003, 21 clinicians have been awarded fellowships by an independent review panel. Many graduates of this program have chosen to make a commitment to pursuing hematologic research and/or treating patients with bleeding and clotting disorders as their career. Baxter’s continued sponsorship of this fellowship program will support two additional fellows though 2011. 

NHF ANNOUNCES 2010 JUDITH GRAHAM POOL POSTDOCTORAL RESEARCH FELLOWSHIP

NHF is pleased to announce that this year’s Judith Graham Pool (JGP) Postdoctoral Research Fellowship recipient is Lacramioara Ivanciu, PhD, Children’s Hospital of Philadelphia (CHOP). Ivanciu has been a post-doctoral fellow in the laboratory of Rodney Camire, PhD, principal investigator of CHOP’s Thrombosis and Hemostasis Division, since May 2008.

Ivanciu’s funded research project, “FXa Variants for the Treatment of Hemophilia VIII,” will seek to better understand FXa variants and provide new clues on how to improve the biological response to vascular injury in bleeding disorders patients.

NHF’s JGP postdoctoral research fellowships were established in 1972 to promote projects in clinical and basic science research on biochemical and genetic aspects of hemophilia. Since its inception, NHF has funded 72 scientists for one- or two-year studies, which have produced vital insights into hemophilia and other bleeding disorders. These JGP fellows have played an important role in the development of better concentrates, improved methods of carrier testing and more detailed understanding of the genetics of hemophilia.

Learn more about the 2010 JGP Postdoctoral Research Fellowship Award

Make a donation in support of NHF's Research Program - select "research" tab 

VICTORY FOR WOMEN

NHF is pleased to announce our new women’s health and bleeding disorder initiative --Victory for Women with Blood Disorders, an exciting endeavor that builds upon and expands the former Project Red Flag. With the assistance and expertise of volunteers on our education/outreach committee, public awareness committee, and the Medical and Scientific Advisory Council (MASAC), the Victory for Women with Blood Disorders program will incorporate education, advocacy, and support for women diagnosed with a blood disorder as well as raising awareness among women who have not yet been diagnosed.  Our primary focus will be 18- to25-year-olds, moms of 13- to 18-year-olds and healthcare providers.

Victory for Women with Blood Disorders will be a comprehensive multilevel program that addresses all five levels of influence for health-related behavior: 1. Individual (knowledge, attitudes, beliefs), 2.Interpersonal (family, friends, peers), 3.Institutional or organizational (rules, regulations), 4.Community (social network, norms, standards) and 5.Public policy (policies and laws that regulate or support healthy outcomes)

The first step in developing a brand and preparing to launch a public awareness campaign has been to design the Victory for Women with Blood Disorders logo. We are working with the NHF Marketing & Communications Department to create a Web page for this program. We continue to provide resources and education opportunities to help chapters expand their capacity to serve women. Those efforts will all be enveloped within this umbrella program.

This is, indeed, a dynamic time for NHF as we move forward to create a brand that is identifiable and accessible to women. We thank the sponsors of this effort: CSL Behring, the Centers for Disease Control and Prevention, and Grifols.

Chapter Grants

We are excited to announce the Victory for Women (formerly PRF) grant recipients for 2010 – 2011.  The following chapters received funding to continue their Woman to Woman peer programs: Hemophilia Foundation of Michigan, Hemophilia Foundation of Illinois and Hemophilia of North Carolina.  Also, Hemophilia of Indiana, Inc., will be receiving grant funds to work with local schools to incorporate the curriculum “Anyone Can Have a Bleeding Disorder” into middle school science classes.  Thanks go to CSL Behring for sponsoring these grants.

For more information on Victory for Women, contact Kathleen Roach, NHF Regional Director of Chapter Services: kroach@hemophilia.org or Patrice Flax, NHF Manager of Education—Women’s Program: pflax@hemophilia.org.

WFH CORNER

(From our friends at the World Federation of Hemophilia)

Hemophilia 2010 World Congress

The XXIX International Congress of the World Federation of Hemophilia will take place in Buenos Aires, Argentina, from July 10-14. Visit www.wfh.org for daily updates about the Congress and to download Congress materials.

WFH on Facebook

Join the World Federation of Hemophilia (WFH) on Facebook to stay informed and connected with the bleeding disorders community. You can become a fan of the WFH at: www.wfh.org/facebook.  

For additional information, contact Sarah Ford, WFH Communications Manager: sford@wfh.org.

DEVELOPMENT DEPARTMENT CORNER

2010 Hemophilia Walk

The Spring/Summer season of the Hemophilia Walk program has been truly successful.  Three chapters have held their Walks and there are 11 more to go this fall.  Some highlights include:

·         Hemophilia Foundation of Northern California hosted more than 400 walkers and raised more than $82,000 as a first-year Walk site on April 17^th.  Participants strode along the beautiful shoreline in Berkeley and welcomed new members to their chapter.

·         On June 5^th, New England Hemophilia Association raised more than $104,000 and enjoyed the participation of 500 walkers in East Walpole, MA, as a first-year Walk site.

·         As a third year Walk site, New York City Hemophilia Chapter welcomed more than 1,000 participants to its event in Riverside Park on June 6^th in NYC and raised more than $196,000.

Congratulations to these three chapters on fun, festive and successful events!

In looking to the future, a Hemophilia Walk Advisory Board and a Task Force have been convened to assess key components of the Walk program.  Both the Advisory Board and the Task Force are composed of Executive Directors and Local Event Managers from the current participating Walk chapters.  The Advisory Board will work with the Task Force to review the current Revenue & Expense Sharing System.  In addition, the Advisory Board will develop a 3- to 5-year strategic plan for the program, and work on components for a comprehensive Walk Training program.  Thanks to the many individuals involved in these committees for their time, support and energy.

NHF thanks National Presenting Sponsor Baxter, National Milestone Sponsor Bayer HealthCare, National Supporting Sponsor Pfizer and National Event Sponsor Talecris Biotherapeutics. 

REMINDER - 2010 Philanthropist of the Year Award

This is a chance to bring your incredible donors and volunteers to the forefront by honoring their hard work and dedication.  We look forward to receiving your submission (one nomination per chapter).

Please note:  the deadline for receipt of nominations is Monday, August 30^th, 2010.

If you have any questions, please contact Melissa Dolman, NHF Annual Giving Manager:  212.328.3722 or mdolman@hemophilia.org

UPDATED CHAPTER EVENTS CALENDAR

Updated Chapter Events Calendar for 2010. For those chapters that haven’t submitted their calendars yet, there's still time to do so!  We'd like to continue to include an updated Chapter Calendar in each Chapter Update. Please forward current information to Dawn Rotellini, NHF Regional Director of Chapter Services: drotellini@hemophilia.org.