July 2014

Have an Art!

I received this exciting announcement from colleague and friend Justin Levesque of Maine–a chance for any artist in our community to present their work at the biggest national hemophilia event in September! Now, many of you may not know but I have an artistic side to me, too. I used to knock off some pretty sophisticated da Vincis. And I know for a fact we have some amazingly talented people in the bleeding disorders community. So let’s see what you’ve got!FOLX is excited to officially announce the opportunity to exhibit your creativity during the National Hemophilia Foundation’s 66th Annual Meeting! Blood Work, the first gallery exhibition to celebrate creative individuals from the bleeding disorders community, will present original works of art and music across several mediums/genres of expression. We invite anyone with ties to the bleeding disorder community to participate in the exhibition using the online form at the website below to submit their work.http://folxfolx.org/bloodwork/

Please take a few moments to carefully read the Terms of Entry. Also, learn more about FOLX’s mission, the jurying process and all submission requirements. If there are any questions about FOLX / Blood Work  or if you’re experiencing any technical issues using this website to submit, please contact Justin Levesque (j@folxfolx.org).

VISUAL ART: Collage, Photography, Woodworking, Performance, Painting, Fashion, DIY house projects… The possibilities are endless! We’re encouraging folks to think outside the box. Submit your creativity in any form! (Due to the nature of the exhibition space, we unfortunately cannot accept 3D works including sculpture, ceramics or installations. However, photographic representation documenting these works is perfectly fine!)

MUSIC: FOLX has joined forces with bleeder music aficionados Blood Vibrations to bring their recent compilations of music from the community to the exhibition. We couldn’t be more excited to have this opportunity. FOLX will construct an interactive exhibition experience that viewers can browse through, listen to full-length music tracks and learn more about both the musicians and Blood Vibrations. In their honor and out of respect for the great work they’ve already accomplished in music, FOLX is calling this experience the Blood Vibrations Listening Center. Please note: Musical submissions do not need to have previously participated in a Blood Vibrations project and should submit their entry using the form at the website. But we highly encourage you consider including your work in a future Blood Vibrations compilation.


Dogs Get Hemophilia, Too

Here’s a wonderful article I discovered on the newswires, and shows that dogs suffer from hemophilia too! This story has a happy ending and makes me wonder if factor concentrate would work on canines as well as humans?
Sick Dexter’s saved…by his hero hound brother! 
By Katie Mansfield
A GREYHOUND won the race of his life – after his brother donated blood to keep
him alive. Dexter, aged six, was close to death after he suffered internal bleeding while undergoing surgery for a suspected muscle tear.
His condition of hemophilia meant he couldn’t stop bleeding and vets at YourVets24,
in Brook Road, Rayleigh, said he needed a blood donor to keep him alive.
So in stepped Dexter’s brother Timmy, also six, to save the day. Both dogs
are now recovering at their home in Richmond Avenue, Shoebury.
Samantha Haynes, 42, Dexter and Timmy’s owner, said she was relieved to have them both back home safe.
She said: “It was very scary and we really thought Dexter was going to die. The vets said if we had not got him there, he would have died. We’ve had them both since they were two and they are part of the family. They had been abused before we got them and Dexter was a nervous wreck – he was even
burnt with cigarettes when he was a puppy. He’s had
such a tough start in life that we couldn’t lose him in this way. They were
in Ireland being trained up and were separated for six months and didn’t even
remember each other. We took them on and they have never raced, and are both still very nervous.
“Dexter is such a loving dog and is so gentle. If he had died we would have been mortified – he is like one of the children. Timmy really did save his brother’s life. They are both doing fine and we are spoiling them both.”
Dexter was taken into the vets after Samantha noticed he was acting strangely. She said: “He put his head on my lap and I stroked him and he yelped in pain. Me and my husband rushed him to the vets.”
They discovered his internal bleeding could not be stopped due his hemophilia, so his only hope was a blood donation from another dog. Fortunately,
Timmy, was a blood match. The family had no idea Dexter suffered from hemophilia. Samantha said: “We have to be extra careful with Dexter now and he is walking in pain.”
Catalina Thiersen, vet at YourVets24, said: “Very few animals under these conditions survive – he’s a very lucky dog.”
The Echo,

John Schmitke: When a Role Model Meets His Role Models

Note from Laurie: I’m sharing this wonderful first-person report from a young man who attended the WFH Congress in Melbourne in May. A refreshing look at a hemophilia congress from a different point of view.

My name is John Schmitke and this is my story. I’m currently the Vice President and Chairman of the Youth Committee at the
Canadian Hemophilia Society, Manitoba Chapter. As a young man living with hemophilia, I recently participated in a program which gave me the opportunity to be the Hemophilia Champion. The project allowed me to raise awareness about the disorder in Canada by taking part in media interviews on World Hemophilia Day and promoting an inspirational video that focused on my life and highlighted how I overcame my adversity.

One of the most exciting parts of the program was that I was to represent Canada at the World Hemophilia Congress in Melbourne, Australia.
The World Hemophilia Congress is an event that allows people affected by hemophilia to come together to discuss the disorder and treatment options. I was extremely excited to be visiting Australia!
Once I arrived in Melbourne, I touched base with my friend Justin who is also the co-chairmen of the National Youth Committee.  He was already at the conference center and had managed to find an organized youth event.
One of the things that I was looking forward to the most on my way to this conference was that I would be meeting people from around the world that had the same but also different challenges that I have had.  Health care in Canada is among the top tier system in the world, which means that there is a lot to be learned from my peers in the tiers below the one that I have been privy to.
When people meet me they would never think that I have a
disorder of any kind, never mind one that typically manifests in physical
symptoms.  This is not the case for
everyone here.
This fact would become more apparent as the week progressed.  I should say that I have always tried
to be acutely aware of what hemophilia is like for the majority of people
suffering from it, but that awareness is much different when those people
surround you.
At this youth event there were people with arms that could
not straighten, knee replacements, in wheel chairs, suffering from inhibitors
that prevent medication from being effective, and just living with daily
reminders of what it is we have.
Adam, Andrew, and Chris had the greatest influence on me leaving this Conference.
I don’t want to focus solely on the trials that this disorder can place on people.  There were others like me, people that have been lucky in their
lives.  People that had no outward symptoms of having a bleeding disorder.  I use the word luck, because luck it would seem in a big part of it.  The other part is we have become very good at managing our bleeding disorders.  Either consciously, or in some cases instinctively, finding a way to minimize the effects by staying ahead of them.
Andrew has an inhibitor.  He also struggles with target joints.  As a result he has had a complete knee replacement and had both of his
ankles fused.  He is only in his twenties.  He has the same type of hemophilia as I do and has had a completely and much more difficult set of challenges than I.  Andrew went through a lot of his life accepting his limitations, but at some point he stopped accepting things for what they were
and decided to make them what he wanted.  He lost a lot of weight, began fitness training, and lived his life the way he wanted to live it.  If you were to ask Andrew he wouldn’t say it was an easy accomplishment, but he would say it was one worth all the effort several times over.
Chris is currently in better shape than I am, which is something that I have never seen in someone who has a severe bleeding disorder.  I know that
sounds conceited, but this level of physical ability is not something that is seen in people with severe hemophilia.  I was surprised, and I admire Chris for what he had achieved, knowing the dedication that it took to achieve it. Let’s just say that I was used to being in the lead in the gym, period.
I have never had the experience of having a hemophiliac come near my physical ability, never mind surpass it.  The experience was both humbling and immensely satisfying.
Adam also left a lasting impression on me.  He’s a young man who relies on a wheelchair  because he’s paralyzed from the waist down.  This is a
result of a bleed near his spine shortly after he was born that was caused by an epidural.  He doesn’t want sympathy; no one with a mental fortitude as strong as his does.  He as accomplished as anyone that I would meet, so he doesn’t need sympathy either.  It is people that are this remarkable that inspire, though.  They are the true role models among us.  To go through life with a severe bleeding disorder as well as being unable to walk, but
accomplishing as much or more than most people with neither of these challenges shows that with effort and the willingness to adapt, these things are no handicap.
The people representing the 120 countries attending this conference have knowledge to be gained.  There are all kinds of sessions on treatment methods, medications, complications, challenges.  But it’s witnessing the culmination of life experience within the attendees that make up the “patient population” that you gain the most.
If I can accomplish one thing in my involvement with my
local, national, and global chapters, it would be to share that knowledge with the effect of changing lives for the better.
I went to Melbourne because some people see me as someone
that has experience worth sharing.  While I believe this, it is the experience of others that drives me to continue living in an exemplary way.
Thank you to everyone that provides me with these types of
opportunities.  Most importantly, thank you to the people that make these opportunities worth experiencing.

Hemophilia B: Explore, Branch Out, Give Back!

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.
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