Spring 2009 – Factor Nine News

TOPICS IN HEMOPHILIA

CHB Second Annual Fundraising Dinner
CHB Third Annual Symposium
Members Graduate
The Safety of Factor Products
Drohan Scholarship Winners Announced
Before Prophy: My Perspective
George Agnew Retires
Industry News
HFA in Indianapolis
Upcoming Events

2nd Annual Fundraising Dinner

The Coalition for Hemophilia B held its Second Annual Fundraising Dinner at the Millennium Broadway hotel in New York on Friday, March 20, 2009. Attendees included the lotto families we flew in for the symposium, industry representatives, and private donors. Monies raised will benefit our educational programs including the William N. Drohan Scholarship Fund.

Dinner began with a warm welcome to our guests by Dr. David Clark, Chairman of The Coalition for Hemophilia B, followed by John Taylor who announced the William N. Drohan Scholarship winners. Wayne Cook, President of the Coalition presented Dr. Christopher Walsh of Mt. Sinai Hospital the Eternal Spirit award for his many years of service and dedication to the hemophilia community.

Wonderfully talented entertainment followed the opening remarks as the A Capella Singers from ISMILE in NY Productions took the stage.

After a delicious dinner, we continued the enjoyable evening at our A Night at the Races! event where everyone had a fun time indeed!

The Coalition for Hemophilia B sends a sincere thank you to all of our generous contributors. We hope you will join us again next year at our Third Annual Fundraising Dinner!

Dr. David Clark, Chairman

Third Annual Symposium

The Coalition for Hemophilia B’s Third Annual Symposium was held on Saturday, March 21, 2009 at the Millennium Broadway Hotel in New York City. Wyeth Pharmaceuticals generously funded the educational symposium.
The Symposium began with a warm welcome and opening comment by Wayne Cook, President of the Coalition. Our first speaker was Dr. Christopher Walsh, head of the hemophilia treatment center program at Mt. Sinai Hospital in New York City. Dr. Walsh spoke about hemophilia updates for 2009. His speech was followed by a multitude of questions from symposium participants. Afterward, we enjoyed a lunch and visited the industry exhibit booths on display.
Second on the agenda was Dr. Jim Taylor of Greenbrae, California. He spoke about “Positive Pushing; How to Raise Successful Happy Children.” Dr. Taylor is a psychologist with over twenty years consulting experience with young people and their parents. Dr. Taylor is the author of ten books.

Our next speaker was Patrick Collins who gave us an update on legislative, politics, and advocacy. Mr. Collins is the Director of Public Affairs for CSL Behring. He has over fifteen years experience in public policy with eleven of those years specific to health policy. He has played a principle role in the congressional passage and funding of the $750 million Ricky Ray Hemophilia Relief Trust Fund. Mr. Collins was also a central figure in the creation of the Patient Notification System.
Later in the afternoon, the Coalition held its Factor Nine Family Session and played the game “Are You Smarter than Your Hemophilia?” Dr. David Clark then presented current Hemophilia B research information. Following Dr. Clark, two breakout sessions were held, one on inhibitors led by Joyce Hewitt of UnInhibited, and the second, a Peer-to-Peer Session led by Jill Lathrop and Becky VanSant.

Symposium Attendee Comments

“Thank you very much for sponsoring our family to attend the Annual Symposium. I can’t convey how much we learned and gained from the information that we received. The speakers, the program, and children’s activity were wonderful. You gave us the opportunity to network with other families and you gave the boys the opportunity to make friends with other boys that they can relate to. Thank you for giving the boys a taste of New York from their first airplane ride to eating a hotdog from a street vendor. The Coalition went above and beyond for us. Thanks for giving the boys lasting friends, memories, and education.” H. H., Montana

“I was very impressed by the quality of speakers and information available at the symposium. My husband and I had the opportunity to finally meet and have time to network and visit with other families with children of all ages that have hemophilia B. We all have a common thread; yet walked with very different stories and life experiences. It was uplifting to finally have clinical information available to us that was specific only to hemophilia B. The update on advocacy and the latest research information for hemophilia B patients is something that all attendees seemed to soak up. The Coalition for Hemophilia B’s Annual Symposium was valuable in education and networking! D. C., Pennsylvania

“Since we have no family history of hemophilia B it has been a shock and important for us to meet others with this disorder. The symposium was so well run and organized. The kindness that was shown to our family was overwhelming! The kids had a blast and enjoyed meeting the other kids. Our nine year-old daughter was glad to see the boys playing and doing normal things! Shannon and Kasie did a great job baby-sitting. We felt like we were part of an extended family and were sad to say goodbye. We are very grateful to all of the speakers. We found it very informative. I especially liked listening to the child psychologist. We will keep in touch and look forward to the next event. PS – Our son had to make a donation for a community service project and he chose hemophilia B. I will forward his essay; it’s beautiful if I do say so myself!”
K. L., Maine

“Thank you very much for a wonderful weekend! This is the first time our son sat in on the sessions with us. As an adult, he learned so much.” K. B., Michigan

“Being our first conference, it was terrific hospitality and we felt more than welcome; much like a new member of the family. It was really nice to connect with parents. We have great outlets in NY, but for us to find an organization that deals directly with B, which speak for our own personal needs and advocates for the community, made the entire day very special. The Family Room looked like a lot of fun and we look forward to the day when our two boys are old enough to participate. The Advocacy portion shed a lot of detailed light on existing topics. Through the presentation, everything began to make sense from what we have been reading or researching. The game at the end was fun. Dr. Clark’s discussion was insightful. Many medical terms were broken down to simple English and the information was easy to digest.” B. S., New York

“Our family had a wonderful time in New York. The symposium was great, not to mention informative. I have been to a few hemophilia events, but none were as interesting as this one. My husband and I both said that the speakers were wonderful. We both were very interested in the upcoming medical breakthroughs that are being worked on. It is great to hear of medical advances in the research and with hope, this will be a disorder that will one day have a cure. This symposium is definitely worth saving for. We can’t wait until next year. All of the children had a wonderful time. You really hit the nail on the head with the kid’s room. Even our teens had a great time, they normally say the kids events are boring and no fun but both had tons of positive things to say about the weekend. Our youngest son can’t stop talking about the Magic show…great choice! Keep up the great work!” J. K., Ohio

“We LOVED it! We had so much fun and learned a lot because it was pertinent to us. We also made some great new friends. Even my son made friends. One of the older boys sent my son a picture of himself infusing. It is helping him get more involved in his own treatment and care. He actually told someone that he had hemophilia for the first time ever. So, as usual, you all have made a huge difference in our lives. I have no idea what we would do without you!” L. L., New Mexico

“Thank you for a wonderful time in New York. It is such a treat to visit our hemophilia family – Kim is known in our home as the pseudo Hemophilia B aunt and Wayne is just Wayne. The boys view him as a mentor and guiding force in their lives. They take to heart what “Uncle” Wayne says far more than what we say to them. We especially enjoyed being able to have that small group of kids to chat with and bond with. It’s amazing how far things have come since I first contact Kim in a letter way back in 1998. The Coalition continues to be on the front edge of what is happening in the hemophilia community and we are terribly grateful for the many ways we have benefitted.” J. L., Illinois

“Our visit to the Symposium in New York was life-changing in many ways. We were treated like royalty from the moment we arrived. It was wonderful to meet other parents and make friends. The symposium was very informative all the speakers were wonderful. Thank you for giving us this experience.” C. A., Texas

“Thanks for organizing a wonderful day! Thanks to the volunteers too. Dr. Walsh’s talk was very informational and the parenting lecture definitely useful. We don’t fully realize how much tension builds up between us over parenting issues – his talk was a stress buster for me. I think we could use more talks on parenting issues – especially the unspoken emotions that come up over hemophilia. We look forward to next year!” H. H., New York
A big thank you to our sponsors, exhibitors, and speakers for making our Annual Symposium a huge success!

Congratulations to our CHB Member Students!

Josh Williams, son of Pam Williams, graduated from Southern State Community College in Hillsboro, Ohio with an RN degree. He is currently working in the emergency room at Clermont Mercy Hospital in Batavia, Ohio

Jarrad Schimmels, son of Neal And Celeste Schimmels, graduated from Franklin County High School in Frankfort, Kentucky. Jarrad will be attending Bluegrass Community and Technical College in the fall.

Anthony Vetter, son of Maria and the late Bruce Vetter, graduated from The High School of St. Thomas More in Champaign, Illinois. In the fall, Tony will be attending University of Illinois at Springfield to pursue a degree in Business Administration.

The Safety of Factor Products
By Dr. David Clark

The safety of factor products, including factor IX concentrates and products for inhibitor treatment, is a major concern of the hemophilia community. The main issue is transmission of infectious diseases. All products are safe in terms of not transmitting bacteria, fungi and molds, which allows them to be labeled “Sterile.” However, up until the mid-1980s, all products were derived from human plasma, and none were specifically treated to remove the risk of transmitting viral diseases. Many hemophilia B patients were infected with hepatitis B and hepatitis C (then called non-A, non-B hepatitis), as well as other viral diseases. Until the appearance of AIDS, viral diseases were considered to be an inevitable side effect of hemophilia treatment. Once the AIDS crisis hit, everyone realized that this was no longer an acceptable situation.

Plasma donors were always screened for hepatitis B, but the older tests were not sensitive enough to keep all of the infectivity out of the plasma pools. Plasma-derived products are typically made starting with pools of around 3000 liters of plasma (about 800 gallons). Intermediate fractions from several plasma pools are also often combined later in the manufacturing process so that any batch of product may contain components from as many as 60,000 donors. It only takes one infectious donation to slip through the system to potentially contaminate the whole batch. However, since the early 1980s tremendous strides have been made in donor selection and screening to minimize the risk of contaminating the starting plasma pool.

Donors are now screened using questionnaires that look for lifestyle characteristics such as intravenous drug use and risky sexual behavior. They also receive medical examinations to look for any signs of infectious diseases or risky behavior. Collection organizations also keep databases of deferred donors, which are shared nationally, to prevent previously rejected donors from trying to donate again.

Testing of donated plasma has also improved greatly. Plasma is currently tested for hepatitis B and C, and HIV-1 and HIV-2, which are AIDS viruses. Since the viruses themselves are difficult to detect, most of the original screening tests looked for antibodies to the viruses of concern. Antibody tests are called “serology” tests. However, there is usually a lag time between when a person first becomes infected with a virus and when he starts producing antibodies against the virus. If someone donates during that period, called a “window period,” his plasma could contain a large number of virus particles but not enough antibodies to detect and cause the plasma to be rejected. Starting in the mid-1990s, nucleic acid testing (NAT) was implemented, which tests for the viruses themselves by detecting the viral DNA or RNA. NAT significantly reduced the window period. Today the viruses of concern are screened out using both serological and NAT tests. In addition, the plasma pools are also tested by NAT.

The use of both types of tests, serological and NAT is one aspect of the general strategy of overlapping layers of protection. The strategy is that there is enough redundancy in the system that if one safeguard fails for whatever reason, there are enough other safeguards still in place to catch anything dangerous. This is on top of the system of Good Manufacturing Practices (GMPs) that the FDA uses to ensure the safety of all pharmaceutical products.

The plasma product manufacturers, through the Plasma Protein Therapeutics Association (PPTA), also have their own programs to further ensure the safety of their products. These include policies such as an inventory hold. All donations are held for at least 60 days within which time the donor will usually have donated and been tested again. If the second donation tests positive for any virus, the first donation can also be rejected since it might have been donated during the window period. There are a number of other steps in the PPTA programs that contribute further to making plasma safer.

In spite of all the screening and testing, there is still a small chance that viruses can slip through into the plasma pools. No test is perfect. Therefore, all of the production processes contain multiple viral inactivation and removal steps. For instance, in the production of Mononine®, the monoclonal antibody column used to remove other proteins from factor IX has also been shown to remove significant amounts of contaminating viruses, and the chemical that is used to release the factor IX from the column has been shown to inactivate viruses. The process also includes two steps that filter viruses out of the product. Similarly, the AlphaNine® SD production process uses two consecutive chromatography steps that remove viruses along with extraneous proteins from the factor IX, plus a filtration step that removes viruses and a solvent-detergent step that inactivates viruses.
For plasma-derived products, the package insert, the direction sheet that comes with each bottle of product, always lists the viral inactivation and removal steps and the amount of virus that can be removed. The amounts of virus are expressed in logs, which are powers of ten. One log of virus is 10 virus particles, two logs is 100 (102 or 10 x 10), three logs is 1000 (103 or 10 x 10 x 10). For instance, the package insert for AlphaNine® SD shows that the solvent-detergent step can inactivate at least 12.2 logs of HIV-1. (Mononine® has a similarly high clearance for HIV-1) Twelve logs is 1,000,000,000,000 or one trillion virus particles. The amount of virus that could slip through the screening and testing processes is much smaller than that. For HIV-1, the possible contamination is more like about 2 logs or 100 virus particles. Therefore, the manufacturing processes provide a huge safety factor.
The graph above shows pictorially how this all fits together. Starting at the upper left, the risk of including potentially infectious viruses when collecting plasma from the general population is relatively high. Then as you move along the line through Donor Selection, Donation Screening, NAT testing and Inventory hold, the risk drops. The Pathogen (virus) inactivation and removal steps in the manufacturing processes provide the largest drop. Cleaning/sanitization and Batch-to-Batch segregation refers to cleaning of the manufacturing facility and process equipment between batches of product. That prevents any virus that might have been in one plasma pool from possibly contaminating another pool. Finally, pharmacovigilance is the required tracking and reporting of adverse events, including infections. When you get to the end of the line, the risk is very low. However, it is never zero. There is always some risk with any product.
Recombinant products are usually considered safe from viral contamination, but viruses can infect the cells used to produce the products. Therefore, when a manufacturer develops a cell line to produce a product, it is tested extensively to make sure it is free of viral contamination. The liquid in which the cells are grown, which is called the medium or media, is also a potential source of viral contaminants, especially if it includes components of human or animal origin, which could contain viruses. The media are screened and processed to minimize viral contamination, but many manufacturers are moving to media that are free of human or animal components. BeneFIX® is made with a process that is completely free of animal- or human-derived components, and the process includes a virus filtration step, as an added safeguard. The NovoSeven® process includes animal-derived components but no human-derived components. The NovoSeven® process has also been shown to remove potential contaminating viruses.

One other possible risk for plasma-derived products is transmission of variant Creutzfeldt-Jakob disease (vCJD). This is the human disease that has developed from eating beef from cattle with BSE or mad cow disease. It is transmitted by prions, which are much smaller than viruses. There are currently no simple tests for prions that could be used to screen plasma, but donors are screened for risk factors such as having spent time in Britain at the time mad cow disease was prevalent. Any potential donor with an active case of vCJD would be screened out by the medical exam, but it is not known whether or how long people are infectious before they show symptoms. Prions are difficult to inactivate, but most of the viral removal steps in the manufacturing processes also remove prions. There have been no cases of prion transmission by factor IX products, and the risk is apparently extremely low. However, manufacturers continue to work on this problem.

Whether they are plasma-derived or recombinant, today’s factor products are extremely safe, and the manufacturers are continually working to make them even safer. The risk is never zero, but it is tiny. There have been no cases of transmission of hepatitis, AIDS, or other serious disease by factor products in the U.S. since the late 1980s. Hemophilia B patients can confidently use whatever product works best for them.

Dr. William Drohan Scholarship Winners

We are delighted to share with you the winners of the William N. Drohan Scholarship Award.
Congratulations to the 2009 award recipients!

Kathryn Marlette from Bountiful, Utah has been awarded a $10,000 scholarship. This fall, she will begin her college education at Brigham Young University in Provo, Utah.

“As a young Hispanic woman just starting as a college freshman, I have excelled in the areas of advanced chemistry, math, and biology. I am investigating a pursuit towards a doctorate degree in pharmacy. My interest was sparked when I learned of the recent advances in pharmacogenetics. I would like to study how medications and blood products are utilized or rejected by the body based on an individual’s genes.

I see challenges not as burdens, but as inspiriting obstacles. Although these challenges often require hours of grueling work, there is the overwhelming feeling of success of having understood and achieved a goal – whether it be a school project, a long run, or a piano performance. With knowledge comes the responsibility to share it with others. I enjoy working in groups and tutoring others who are struggling so that they too, can feel this sense of accomplishment. I have learned that life’s endeavors will require from me many of the attributes demonstrated by Dr. William Drohan – drive, innovation, scholarship and compassion.

I strongly believe in having a well-rounded life. That means keeping myself healthy and strong not only mentally, but also emotionally, physically and spiritually. My passion is returning service back to others and the community around me. Having watched my mother, who is a nurse practitioner, work with children and adults who have bleeding disorders has given me a better understanding for those with physical and chronic challenges. She has inspired me with her dedication and drive.”

Matthew Burnett of Louisville, Kentucky received an award of $5,000. Matthew will be attending St. Louis University in St. Louis, Missouri this fall.

“Stating my goals and aspirations in life can be compared to trying to predict the weather several months ahead of time – you can obtain a mildly accurate forecast but this prediction can change from day to day. It is important to understand that relative to the rest of the United States, I am still a child; ergo my goals in life are continually changing. However, over the past few years, there seem to be an emerging constant; I would like to have a substantial impact on my country through some form of service, i.e. political office or military services.

As my presumably increasing level of maturity correlates to a wider scope of world events and cultures, I have come to realize how blessed I am. I live in a nation that is safe and free with a government that is relatively non-intrusive in the lives of its people. I do not live with the constant fear of being attacked or invaded. I don’t have to worry about missing a meal or not being able to find water. I am allowed to be myself. All of the aforementioned privileges are the result of years of self-sacrifice by our solders, and the leadership and resolve of our government officials. So many have given so much so that we may live without the fear and the anguish that so many others experience on a daily basis. In general, most people take these blessings for granted, but not me. I will dedicate every ounce of my being to help better this country, so that the work of our predecessors will not have been in vain. I have been given so much and I intend to start giving back. Whether it is being the head of government or fighting on the front lines. I will have a positive impact.

Music is a passion of mine. It is the true universal language. It can transcend class distinctions, difference races, boundaries, religions, political beliefs, etc. Music doesn’t care about these things – When one composes a song, they compose what they feel. These compositions are the individuals themselves, put to music. I have composed several pieces myself. These are not “good,” per se, but they are my own; they are me. Music has the power to relax, inspire, entertain, and comfort.”

Before Prophy: My Perspective
By Paul Brayshaw

I have severe hemophilia B and in 35 years, it has never been easy to stick myself with a needle to infuse my replacement clotting factor. While there are times when I must infuse, a majority of the time I choose to infuse because it is better than the alternative – pain, suffering, debilitation, and the lack of control of my condition.

Shortly after the moment I was born, and when my parents received a hemophilia diagnosis, I concluded infusions were miserable. As an infant, my mother used to inject factor into a scalp vein on my forehead. Fortunately, I do not recall much more than lying on the kitchen table. However, my mother reminds me that I would cry upon sight of the needle, which would produce a large vein and allow for a quick stick.

Throughout childhood, the antecubital veins were the preferred mode of access for on-demand treatment, and secondary prophylaxis prior to downhill skiing, hiking, and/or biking. In the last several years, I began to experiment with other techniques, such as alternative infusion sites and regular prophylaxis to deter those micro-bleeds that feel strangely arthritic.
In all of my hemophilia experiences and treatment strategies, I have never felt an infusion was worse than the pain associated with a bleeding episode. It is possible my sentiments are a result of knowing what it feels likes to be in serious, debilitating pain. However, it could also be that primary prophylaxis was not well recognized as a preferred treatment protocol. In either case, my childhood experiences helped me avoid the frustration associated with multiple prophylaxis infusions every week, and thus allowed me to avoid a needle stick as the most frequent pain associated with the treatment of hemophilia.

As a person with hemophilia, I must confront many difficult choices to effectively manage my condition. With the helpful advice of doctors, caregivers, and family members, I must decide how I want to live my life. I have determined being in less pain is a top priority. So with my limited options, a needle stick to prevent a bleed is always more attractive to me than the combination of a needle stick and an active, and/or uncontrolled bleed.

George Agnew Retires

George Agnew served as the Director of New York Blood Center’s Hemophilia Services. Nineteen years ago, he began at the New York Blood Center as a manager in the Hemophilia Department. As Director of the Hemophilia Services Department, George was responsible for coordinating the contract pharmacy operation for the 340B Factor programs of the following hemophilia treatment centers: Long Island Jewish HTC, New York Presbyterian HTC, Mount Sinai HTC, and Albany Medical Center HTC.

Recently on March 17, 2009, George was honored at the Blood Services Region II meeting for his dedicated work with the hemophilia treatment centers and Hemophilia Services Consortium.

George plans to spend the first part of his retirement restoring a 121 year-old Victorian in Greenport, Long Island while taking time to enjoy his family and do a little fishing.

George, sincere congratulations on your well deserved retirement! We wish you many healthy, happy years ahead!

Industry News

The Hemophilia Alliance

We are pleased to announce the creation of the Hemophilia Alliance Foundation run by an independent committee made up of the following members of the Hemophilia Community:
1) Joyce Strazzabosco, Chair, Past President and CEO of the Mary M. Gooley Hemophilia Center; Rochester, New York
2) Geoffrey Allen, MD, Medical Director, Hemophilia Treatment Center, Children’s Memorial Hospital; Chicago, Illinois
3) Michelle Rice, Regional Director for Chapter Services, National Hemophilia Foundation
4) Mary Anne Schall, Regional Coordinator, Great Lakes Hemophilia Foundation
5) Chad Stevens, Chair, Hemophilia Federation of America
6) Marisela Trujillo, Administrative Director, Gulf States Hemophilia Treatment Center; Houston, Texas

These six individuals are developing guidelines for investing not less than $500,000 into the hemophilia community for 2009/2010. The goal of the Foundation is to foster improvements in organizational effectiveness for hemophilia treatment centers and national hemophilia patient advocacy organizations and/or programs that would benefit multiple chapters, foundations or serve the greater good of the hemophilia community. For more information, please visit:
www.hemoalliance.org

Grifols

ISTH 2009 Boston, Grifols Special Symposia, Monday July 13, 2009, 6:30 – 8:00 PM, Room 160 ABC Topic: Managing Hemophilia B: How Can We Optimize Treatment from a Laboratory and Clinical Perspective? Chairman: L. M. Aledort (New York, USA)

CSL Biotherapies

U.S. Department of Health and Human Services (HHS) to provide Novel A (HINI) influenza vaccine antigen in bulk form to support HHS pandemic influenza preparedness efforts. The initial order under contract will be for an amount of at least $180 million. CSL Biotherapies anticipates initial delivery of the antigen by September, subject to regulatory approval. The new vaccine antigen will be tested in clinical trials funded by HHS. “We are pleased to be partnering with HHS to provide our full support and global expertise in addressing the serious threat to public health that the Novel A (HINI) virus represents,” said Paul R. Perreault, President of CSL Biotherapies.

PSI (Patient Services Incorporated)

PSI, a leading patient assistance non-profit became the sole member of Positudes, Inc. a non-profit Pharmacy for Compassionate Prescriptions Drug Distribution located in Merrick, New York, in a membership agreement reached on April 1, 2009.

The new mission of the pharmacy under PSI will solely be to dispense compassionate prescription drugs for Pharmaceutical Assistance Programs. No products will be sold in conformance to the mission of this venture. The new non-profit venture will become known as “PSI-PI Pharmacy” operating under the auspices of PSI and perpetuating the legacy of Lawrence Madeiros, co-founder of Positudes, Inc.

This new service will offer an opportunity for the pharmaceutical industry to utilize a legally compliant, non-bias non-profit administrator and non-profit pharmacy to dispense compassionate prescriptions for rare expensive chronic and catastrophic illnesses. This model has been patented by PSI and provides the industry opportunities for expanding needed services while saving costs without affecting “best price.”

“We have now achieved our goal of providing a total spectrum of assistance for chronically ill patients who are emerging from clinical trails and those who are struggling to afford the high cost of their medications,” said PSI President and Founder Dana Kuhn. For more information contact Mandy Herbert or John McNamara by phone at (804) 733-3813 or by email: uneedpsi@uneedpsi.org

Wyeth

On April 17, 2009, in honor of the twentieth anniversary of World Hemophilia Day, Wyeth Pharmaceuticals, together with the World Federation of Hemophilia (WFH) announced the addition of five new partnerships to the WFH Twinning Program. Begun in 1994, the Twinning Program aims to increase the levels of diagnosis and care for people with hemophilia by pairing emerging treatment centers and patient organizations with more established centers and organizations around the world.

“Wyeth recognizes that effective collaboration between advocacy organizations and industry can help people with chronic illnesses such as hemophilia,” says Angela Rossetti, Assistant Vice President, and Global Business Manager for Wyeth Hemophilia. “Our continued support of the Twinning Program – now in its 16th year – and other advocacy initiatives is part of a global collaborative effort designed to help patients with hemophilia and their families receive access to better care.”

The new Twinning partnership includes the following hemophilia treatment centers:
Addis Ababa (Ethiopia) and Chapel Hill (North Carolina, USA)
Dakar (Senegal) and Paris (France)
Quito (Ecuador) and Caracas (Venezuela)
Manipal (India) and Albuquerque (New Mexico, USA)
Skopje (Macedonia) and Bonn (Germany)
For more information on the Twinning program and to view a video of the Lima (Peru) and Forth Worth (Texas, USA) Twin in action, please visit: www.wfh.org

In Our Thoughts and Prayers. . .

We would like to inform our members that Maureen Cook, wife of the Coalition’s president, Wayne Cook, has been diagnosed with cancer. Wayne has created a page called Maureenslife on carepages.com to keep all updated. If you would like to send cards or letters please mail to:
Maureen Cook, 8 Aspen Road; Latham, New York 12110
Maureen, Wayne, and their three children, Wayne Jr. (married to Morgan), Shannon and Kasie would like to thank all of you for your loving messages, kind words and beautiful flowers. We will keep you posted as to Maureen’s recovery

The Coalition for Hemophilia B at HFA in Indianapolis

The Coalition for Hemophilia B’s Factor Nine Family Meeting was held in conjunction with the Hemophilia Federation of America Symposium in Indianapolis, Indiana on March 14, 2009.

Thank you to all Coalition B members that attended our meeting!

The Coalition for Hemophilia B in Indianapolis -
Members pose for a group shot.

Wayne Cook, Muscle Man Chad Stevens and Carl Weixler roughing it up at the Hemophilia Federation of America’s 15th Birthday Celebration. A great time was had by all!

Upcoming Events!

Sunday – July 12, 2009
National Hemophilia Foundation Walk 2009!
New York, New York

Registration for NHF Walk 2009 begins at 9 a.m., the Walk begins at 10:00 a.m. Start and finish at Riverside Park and W. 83rd St., right in front of River Run Playground. There is a 1 mile and a 5K route, both are wheelchair accessible. It is fun, short and simple. All children get a tie-dye T-shirt and a participation medal when they cross the finish line. There will be rainbow bagels, entertainment, goodie bags and more! Walk with us – bring your dogs, strollers, grandparents, coworkers, and friends. It is a warm, meaningful, community-filled Walk. Please join us!
To register and/or to donate online, please visit: www.hemophilia.org

Saturday – August 8, 2009
Hemophilia and Bleeding Disorders of Alabama 1st Annual Meeting
Birmingham, Alabama

Please visit The Coalition for Hemophilia B exhibit booth at HBDA’s 1st Annual Meeting!

McWane Science Center (205-714-8300); 200 19th St. N., Birmingham, Alabama 35203
For more information or to register, please contact Vicki Jackson at 334-277-9446
vickijackson.hbda@gmail.com
Registration deadline: July 3, 2009
We look forward to seeing you!

Saturday – August 15, 2009
Adirondack Spintacular - Sacandaga Lake in Mayfield, New York

The 8th Annual Adirondack Spintacular, a 5K, six or twelve mile cycle/walk/run event is co-sponsored by Positudes, Inc. and The Center for Donation and Organ Transplant. Our purpose is to raise Hemophilia and Organ Donation awareness, and to raise scholarship funds in memory of Positude’s co-founder, Lawrence Madeiros. The Lawrence Madeiros scholarship will be awarded to graduating seniors living with a chronic disorder that are continuing their education at an accredited college or university. The course is a scenic 5K, 6 mile route amidst the Adirondack Mountains and along the Great Sacandaga Lake in Mayfield, New York. Last year, over 450 people participated! Event Day check-in begins at 8:30 a.m. to 9:30 a.m. Spintacular race begins at 10:00 a.m. followed by a barbecue lunch at noon. We hope that by contributing in some way by running, walking, biking, volunteering, and /or donating, you too will enjoy yourself and directly help someone fulfill their dreams.

For more information, contact: Carol Madeiros: 518-863-8998 carol@adirondackspintacular.com

Reminder

The Factor Nine Group moderated by Jill Lathrop is located on Yahoo.com
Search “Factor 9” on Yahoo Groups

We wish all of you a wonderful Summer!

For back issues of Factor Nine Newsletter or for more information on research, please call or write to:
Kim Phelan; 825 Third Avenue, Suite 226; New York, New York 10022; Telephone (212) 520-8272
Telefax (212)520-8501; E-mail: hemob@ix.netcom.com Website: www.coalitionforhemophiliab.org

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Published:: 07.21.09 / 6pm

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