Comprehensive Health Education Services Receives Novo Nordisk Educational Grant for Third Inhibitor Family Camp

Norwell, Massachusetts (December 16, 2011) – Comprehensive Health Education Services, an innovative provider of healthcare related corporate trainings and community educational events, today announced that they have received an educational grant from Novo Nordisk to present the third Inhibitor Family Camp. The camp, slated for April 13-15 at Painted Turtle in California, will allow families living with active inhibitors from across the country the opportunity to come together in a safe and relaxing environment to learn and share with one another.

Janet Brewer, CEO of Comprehensive Health Education Services believes that a, "Family Inhibitor Camp will deepen the sense of belonging for families living with inhibitors that is missing in the hemophilia community. The very nature of a camp environment creates a fun, relaxed environment that encourages education and support through personal connections with peers."


Bayer HealthCare Provides Nearly $2.5 Million to Advance Hemophilia Research and Patient Care

WAYNE, NJ, July 28, 2011 – Bayer HealthCare today announced the 2011 recipients of the Bayer Hemophilia Awards Program (BHAP). This year, the company has awarded nearly $2.5 million in funding to 18 recipients from 12 countries, including the U.S. BHAP, the largest program of its kind for the hemophilia community, was created to help improve the understanding and treatment of hemophilia and related bleeding disorders. The program also seeks to reduce the disease’s impact on individuals and their communities, and support the next generation of care and treatment options worldwide for people with hemophilia.

BHAP supports research in bleeding disorders, ranging from studies to better understand inhibitor development and methods for treatment, gene therapy and joint care to the development of pediatric care models in underserved markets and hemophilia counseling.

“We’re very pleased to award and congratulate these future hemophilia thought leaders for their exemplary passion, talent and expertise,” said John E. Murphy, Ph.D., Director, Molecular Biology, Biologics Research, Bayer HealthCare. “BHAP is a reflection of Bayer’s commitment to expanding the scientific and clinical knowledge that improves patient care.”

The 2011 BHAP recipients were selected by a global committee of distinguished hemophilia clinicians, researchers and caregivers, and were honored at the BHAP award ceremony held in conjunction with the International Society of Thrombosis and Haemostasis (ISTH) Annual Meeting in Kyoto, Japan. Among this year’s winners are:

  • Dr. John Sheehan of the University of Wisconsin, for “Contribution of the heparin binding exosite to factor IX clearance and in vivo activity”
  • Dr. Carol Miao, Seattle Children’s Research Institute, for “Immunimodulation to eradicate anti-factor VIII inhibitory antibodies”
  • Dr. Paris Margaritis, The Children’s Hospital of Philadelphia, for “The role of EPCR on FVIIa- mediated hemostasis”

Since its founding in 2002, BHAP has awarded nearly 200 grants, totaling more than $22.5 million, to researchers and caregivers from 29 countries. This support has resulted in more than 290 scientific abstracts, publications and presentations by awardees to date.

“BHAP, now in its ninth year, continues to attract high-quality applicants and awardees who are focused on advancing hemophilia treatment and patient care. Through such research, we hope to advance scientific understanding and positively affect the diagnosis and treatment of hemophilia and related bleeding disorders,” said Prof. Johannes Oldenburg, chairman of the BHAP Grants, Review and Awards Committee and Head of the Institute of Experimental Haematology and Transfusion Medicine at University Clinic Bonn.

In addition to the BHAP award ceremony at this year’s ISTH Congress, Bayer is also presenting data from globally sponsored studies and country-sponsored programs. Seventeen studies will be presented, including seven oral presentations.


HFA Elects New Officers

At its annual meeting, the Board of Directors of the Hemophilia Federation of America (HFA) named Mr. Paul Brayshaw as President of the national grassroots community-based organization. He was elected after serving the organization as vice president since 2008. More details (pdf).

FIRST-TIME ANNUAL MEETING ATTENDEES!
Educational Participant Grants Available for NHF's 62nd Annual Meeting – "Marching Forward"

The National Hemophilia Foundation is pleased to offer Educational Participant Grants for first-time attendees to its 62nd Annual Meeting, "Marching Forward" in New Orleans, Louisiana, November 11-13, 2010. The Annual Meeting enables our community to come together and exchange information on a wide variety of topics, from the basics of diagnosis to the most recent and relevant developments in treatment and technology.  It is the premier opportunity for networking and support for individuals and families affected by bleeding disorders.
Last year's Annual Meeting attracted more than 2,300 participants.  We anticipate that this number will continue to grow and that our gathering will become even more diverse, composed of all people with bleeding disorders. 

Eligibility
In our quest to foster a more inclusive annual meeting, NHF offers a limited number of Educational Participant Grants to individuals and/or families with bleeding disorders attending the Annual Meeting for the first time.  We would especially like to provide assistance to those unable to attend due to personal obstacles or other barriers.  Awards will be based on these factors, as well as on need. 

What the Educational Participant Grants Cover
Grants may be used to cover any of the following:

  • Airfare
  • Hotel
  • Registration Fees

Applicants may apply for grants in one or more of these categories, for a maximum of three nights and four days. 

How to Apply for Educational Participant Grants
Application forms for Educational Participant Grants may be downloaded here. 

Application Deadline
Letters must be postmarked by Friday, June 25, 2010.     

Where to Send the Application
National Hemophilia Foundation
116 West 32nd Street, 11th Floor
New York, NY  10001
ATTN:  Chapter Services Department --AM Educational Participant Grants

For More Information contact: sroger@hemophilia.org.



Hemophilia Council of California

Advocacy Update

March 15, 2010

From:     Yvette Bryant, HCC Board Chair
              Terri Cowger Hill, HCC Legislative Advocate
               Robyn Ireland, HCC Project Director

Subject:    Sacramento State Budget & Legislative Updates:

1. HCC Sponsored Bill SB 971/Pavley Is Set for Senate Health Committee on April 14th:
HCC is sponsoring SB 971/Pavley, the Standards of Service for clotting factor proposed legislation.  The bill will be heard in its first policy committee on April 14th. SB 971 will be heard in the Senate Health Committee on that day, and if it passes, will next be heard in the Senate Business and Professions Committee on April 19th.  Please see attached bill and Fact Sheet. Any letters of support can be addressed to:

Hon. Fran Pavley
Member of the Senate
State Capitol
Sacramento, CA  95814

Tell Senator Pavley you are in support of her SB 971 and describe why you support the measure.  Send copies to Robyn (hccassist@aol.com) at the HCC office so we can keep track of our supporters. Terri has been working hard to ensure passage of this bill from Senate Health Committee and is meeting w/ all members and staff.

2. State Budget - CA Is Facing Another Massive $20 Billion Shortfall in 2010:
CA is facing another gripping $20 Billion gap in 2010-11. This is after the State closed a $60 Billion gap last year!  The non partisan Legislative Analyst is predicting $20 Billion gaps for the next several years.

The Governor is proposing to close the gap with cuts, deferrals, and is attempting to secure $6 Billion plus from the Federal Government. We have been in Special Session since the beginning of the year and so far, the Legislature has only reached agreement on a very small portion of the $20 Billion gap.

While there are no specific cuts directed at CCS and GHPP at this time, the Governor's proposal to reduce eligibility for the State's Healthy Families Program has the potential of dropping approximately 5,000 CCS eligible children from that program!  We are opposing that item.

The Governor also has proposed a $2 Billion non specific cut the Medi-Cal Program which we are closely watching. The proposal also hints at limits to pharmacy benefits so Terri has already testified against that for our population.  We have previously sent out the proposed Budget Language on that item and other proposed Budget Trailer Bill Language, as well. Contact Robyn if you did not get a copy of that language.

Budget Subcommittees will begin soon and will unfold this spring and summer. We will also be closely watching the May Revise for any new cuts proposed by the Governor's office and for any positive news on the revenue picture.

3. Future Leaders and HCC Annual Legislative Day:
Mark your calendars for May 10th & 11th for Future Leaders Day and May 12th for our HCC Annual Legislative Day. Please contact Robyn Ireland in Sacramento for the details!  HCCassist@aol.com


 
Terri Cowger Hill, Owner
Cowger & Associates
Legislative Advocacy & Consulting to Improve
Health Care in California
1127 11th Street, Suite 426
Sacramento, CA 95814
Cell Phone: 916/952-3431, Voice Mail: 916/446-9103
Fax: 916/446-9109
terricowger@aol.com

Robyn Ireland
Project Director
Hemophilia Council of California
1507 21st Street, Suite 206
Sacramento, CA 95811
(916) 498-3780
hccassist@aol.com
mailto:terricowger@aol.com

SB 971 Fact Sheet (download doc)

SB 971 Senate Bill (pdf download)

New Baxter Program!

Baxter announces a new educational/scholarship program for all persons with hemophilia. The program is called EDUCATION ADVANTAGE and can be viewed at www.myeducationadvantage.com.

It will cover 4 areas; Educational Planning, Career Development, Health Management and Community Involvement. The program is geared toward 18-14 year old hemophilia A persons. There is no requirement to use a specific brand of product.

Hemophilia and Haiti

NCHS has been concerned about the situation in Haiti, and how it affected the hemophilia population there. We contacted the World Federation of Hemophilia, and this was their response:

"What we did so far is we asked Heidi, President of the Dominican Republic Hemophilia Association (other half of the island) if she knows anything about the need for hemophilia treatment products (Humanitarian Aid) in Haiti. She replied that although thousands of refugees are rushing into Dominican Republic, there were no people with bleeding disorders among them, so there was no need for any product donations yet. Please note that unfortunately WFH does not have contacts in Haiti (no record of people with hemophilia) and there is no registered Hemophilia Society.

"Talking to Project Share (Laurie Kelley) recently, they also confirmed that they have no current records of people with hemophilia in Haiti."

NCHS will keep you posted on any further developments.

Walk A Thon Site is Live!!

This year the Hemophilia Foundation of Northern California is pleased to be participating in NHF's Walk program.

Launched in 2008, the Hemophilia Walk is a nationwide event that raises funds and awareness about hemophilia and other bleeding and clotting disorders. Participants raise money, locally and nationally, for crucial research, advocacy and education by joining together in a fun and festive event.

On April 17, 2010 at Cesar Chavez Park in Berkeley CA walk teams will be participating in our First Annual Walk A Thon. Take a look at our walk information site for more information about how to pledge, join a team or create a team.

Now is the time to get your teams started and join us for what looks to be a fantastic and fun event! I've already started my team and raised some funds :-)

If you have any questions please don't hesitate to contact me, I am the Regional Walk Manager and eager to help in any way that I can.

Thank You!

Nancy Trunzo
Regional Walk Manager/Office Administrator
Hemophilia Foundation of Northern California
510-658-3324 office phone
nancy.trunzo@hemofoundation.org