Book It, Baby

When is it time to start educating your little baby about hemophilia? Now! We’ve got what you need–the only books for toddlers on hemophilia.  Chunky style toddler books to introduce him to hemophilia, using colorful images and simple concepts. We are celebrating publishing our tenth book in the series.

And they are free to families! Order here at LA Kelley Communications www.kelleycom.com

Thanks to author Shannon Brush of Texas, who created the concepts for each book! And to Factor Support Network, and to Bayer for funding the series.

My First Factor: Words, 2008
One-word concepts about family and hemophilia.
Sponsored by Factor Support Network: www.factorsupport.com
My First Factor: Week, 2010
Regular infusions helps a toddler stay active.
Brought to you by Bayer HealthCare
My First Factor: Fitness, 2010
Yoga, playing, laughing and good food keep a toddler healthy.
Brought to you by Bayer HealthCare
My First Factor: Infusions, 2011
What are the steps in an infusion? A first look for toddlers.
Sponsored by Factor Support Network: www.factorsupport.com
My First Factor: HTC, 2011
Who does a toddler meet at the HTC?
Sponsored by Factor Support Network: www.factorsupport.com
My First Factor: Joints, 2012
Let’s name all our joints! How do they work?
Brought to you by Bayer HealthCare
Mis primeras palabras del Factor, 2012
A toddler’s first book about hemophilia in Spanish!
Brought to you by Bayer HealthCare
My First Factor: Safety, 2012
How do I stay safe? Let’s see all the ways!
Brought to you by Bayer HealthCare
My First Factor: Camp, 2014
Your toddler will go to camp one day! What are some of the activities he will do?
Brought to you by Bayer HealthCare
My First Factor: Hemophilia, 2012
What is hemophilia? Bruises, owie, factor!
Brought to you by Bayer HealthCare
My First Factor Coloring Book, 2012
Illustrations from previous My First Factor books to keep your toddler busy and happy.
Brought to you by Bayer HealthCare
My First Factor: Self Infusion, 2015
The 10th toddler book in the series My First Factor helps a toddler know that one day, just as he will tie his shoes and dress himself, he will also self-infuse. Colorful illustrations in a chunky board book make this an attractive addition to this series—your child’s first set of hemophilia books.
Brought to you by Bayer HealthCare

Become a Leader! (Fast!)

We have a lot of programs in the hemophilia community, but this is one of the best. You may need a lot more than just a diploma to secure a great job; you’re competing with talented and smart people. One thing that all prospective employers look for (me included) is leadership: that esoteric quality about someone that sets them apart from the pack. You don’t always learn it in school, but you can learn it here.
I was present in 2006 when a group of great people from our community came up with this idea and presented for funding. The Bayer
Hemophilia Leadership Development Program
(BHLDP) provides college students from the hemophilia
community a unique internship opportunity to build foundational leadership
skills while also deepening their connection to the hemophilia community.
BHLDP, now in its eighth year, gives selected interns an opportunity to work
directly with the Bayer marketing team in Whippany, New Jersey. Interns also
get to experience rotations which include a public policy awareness session in
Washington D.C., a community advocacy-focused visit to National Hemophilia
Foundation in New York, and activities with Bayer’s partners. 
When discussing their favorite aspects of the internship process, the former interns commented that they were surprised—and thrilled—by the amount of real work they were able to do during their time with Bayer. “We were exposed to real meetings and real experiences,” said Lewis Chesebrough, a 2012 BHLDP intern. “We participated in a
real professional environment with people who were supportive and kind to us.”

In addition to getting to do real, meaningful work, the program also helped interns chart a course for their future. Christian Mund, a member of the 2013 internship class and a junior at Syracuse University, said that his Bayer internship helped him realize marketing was the path he wanted to pursue following graduation. “Before the internship, my local sales representative asked what I wanted to do after college; I had no idea. After I finished the BHLDP internship program, I knew marketing was what I wanted to do because the internship really opened my eyes to what I could do after graduation and now I am looking for other internships in marketing.”

Following a BHLDP internship, many former interns have stayed involved in the hemophilia community. Rich Pezzillo, a member of the 2007 internship program, is now the Communications Director at the Hemophilia Federation of America (HFA). “The BHLDP internship helped give me direction on what I was most passionate about and how I felt most
fulfilled,” said Pezzillo. “I now have opportunities to help other young adults that may not have the proper resources or the family to talk to about what it is like to have a bleeding disorder.” And Aaron Craig, a member of the 2010 internship class, started a company called Microhealth that developed an app for the hemophilia community that he says is like
“Facebook for the health care system of hemophilia.”

Bayer is currently accepting applications for the 2014 Bayer Hemophilia
Leadership Development Program. Applications for the six-week, paid internship
are due by Friday, February 28, 2014. (Yeah, I put that in red, so move on it!) For more
information and to apply visit https://www.livingbeyondhemophilia.com/webapp/index.jsp

For US patients only.
(Truth in advertising: The above is an unpaid announcement for the common good)
Great Book I Read
Act Like a Lady, Think Like a Man: What Men Really Think About Love, Relationships, Intimacy, and Commitment   by Steve Harvey

This was a gift from my co-worker Zoraida, who obviously thinks I need help in the dating department. She might be right, after reading this hysterical and no-nonsense view of how women should date from a man’s point of view. Blunt and taking a somewhat dismal view of men in general (think “dog training”), there are still some nuggets of truth here and it’s a whole lot of fun to read anyway! Men are not just from Mars, they are an entirely different species altogether and in sever need of BF Skinner’s behavioral training. I read it in one night and laughed a lot. And learned a few things. Three/five stars

Kogenate® FS’s New Vial Adapter

Every now and then, I’ll be posting news items from the news wires, to keep our readers updated with new offerings related to their treatment. Today I’m posting about a new reconstitution system for Bayer HealthCare’s Kogenate®FS antihemophilic factor (recombinant). (Please note this is not a paid advertisement but just an educational service to our readers. The new “Vial Adapter” offers Kogenate® FS users an additional choice in reconstitution systems.Vial Adapter is a needleless reconstitution system that contains a sterile chamber with a built-in 15-micrometer filter and a prefilled diluent syringe.

From Bayer’s press release: “Innovating in order to provide two reconstitution systems, Vial Adapter and BIO-SET®, is a great example of our commitment to delivering options that meet the needs of the entire hemophilia A community,” said Pamela Cyrus, MD, Vice President and Head, U.S. Medical Affairs, Bayer HealthCare Pharmaceuticals.

Both Kogenate® FS with BIO-SET® and Kogenate® FS with Vial Adapter are available in Grab and Go packaging, which includes:
·        A prefilled diluent syringe
·        The Terumo® SURFLO® Winged Infusion Set
·        Alcohol swabs, a cotton pad and a latex-free bandage
·        Exclusive anti-counterfeiting and tamper-evident features
·        Alcohol swabs, a cotton pad and a latex-free bandage
·        Exclusive anti-counterfeiting and tamper-evident features


Kogenate® FS, antihemophilic factor (recombinant) is indicated for:
·        Control and prevention of bleeding episodes in adults and children (0-16 years) with hemophilia A
·        Peri-operative management in adults and children with hemophilia A
·        Routine prophylaxis to prevent or reduce the frequency of bleeding episodes in children with hemophilia A and to reduce the risk of joint damage in children without pre-existing joint damage

Kogenate® FS is not indicated for the treatment of von Willebrand disease.


Kogenate® FS is contraindicated in patients who have manifested life-threatening immediate hypersensitivity reactions, including anaphylaxis, to the product or its components, including mouse or hamster proteins.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit http://www.fda.gov/medwatch, or call 1-800-FDA-1088.

For important risk and use information, please see the full prescribing information at https://www.kogenatefs.com/webapp/prescribing-information.jsp

Great Book I Just Read
Something Wicked This Way Comes by Ray Bradbury [Kindle]

Many of us read Ray Bradbury books, like Fahrenheit 451, in high school. He is so worth reading again. In time for Halloween comes this 1962 October horror/mystery story that reads lyrically, like poetry, like artwork. Two 14-year-old best friends, Jim Nightshade and William Halloway, who live in Green Town, in the midwest, are intrigued by the dark and mysterious carnival that roars into town at 3 am one morning, long after all carnivals have packed up for the season. Headed by a fully illustrated, tattooed Mr. Dark, the carnival has a deep secret to protect, and becomes a threat to the townspeople. Mr. Dark bears a tattoo for each person in town he manages to lure into the carnival–to the carousel that twists time, or the house of mirrors that strands souls… and never lets them go. Only one person can save the townspeople… The writing is absolutely superb, colorful, vivid and memorable. The three page description of the carnival train pulling into the outskirts of town alone will stay with you. Great fall/Halloween reading for young and old… which is, by the way, one of the themes of the book! Five/five stars.

Adrenaline Junkies, Take a Hike

At Thanksgiving last week, my family gathered for dinner and in swapping motorcycle and adventure sport stories with four of my six brothers, someone remarked about the “adrenaline junkies” in the Morrow family (my maiden name). True, but I reflected our hemophilia community has a few of those as well. This summer we watched Barry Haarde bicycle 3.677 miles across  America to raise funds for Save One Life, my nonprofit that supports kids with hemophilia in developing countries. And we saw Eric Hill and Jeff Salantai of BioRx scale Pico Duarte, the highest peak in the Caribbean, to raise money for the Dominican Hemophilia Camp, which Save One Life supports.

And last year I summited Mt. Kilimanjaro with eight others, including Eric and Jeff, to raise over $66,000 for Save One Life. Now, Barry and I just jumped our of a plane last week at 18,000 feet, but we didn’ raise any money–it’s an idea, though!
But you don’t have to be an adrenaline junkie to help support a good cause. Try walking!
Bayer has just announced the winners of its virtual walk, a successful fundraising efforts to help hemophilia chapters and–I am grateful and proud to say– also Save One Life. (www.saveonelife.net)  See below, register for next time and then… take a hike!
The 2nd Annual Virtual Walk for Hemophilia is  proud to announce the top 5 participating local National Hemophilia Foundation (NHF) chapters who rallied the most virtual walkers!
First Place with $15,000 in sponsorship funds:
Arizona Hemophilia Association
Second Place with $10,000 in sponsorship funds:
Bleeding Disorders Alliance Illinois
Third Place with $5,000 in sponsorship funds:
Texas Central Hemophilia Association
Fourth Place with $2,500 in sponsorship funds:
Nevada Chapter, National Hemophilia Foundation
Fifth Place with $1,000 in sponsorship funds:
Nebraska Chapter, National Hemophilia Foundation
We, at Bayer, are delighted to provide these chapters with sponsorship funds to continue their hard work in supporting the bleeding disorder community.
Furthermore, we are privileged to present the National Office of the NHF in New York with $30,000 in sponsorship funds to assist them in continuing to improve and enhance the lives of those who live with bleeding disorders. And we were able to provide $7,000 in sponsorship funds to Save One Life, a non profit organization that offers the opportunity to sponsor a child or adult with a bleeding disorder in a developing country.
Thank you again for making this Virtual Walk possible!
©2012 Bayer HealthCare Pharmaceuticals, Inc. All rights reserved.
BAYER and the Bayer Cross are registered trademarks of Bayer.
4/12 KN09001812

From the Philippines to New Jersey


We were really blessed to have a very special visitor last week: Andrea Trinidad-Echavez from Manila, the Philippines. Andrea has von Willebrand Disease, as does her third child, Star. She manages the best she can in a country that buys no factor products. Imagine! We’ve tried to help her when we can through Project SHARE. But at some point, the Philippines must lobby to get legislators to approve a line item for factor.

If anyone can do that, it’s Andrea.

She has a journalism background, and also knows scores of high-level politicians. With her charm, poise, intelligence and fierce determination, I believe the Philippines will eventually join the countries in the developing world that buy factor. It’s possible! I point people to Honduras, one of the poorest in this hemisphere, which buys product.

Andrea and I met in October 2008, when I visited the Philippines. I was so impressed with her skills, and was delighted that she could come and stay with us. It was just cool enough that we could have a fire–her first ever in a fireplace!


Our first stop was a visit to see Wendy Owen at New England Hemophilia Association, for a meeting about NEHA’s successful lobbying strategies. Then back to Georgetown to meet with Kathryn Ondek, with our own Project SHARE. Then down the hall to meet with the ladies at Save One Life to discuss how the program is running in the Philippines.

Andrea discovered our puppet Bob, created by Wyeth (now Pfizer). Bob is a teaching puppet, and you can look into his joints to see a bleed, or check out his port. She loved it and wanted to bring it home to use with the kids.

The next day, Andrea and I were up early to fly to New York City, her first time there! Bob garnered many stares as we sat on the plane, then took the tram through JFK! One passenger walked up and said, “Wassup!” to Bob, who of course didn’t answer!



I took a rental and we drove through NYC to New Jersey, for a visit with Octapharma. We were both interested in this meeting as Octapharma just this year had “wilate,” their plasma-derived VWD product approved. We met with sales reps and executives. Then on to our hotel.

On Thursday we met with the global staff at Bayer Healthcare in Wayne, to speak about factor donations and other projects we have. After that, Andrea took a car to meet with NHF CEO Val Bias, at a restaurant. I had a bad feeling about being in a rental, in NJ, and needing to get to JFK at rush hour on a cloudy day. Sure enough, if you followed the headlines, a tornado blasted through Queens, only about 15 minutes before I arrived. I was on the Van Wyck expressway when it tore through. It was amazingly powerful. When I passed by this over turned tractor-trailer (one of three, all in the same place!) the entire expressway looked like an angry giant had rampaged through it and lopped off the tops of trees, stripped branches completely off trees and crushed cars. Glass, branches, cars.. what a mess! I didn’t get home till 5 am.
(Photo: With Cindy North of Bayer)

Andrea is bound to learn a lot from some very experienced people like Wendy and Val, and made some great contacts at the companies. We are committed to helping the Philippines improve its health care for hemophilia, but the only way it can be done it by lobbying the government. Andrea and her team now have what they need to get started.

You can read more about Andrea at her blog: www.fortheloveofstar.com

Great Book I Just Read
Great Expectations by Charles Dickens
I am ashamed to admit that this is the first Dickens book I have ever read. This is a classic: the story of Pip, an orphan, who lives a difficult life but who one day receives a fortune, from an unknown benefactor, to make him a “gentleman.” Pip is rich, but the humble boy becomes spoiled and vain, and turns his back on those who loved him most. The story shows how our values can change when he suddenly occupy a different station in life. Eventually he learns great lessons of life through strife, evil in others, and heartbreak; every character in this book seems to mature and grow in relation to one another. It’s a great story with timeless characters but it’s the writing–the writing is pure ecstasy, like ingesting literary Godiva’s every other page. I am weighted with words now, beautiful images, witty lines, twists of phrases. I didn’t know writing could be so mesmerizing and purely pleasurable. Four stars!

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