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:
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 few weeks ago, I shared my admiration for my colleague John Taylor, co-founder of the Coalition for Hemophilia B, with information about his role in developing treatment options for people with hemophilia and how that work is continuing with Emergent BioSolutions. I had the chance to meet the Emergent team at the World Federation of Hemophilia Congress in Melbourne this month and see for myself their passion for this community. I wanted to share with you how Emergent BioSolutions plans to provide a different kind of patient experience, so I asked them to share their story with us.
At Emergent BioSolutions, we know that living with hemophilia B is an ever-changing experience. It has been a goal of ours to bring a different kind of experience to hemophilia B patients and families, and we are excited to introduce ourselves to you face to face and learn your personal stories.
Emergent BioSolutions’ history has been one of innovation and growth, while staying true
to our mission—to protect and enhance life. As a global specialty pharmaceutical company, Emergent offers specialized products to healthcare providers and governments to address medical needs and emerging health threats. From our beginnings as a private company with a single location in Lansing, Michigan, Emergent has grown into a thriving public company, with sites around the world and several products contained in the US Strategic National Stockpile. Knowing that the government relies on us for these essential products, we take the responsibility seriously and are proud to participate in helping protect this great country.
Our role as a major supplier to the US government has enabled our expansion into other therapeutic areas. In 2014 we acquired Cangene Corporation, bringing to Emergent over 45 years of experience in providing specialized therapies for the treatment of rare diseases and blood disorders.
Emergent BioSolutions is a different type of company, and we are determined to make a difference for people with hemophilia B and those who care for them. Our long-standing history of providing treatments for people with rare conditions is matched by our focus on improving the lives of these small patient populations. Our continued efforts in these areas have led us to develop the kind of experience necessary to make a positive impact on the hemophilia B community.
Over the course of the last year, Emergent has been passionate about meeting the hemophilia B community and learning all of the incredible stories that families have kindly shared with us. At the National Hemophilia Foundation Annual Meeting in Anaheim, our booth featured a “Make Your Mark” experience, which allowed patients to create a personal hemophilia thumbprint that told their unique story.
Just recently, Emergent traveled to Australia to participate in the WFH World Congress—the largest international meeting for the global bleeding disorders community. There, we learned more about the needs of patients and their families to help us make a difference in the lives of those in the hemophilia B community.
We have been so touched and impressed by all of the personal stories that patients and their families shared with us this year. We are excited to carry on the important work started by John Taylor, and we are proud to continue bringing his vision to life.
You can learn more about Emergent BioSolutions and register for updates at www.ebsi.com/hemophiliab.
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.
HemaBlog Archives
Categories
Download Now
Would you like to be added to our email list to continue to recieve future editions of PEN in PDF format?
LA Kelley Communications - You are leaving our site
You have clicked on one of our advertiser’s links. Our provision of a link to
any other website or location is for your convenience and does not signify
our endorsement of such other website or location or its contents.
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
