Coalition for Hemophilia B

Calling All B’s—Be a Part of the Generation IX Project!!

Laurie Kelley January 25, 2015
Back in July, I blogged about a new adventure opportunity called the Generation IX
Project. A mentorship program for teens and young adults with hemophilia B,
this program kicked off in October with an adventure retreat outside of Portland, Oregon (my kind of fun!).
From the looks of it, the guys had a great time! Check out the video  from the weekend.  
The next program is scheduled for June 9–14, 2015, and the Coalition for Hemophilia B is now accepting applications. If you are between the ages of 14 and 30 and
have hemophilia B, don’t miss your chance to be part of this great experience! The
program is proudly sponsored by Emergent BioSolutions.
Download the application for mentors or for teen participants for your age group and send it to Kim Phelan at hemob@ix.netcom.com at
the Coalition for Hemophilia B to reserve your spot today.
More about the Generation IX Project
The Generation IX Project is an adventure education program created by the Coalition for Hemophilia B with the support of Emergent BioSolutions. Led by Pat “Big Dog” Torrey and his company, GutMonkey, this national
mentoring program for young adults and teens with hemophilia B provides participants the opportunity to learn tangible mentoring skills through experiential learning in an unforgettable environment.
Check out what participants had to say about Generation IX:

“I really enjoyed being able to meet a group of complete strangers
with hemophilia B, and at the end of the program feeling like I have known them
for much longer than a week.”

 
“Even though we came from different places, we came together and
supported strangers as if we knew them our entire lives.”
 
“The part that will stick with me is knowing to trust the people around me.”
For more information about the Generation IX Project, check out the Generation IX Project Facebook page.
To learn more about how Emergent BioSolutions is making a difference for people living with hemophilia B, register for updates at www.ebsi.com/hemphiliab.
This announcement was sponsored by Emergent BioSolutions.


Great Book I Just Read

Surviving Survival: The Art and Science
of Resilience 
Laurence Gonzales

Perfect book to accompany those Gen IX adventurists! An expert in studying the field of survival, Gonzales examines through a variety of real-life tragedies, disasters and situations, why some people survive, the strategies they use and more importantly, how they continued their lives despite the PTSD and other after effects. How the brain is biologically altered after a trauma, and what successful survivors share in common by way of thinking, personality, life strategies. Four/five stars!

Hemophilia B: Explore, Branch Out, Give Back!

Laurie Kelley July 6, 2014
Anyone who reads my blog—even occasionally—knows I love adventure. In fact, I am on my way today to go white water rafting in Maine… class IV and V rapids! I love adventure, and thankfully for me, I was motivated and influenced by some incredible people—starting with my six
brothers! Based on those positive experiences, I’m motivated to share with my readers a new adventure opportunity that I recently discovered.

Pat “Big Dog” Torrey
Please read below about this great opportunity from the Coalition for Hemophilia B and
Emergent BioSolutions!
The Generation IX Project is a new adventure education program being offered by the Coalition for Hemophilia B, with the support of Emergent BioSolutions. This national mentoring training program for young adults and teens with
hemophilia B will provide them the opportunity to escape the everyday routine and learn some adventure skills in an experiential program. The Generation IX Project is designed to develop specific and tangible skills that will enhance the quality of life and give a better sense of self to young adults with hemophilia B.
The leadership of the project is being guided by Patrick Torrey, president and founder of Physis, Inc. Pat “Big
Dog” Torrey has been designing and delivering innovative experiential education programs and trainings for over 15 years.  Pat started and runs Physis.  Physis offers unconventional, adaptable, relationship-centered
adventure education programs that teach those with chronic medical conditions how
to lead rock-star lives.  He challenges and inspires people to explore
outside of their perceived limits and strive for excellence in their lives.
He and his staff run trainings and consult within the bleeding disorder
community for camps, foundations, and conferences.  Physis has been
running some of the most successful, fun, and sought after programs in the
bleeding disorder community for close to a decade.
Since its inception, Physis has worked to serve the bleeding disorder community and seeks to continue developing programming that empowers teens and young adults. This dynamic collaboration from Physis, the
Coalition, and Emergent is sure to create a life-changing experience for all involved.
Calling All Mentors
If you are an adult between the ages of 18 and 29 with hemophilia B, you have already experienced a lot of bumps in the road on your way through your transition to independence. As a Generation IX mentor, you’ll share your experience and the insights you’ve gained with a group of teen mentees and have an amazingly important impact on their lives. You will begin your training as soon as your application is accepted. You’ll be flown to a
multi-day retreat at beautiful Camp Collins, a state-of-the-art camp facility just outside Portland, OR.  Camp Collins is home to villages of ‘out of the ordinary’ cabins that are perched in the forest canopy connected by a walkway, and contains one of the nation’s most diverse high ropes challenge courses. There, you’ll
participate in intensive onsite training and then host a mentorship retreat for your teen mentees. The leadership skills and volunteer experience you will gain will look great on your resume!
As a mentor, you will participate in a two-day experiential training program in interpersonal skill development and group dynamics, as you find your personal leadership style while you learn and live with a group of other motivated mentors. This is all in preparation for when you help deliver a challenging and meaningful residential weekend program for a group of teen mentees. The instructor team will help guide the process as you get to immediately practice the skills learned.
Calling All Teens
The Generation IX Project gives you and other teens (age 14-17 years) with hemophilia B an adventure and the experience of a lifetime. You’ll learn solid skills from Generation IX mentors a few years older, who also have hemophilia B and are familiar with the many changes teens experience, such as heading off to college, going off on their own, and taking more responsibility for their treatment. These mentors will guide you
through a weekend of high ropes challenge course experiences, living in a temperate rainforest, and connecting with other participants living with
hemophilia B from around the country. This is a chance to expand your life experiences, improve your quality of life, and build your self-esteem—you might just be amazed at what you can do!
Living with hemophilia B is an ever-changing journey, and teens and young adults with hemophilia B are becoming more independent than ever and
taking responsibility for their own care. The Generation IX Project sounds to me like a fantastic opportunity to meet some of your peers and share your experiences.
Download additional
information and an application form here:

Teen Application

Send your completed application to Kim Phelan at hemob@ix.netcom.com at the Coalition for Hemophilia B to lock in your spot. Applications are due  August 1st! Get moving!
To learn more about how Emergent BioSolutions is making a difference for people living with hemophilia B, register for updates at www.ebsi.com/hemophiliab.
This announcement was sponsored by Emergent Biosolutions.

A Promising Future with Hemophilia B

Laurie Kelley May 4, 2014

 

I’ve always been an admirer of John Taylor, and I’ve known him since both our boys with hemophilia were born in the
1980s. His story is so inspiring! I am pleased to share some of his trials and triumphs, as well as his outlook on hemophilia B and the factor IX product he is helping to bring to market. 
John Taylor Sr.
 
————————————————————————

by John Taylor Sr.

Nearly 25 years ago when our son, John Taylor Jr., was born, my wife Joyce and I were informed that he had hemophilia B. This diagnosis changed our lives. When your child has hemophilia, it’s all encompassing. As a family, you struggle through it every day. But what started as an unknown,
daunting journey has developed into an expedition of hope.

 
In 1990, we were told that there were few treatment options for John. Determined to find the right
treatment and support for ourselves and other families coping with hemophilia B, we reached out to the scientific community. This quest led me to incredible passages in life—founding the Coalition for Hemophilia B in 1990, becoming an activist for FDA approval of additional factor treatments, and starting a company dedicated to advancing access to hemophilia B treatment.
 
That company was called Inspiration Biopharmaceuticals, which our family co-founded with Scott Martin, another father of a son with hemophilia. Our mission was to bring product choice and access to the hemophilia B community. Because we understood the impact of this condition on our own families—as well as many other families we met also coping with hemophilia—we were determined to start a company that would address the concerns we were all living with. Thanks in part to our work, a lot has changed for families living with hemophilia B.
 
When Emergent BioSolutions, a company whose goal is to improve the lives of people with rare conditions, acquired the recombinant Factor IX we were developing, families felt empowered knowing that there was now a company that was working directly for us. 
 
One demand that is finally being addressed by pharmaceutical companies is treatment choice. Soon, people with hemophilia B will have even more product choices for bleed control and prevention than ever before.
 
One product I am particularly excited about is IB1001, from Emergent BioSolutions. IB1001 is a recombinant factor IX product that began
development at Inspiration Biopharmaceuticals. I am so proud to see Emergent continue the work we began at Inspiration, and to know that they are seeking to gain approval for IB1001. Emergent’s focus on developing treatments for rare conditions and blood disorders and their experience

in addressing the needs of small patient populations makes them a welcomed addition to the companies serving the hemophilia B community.

 
Emergent’s mission is simple—to protect and enhance life.  Although they are new to the hemophilia community, their commitment to IB1001 and to improving the lives of patients with hemophilia B makes me eager to see them bring to market a product I believe in so strongly.
 
When I reflect on this journey, I can honestly say that every stop along the way—and every person I’ve met from our community—have added incredible value to my life. My son and this amazing community have given me the drive and determination to keep going. When a company like Emergent comes along and commits to understanding and responding to the needs of the hemophilia B community, I can confidently say that my journey has been worthwhile. With dedication and the commitment that come from having lived with the condition, and a thorough knowledge of our
community, we are proud to have been part of the development of a new recombinant factor IX product. Standing with you, from a family like yours. This is a journey we are taking with all of you.
 
 
 John’s work on behalf of the hemophilia B community continues to make a positive impact. If you’d like to learn more about IB1001, the product he helped develop, and Emergent BioSolutions’ efforts to finish the work John began, please visit www.ebsi.com/hemophiliab. To learn more about the Coalition for Hemophilia B, visit http://coalitionforhemophiliab.org


This is a sponsored public awareness notice.
 

New Factor IX Products in Development

Laurie Kelley January 14, 2008

What’s going on with hemophilia B? A lot! I’ve read recently about four new studies about new products for hemophilia B patients. In a nutshell:

A. Inspiration Biopharmaceuticals (www.inspirationbio.com) has signed an agreement with Cook Pharmacia to develop an injectable recombinant factor IX. So, what’s new about that? I mean, we already have that. Well, Inspiration is focusing on revolutionizing hemophilia treatment in two ways: 1) developing lower-cost versions of existing intravenous recombinant therapies; and 2) developing non-invasive administration of therapies. Like inhaling? (Hence the name, Inspiration? Just a wild guess)

B. Baxter International (www.hemophiliagalaxy.com) has begun preclinical work on a genetically engineered product for bleeding in patients with hemophilia B. Again, we already have that, so what’s new? With its partner Nektar Therapeutics of San Carlos, Calif., Baxter wants a more long-lasting treatment for hemophilia B. Imagine infusions lasting all week instead of a day, or maybe two weeks!

C. Nastech Pharmaceutical (www.nastech.com) has begun a feasibility study with an undisclosed global leader in the production of plasma products. The study will examine the possibility of developing an alternative delivery method of factor IX without an injection. Not much said about this one: who’s the company? What’s the method? More to come, hopefully!

D. GTC Biotherapeutics, Inc., of Framingham, Massachusetts, has purchased a license to develop a new recombinant factor IX product with ProGenetics LLC of Blacksburg, Virginia.

Currently, the only existing recombinant factor IX product is BeneFIX, made by Wyeth Pharmaceuticals of King of Prussia, Pennsylvania. But there sure is a lot of commercial interest in this hemophilia population, which is a small. Of the approximately 17,000 people with hemophilia in the US, only about 15% are estimated to have factor IX deficiency.

If this is all interesting to you, then see about attending The Coalition for Hemophilia B one-day consumer symposium on Saturday, March 8, 2008, from 9:30 am–5 pm, at the Millennium Broadway Hotel in New York City. For information, call Kim at 212-520-8272 or email her hemob@ix.netcom.com

Great Book I am Reading: Dreams from My Father: A Story of Race and Inheritance by Barack Obama. I thought, oh great, a book ghostwritten for a politician seeking election. But I was wrong. He wrote this in 1995, when he was a senator-elect. I am captivated already: it is honest, intimate, frank and eloquent. This is a guaranteed great read (and not a political endorsement), and I always appreciate a well-written book. I am only on Chapter 3 but it is insightful and informative. Obama has led an amazing life, and in this book, he traces his roots, from his grandparents to his childhood, and the unusual path his genealogy has taken and why. Eventually he returns to Kenya to learn more about the father he barely recalls. This is a look at race relations in America, one man’s quest to make a difference for his race, and a quest for the meaning of family for a man who was raised in several diverse cultures. (For those of you fearing I am making a “statement,” I also have it on my list to read John McCain’s book, Faith of Our Fathers, also about the impact his grandfather and father had on his life. ). Three stars out of four.

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