Summer 2007 – Factor Nine News

TOPICS IN HEMOPHILIA

-CHB New York Symposium
-Dr. William N. Drohan
-FundFusion, Arizona
-Spintacular Walkathon, NY (upcoming! 8/25)
-HFA Conference, New Mexico – Industry News
-Factor Nine Family Meeting, Indianapolis,
Indiana (upcoming! 8/25)

---

The Coalition for Hemophilia B

(New York Symposium)

Wayne Cook, John R. Taylor and David Clark

On Saturday, March 31st, The Coalition for Hemophilia B held a Symposium at the Millennium Broadway Hotel in New York City. The day was filled with educational speakers and special awards. We began at 9:30 am with opening remarks from Dr. David Clark, Chairman of The Coalition for Hemophilia B. Dave welcomed everyone and presented the William N. Drohan PhD scholarship plaque to the Drohan family. Sadly, Bill passed away several days earlier. Bill’s son Craig accepted the plaque on behalf of his family.

Mario “the Magician” and Tyler Blair

Wayne Cook presented an award to John Taylor for his many years of dedication and service to the hemophilia B community. John & Joyce Taylor founded the Coalition in the early 1990’s. Bill Drohan was one of the Coalition’s first boardmembers. Their dedication and perseverance has made the Coalition what it is today and given so many people with hemophilia B a better quality of life through research, education and support.

John Taylor spoke of the many trials and tribulations the Coalition has endured and of the future. He talked about his relationship with his dear friend Bill Drohan and how he will miss him.
When John finished we had a moment of silence and played Bill’s favorite song “Sunrise, Sunset”.

Our first educational speaker was Dr. Zale Bernstein from the State University of New York at Buffalo School of Medicine. Dr. Bernstein had the audience gripped with his knowledge and wit.
He spoke about all aspects of treating hemophilia
from prophylaxis to how to become a good
advocate in the Emergency Room.

Families gathered to board the Circle Line boat tour to see the Statue of Liberty

Our next speaker was Michael O’Connor, a 16 year old with hemophilia B from Cold Springs Harbor High School in Long Island. Michael is on the varsity swimming team. He talked about youth athletics, how to stay in shape and how he infuses
in order to be a competitive swimmer. Michael fielded many questions from parents of children with hemophilia. We ended the morning session with Dana Kuhn from PSI (Patient Services Inc.), a non-profit organization that helps individuals with bleeding disorders, with insurance issues. Dana spoke about the many issues that are plaguing the hemophilia community, from sole source providers to lifetime caps and what to do when you reach your limit.

After lunch, the afternoon program was held by Joe Caronna, founder of Inalex Communications, a non-profit organization dedicated to serving the needs of those with a bleeding disorder. The speaker for the session was Ron Potter-Efron PhD from Wisconsin. Dr. Potter-Efron spoke of issues ranging from finding a space for anger to advice for parents who worry too much. He motivated people to look at what lessons we can learn by
developing a positive attitude.

Wayne Cook closed the Symposium by thanking everyone for coming. We went overtime as usual and afterward many people continued talking in the hotel lobby. The children had a good time in our babysitting room filled with games, crafts and videos. Mario “the Magician” did a wonderful job entertaining them. Our goal is to have another symposium next March. We will keep you informed of the future date. We thank all our volunteers, speakers and sponsors of this event and hope to see many of our members attend the next one!

---

Dr. William N. Drohan

Bill and youngest daughter, Laura at Redskins Game

I am sure many of you in the hemophilia community have had the pleasure of meeting Bill Drohan over the years. If you did, you would not forget him, he was one of the nicest people I have ever known. On March 25th, Bill lost his battle with metastic lung cancer. He was 60 years old.

Bill was a well-known microbiologist and educator who will be remembered for his many contributions to science. He was a pioneer in using molecular biology to produce recombinant proteins and a visionary scientist who dedicated his life to improving the safety of blood and blood products. Other important contributions include investigating mad cow disease in the blood supply, and his development of novel ways to treat traumatic injuries including bandages to stem hemorrhage. Bill had a great sense of humor and carried that into his work. I remember seeing a scientific slide show presentation on transgenic proteins and Bill was in the slideshow dressed in a pig costume!

Bill was equally dedicated to scientific research and to mentoring students and young scientists.
His career included important positions with the National Cancer Institute, The American Red Cross, and private companies dedicated to treating bloodborne disorders, most recently as Chief Scientific Officer of STB, Ltd., as well as Chief Scientific Officer at Inspiration Biopharmaceuticals, Inc. and previously Chief Scientific Officer of Clearant Inc. He was also a very involved Board Member of The Coalition for Hemophilia B, his passion; drive and vision were instrumental in the formation of the Coalition when it first began in the early 1990’s. Bill served as Professor in the Graduate Program of the Department of Genetics of George Washington University and formerly as Adjunct Professor in the Department of Chemical and Biochemical Engineering of the University of Maryland. Dr. Drohan published more than 145 scientific papers and holds 30 U.S. patents. He served on the editorial boards of several scientific journals, and was a member of the Scientific Steering Committee for Blood Products at the Walter Reed Army Institute of Research and the Chairman for the Panel on Biotechnology of the National Research Council.

Bill’s professional and personal enthusiasm was always a great motivation for many fortunate to have worked with him. He will be remembered by many younger scientists for his generous mentoring role. In addition to his passion for science and business, Bill was an avid sports fan whose next-day summaries of the Virginia Tech Hokies’ games or Washington Redskins football games were eagerly anticipated by all. Bill asked that his friends, family and professional colleagues celebrate the life that was whenever they think of his passing, rather than grieve his loss. He leaves to all of us a legacy of scientific achievement and inspirational leadership that was accompanied by
an extraordinary level of kindness and generosity.

John Taylor, Kim Phelan and Bill Drohan, exhibiting at annual NHF Conference in 1996

On March 31st, Bill’s wife Marian, and their 5 children, Colleen, Maureen, Kathleen, Laura and Craig attended the Coalition for Hemophilia B Symposium in New York where we presented the family with a plaque that establishes a scholarship fund in Bill’s name. The scholarship fund is for children of scientists, working in the hemophilia area, who have a need for funds, especially those who have lost their father or mother. Anyone who wishes to make a contribution can send a check payable to: The Dr. William N. Drohan Scholarship Fund and mail to: The Coalition for Hemophilia B, 825 Third Avenue, Suite 226, New York, NY 10022, Attn: Kim Phelan

When somebody dies, a cloud turns into an angel
and flies up to tell God to put another flower
on a pillow. A bird givse the message back to
the world and sings a silent prayer that makes
the rain cry…

People disappear, but they never really go away.
The spirits up there put the sun to bed, wake up
the grass, and spin the earth in dizzy circles.
Sometimes you can see them dancing in a cloud
during the daytime when they’re supposed to be
sleeping.

They paint the rainbows and also the sunsets
and make waves splash and tug at the tide.
They toss shooting stars and listen to wishes.
And when they sing windsongs, they whisper to
us, “Don’t miss me too much. The view is nice,
and I’m doing just fine.”

---

FUNDFUSION

Tempe, Arizona, February 18-20, 2007

We received a generous invitation from the Hemophilia Association of Arizona to attend a FUNDFUSION event at the Mission Palms Hotel. Some 100 people gathered from over 35 chapters and various organizations within the hemophilia community. The purpose of the conference was to educate chapters and organizations on fundraising strategies from academic and fundraising professionals, to network and promote ongoing
dialog among chapters and organizations.

The keynote speaker was an extraordinary woman named Carol Weissman, President of Boardbuilders.com. Carol also served on the board of NHF in the 1970’s and has served on over 29 boards since then. She can captivate an audience with her wit and humor. Carol makes learning fun. David Sternberg, another speaker from the Center of Philanthropy at Indiana University made us feel as if all we thought we knew was wrong, so we basically had to empty our teacup to allow new ideas to flow in. He forced us to look at new ways of seeing our missions and to revive our statement purpose. The Ethics session by Bill Harrison of Southwest Fundraising Institute, had us each form groups where we had to take a real life case scenario and come to a conclusion as to how we would handle it. Each group was faced with a certain dilemma. This was a wonderful energetic time for everyone and we all worked together with excitement. We were given a certain amount of time and then one person from each group would speak on the outcome that was decided. Later Bill discussed how it turned out in real life.

“This was a wonderful energetic time for everyone and we all worked together with excitement.”

The conference was filled with a wealth of invaluable information needed for the success of any organization. We saw what organizations are doing on an international basis. We learned about bequests, that is when an individual leaves the organization of their choice in their will so when they pass on, the organization receives monies. The discussion of members and donors came up and Carol made the comment that if you are a board member, you should contribute to the organization which you belong. She told us a story about a time when she was married with a young child and they were on a budget. She wanted to make a donation to her organization so she and her husband spent one month eating in, not going to the movies, no babysitter and at the end of the month they were able to make a donation of $250.00. That is what she would call a sacrificial donation.

Many other topics were covered by a number of speakers ranging from internet fundraising, specials events, annual campaigns using direct mail and telemarketing, making a case for support and so much more.

We learned much and I am sure we will all delve into the booklets we were given quite often.
Special thanks to Cindy Komar of the Hemophilia Association of Arizona and her team. I am sure we all look forward to making wonderful strides!

---

Adirondack Spintacular

Saturday, August 25th, 2007

The 6th annual “Adirondack Spintacular will be held at 10:00 am in Mayfield, New York. Rain or shine you can run, cycle or walk for hemophilia and to raise organ donor awareness.

The Spintacular is a community based volunteer driven 5K, 1, 6 or 12 mile cycle, run or walk that is family oriented, promotes physical fitness, recreation and a healthy way to spend time.
After the ride there is a BBQ, Silent Auction, Children’s activities and Bounce House. Awards are presented to the top overall finishers in Running, Cycling and Walking (not the 1 mile) events and, to the top 2 male and female winners in each event by age divisions.

Historically, over 400 people, ranging in age from 1-88 years young have participated in the Spintacular. Many people from the surrounding areas attend as well as persons from outside the New York state.

Proceeds from this event benefit the Lawrence Madeiros Scholarship founded in 2001, in memory of Larry Madeiros, who had severe hemophilia B, HIV and Hepatitis C. In 2001, at the age of 38, Larry passed away awaiting a liver transplant.
He was a passionate, positive, caring, loving husband, father and friend. He touched and inspired many people’s lives and always asked “What is your passion?” Larry firmly believed that every child should have the opportunity to further his/her education, and overcome any illness, disorder or adversity and realize their passions, goals and dreams. Scholarships are awarded to the inspiring young people who live daily with tremendous chronic disorders and still excel scholastically and contribute to their communities. For more information on how to attend or contribute please contact Lisa or Carol
at (518) 661-6005, website:
www.adirondackspintacular.com

---

Cory is one of the 2006 scholarship winners!

Carol Madeiros and Cory Kruger

2007 Lawrence Madeiros Scholarship Winners

Thomas J. Kim, Milpitas, CA and will attend UC Berkeley in the fall, majoring in Pre-Med.

Michael T. Mayers, Crystal Lake, IL, will attend the University of Iowa to pursue a degree in Business Administration

Lindsay N. Norville, Albany, NY attending Emerson College in Boston, Mass. Majoring in Writing and Publishing.

Derick J. Stace-Naughton, Madison, WI will attend Georgetown Univ. and study for degrees in Psychology and Physics.

Hannah L. Taylor, Charlotte, NC plans to attend University of North Carolina, Chapel Hill study in Journalism and Int’l relations

Sarah A. Woodcock, Johnstown, NU will attend Fulton Montgomery Community College, working toward a degree in Nursing.

Congratulations to you all!

---

HFA Conference

The Hemophilia Federation of America’s (HFA) 2007 Educational Symposium took place in Albuquerque, New Mexico March 1-4th. Over 600 people attended. The weekend was filled with great speakers and presentations. Adults heard about the most current issues affecting the bleeding disorders community from leading medical, government, advocacy and industry experts. Children from infants to 18 made new friends in their own programs. Teens and preteens visited Albuquerque museums while the younger children learned Native American dances.

We received the news of Jan Hamilton’s upcoming retirement in November. The HFA gang put on a funny skit for her and played videos of her family.
They shared wonderful stories of past travels with Jan. At the end Jan was given a lovely Pink riding helmet. Upcoming issues will share more about
Jan. We will all miss her but I am sure many have her home phone number!

To close out the weekend, everyone attended an authentic barn dance/southwestern barbeque with entertainment by Native American and Hispanic dancers in costume. New and old friends of all ages left New Mexico armed with new information and fond memories.

The Coalition for Hemophilia B held a Factor Nine Family breakfast meeting there as well.
We had a wonderful turnout and were delighted to meet so many new families. We realize the
importance of support and how much more empowered new families become when they
meet our members. Many old and new members gathered later on that evening to continue earlier discussions, exchange phone numbers, and form friendships.

---

Industry News

Wyeth Parmaceuticals has received FDA approval for the new convenience enhancements for BeneFIX® A 2000 IU vial, a needle-less reconstitution device, a prefilled diluent syringe and reduced diluent volume for the 1000 IU dosage strength.

The new BeneFIX features allow patients to use a lower volume of diluent to administer the product for the most commonly used dosage size (1000 IU), leading to a lower total volume of infused product.

The new needle-less preparation process will eliminate the risk of needlesticks during reconstitution.

Wyeth began shipping BeneFIX with new convenience enhancements to hemophilia treatment centers, home healthcare companies and hospitals beginning July 9, 2007.

It is recommended that you use your current supply of original BeneFIX before beginning to use BeneFIX with the new R2 Kit. Also, do not mix original BeneFIX and BeneFIX with new enhancements because the diluents are different. BeneFIX should only reconstituted with the diluent provided with the dosage vial.

For more information you can call the Wyeth Hemophilia Hotline at 1-888-999-2349.

Grifols: As part of Grifols safety program each vial of Grifols coagulation products is laser inscribed with the lot number identifying it as an authentic Grifols plasma derivative, to help deter tampering. The laser etched lot number into the glass is permanent and legible even if the label is missing, allowing the traceability of each vial.

Grifols also offers a PatientCare Program which is a patient assistance program designed to help provide eligible patients with access to their coagulation products, specifically, Alphanate®, Alphanine® SD, and Profilinine® SD. The PatientCare program consists of two distinct parts:

Grifols Assurance for Patients or GAP Program
Available to patients in the event they experience temporary lapse in insurance coverage. Eligible patients have been treated with Grifols coagulation product for three consecutive months prior to lapse
in coverage through non-government (State or Federal) insurance plan. Applicants must have
US Citizenship or legal resident status.

Grifols Patient Assistance or GPA Program
Available to patients without insurance coverage
and in need of temporary assistance obtaining
Hemophilia clotting factor. Applicants much not
be eligible for State or Federal funding health
plans. You must have US Citizenship or legal
resident status and meet financial eligibility
criteria of 250% of the Federal poverty level.

Patients are encouraged to coordinate enrollment through their factor provider. Enrollment forms for both assistance programs can be downloaded from www.grifolspatientcare.com or by calling 888-Grifols (press option 3).

Grifols Sample Program
Grifols AlphaNine® SD sample program is available for patients who are not currently using this product and/or have not sampled it in the past. Available in vial sizes 500 IU, 1,000 IU or 1500 IU with 10 ml diluent.

You can obtain the sample program through your factor provider or by calling 888-325-8579.

NHF 59th Annual Meeting Florida
Grifols will be sponsoring a breakfast symposium on Factor IX Pharmacokinetics: difference between plasma derived vs. recombinant and their clinical implications. Key speakers: Dr. Cindy Leissinger, Dr. Larry Logan, Bobby, Wiseman, Becky Berkowitz, RN.
Syntonix Pharmaceuticals, a recently acquired subsidiary of Biogen Idec, is pursuing the development of two products that could offer exciting new treatment options for patients with hemophilia. The first, FIXFc, is a long-acting recombinant factor IX product to treat hemophilia B. The product is being developed jointly with Biovitrum of Sweden. The companies intend to file an investigational new drug (IND) application with the FDA by the end 2007. The second product is a long acting recombinant factor VIII for hemophilia A, FVIIIFc, which is in the early stages of development.

Both FIXFc and FVIIIFc utilize the company’s proprietary Fc fusion technology. The products consist of factor molecule fused to the Fc portion of an antibody. Antibodies are naturally produced by the body to help fend off infection. The Fc region is the part of the antibody that allows antibodies to remain in the bloodstream for long periods of time. The FVIII and FIX fusion proteins are able to harness the body’s natural pathway for protecting antibodies against premature destruction and may optimize the properties of the drug by extending the amount of time that the Factor is effective in the body. This could allow for Factor to be injected less frequently.

CSL Behring, change of name from ZLB Behring to CSL Behring. The renaming program, announced by CSL Behring’s parent organization, CSL Ltd., will present a consistent and compelling view of the company’s operating in new and established markets around the world. “CSL has a tradition of innovation with important vaccines and medicines that began 90 years ago and continues to grow,” Said Peter Turner, President of CSL Behring.

“The Behring part of our name originate with Emil von Behring, an innovator with serum therapies won the first noble prize in physiology and medicine. We have changed our name but remain strongly committed to the value of innovation, safety and passion for our customers that we are known for.”

---

SAVE THE DATE

On Saturday, August 25 at the Hemophilia Foundation of Indianapolis Conference, The Coalition for Hemophilia B will hold a Factor Nine Family Meeting from 2:00 – 3:00 pm, Monaco Room B, located on the second floor of the Holiday Inn Select North Hotel, 3850 DePauw Blvd. Indianapolis Indiana. We look forward to seeing our members from Indiana!

---

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