Blog Archive

Sunday, August 30, 2015

An Opportunity to “B” Educated!


Education is important to me. I’ve always encouraged people with hemophilia to not let hemophilia stop them from getting the best education they can get.

The B More ScholarshipTM helps deliver a brighter future to people with hemophilia B by assisting with the cost of post high school education. And that goes beyond college—B More Scholarships cover undergraduate, graduate, and doctoral programs, trade schools, and certificate programs in the United States. Student can be enrolled full time or part time. There is no age limit, and scholarships are awarded on a number of criteria.

The application period for the 2015-2016 school year is open NOW. If you have hemophilia B and will be pursuing a higher degree this fall, apply now at  BMoreScholarship.com. The deadline for your completed application is September 30, 2015, so don't put it off!


This announcement was sponsored by Emergent BioSolutions.



Great Book I am Reading

Little Princes: One Man's Promise to Bring Home the Lost Children of Nepal [Kindle]
Conor Grennan

I'm in Nepal this week, and found the perfect book to read while here. This powerful memoir begins with a nice young man infected with wanderlust who decides to travel around the world for a year in 2004. He volunteers at an orphanage in Nepal for three months during this time, and humorously shares his first exposure to Asia, and apparently to children! What starts off as light and whimsical writing gets serious, as Conor becomes attached to the children, becomes their advocate and then learns, with the ongoing Maoist rebellions flare ups, that these children had parents—they were trafficked. Sold. He begins a quest to find the parents. He faces bankruptcy and sacrificing his personal life at a time when his peers are partying and enjoying careers, to help these children. He forms a nonprofit, Next Generation Nepal, and dedicates his life to helping these victims of civil war in Nepal. To date he has helped 400 children become reunited with their families. Not only is this a fascinating story of how one young man discovers his purpose in life, it's a very well written book! (And I can be critical of that) Read this and get inspired. Four/five stars.

Sunday, August 23, 2015

Pfizer Releases Exciting New Features for HemMobile App


I always say that with a background in statistics and economics, I love collecting data. I have a spread sheet of all my workouts going back years, tracking how many miles run, weights lifted and more. I keep a spreadsheet of all the books I've read for the past 10 years! And I don't even need to do this stuff. 

One thing you should do if you have hemophilia is track your bleeds. Check out Pfizer's app for tracking all things hemophilia.—Laurie



Hemophilia can be difficult, but tracking it doesn't need to be. Thanks to the Pfizer Hemophilia Team, HemMobile now provides activity tracking and is integrated with the new HealthTM app for iOS 8 and Google Fit™ for AndroidTM. This will allow you to seamlessly transfer data from wearable devices and other fitness apps right into HemMobile. With the ability to track activity along with your infusions, you can have access to important information you need to have more informed discussions with your physician. This is particularly important for the hemophilia community, because maintaining an active lifestyle can help to strengthen joints and protect against bleeds.

The updates to the app are a result of partnering closely with not only expert developers and physicians, but also members of the community who use the HemMobile app every day.

With the latest version of HemMobile you can:
·      Log activities, infusions and bleeds
·      Share single consolidated reports with your treatment team
·      Set reminders for resupply, appointments and much more
·      Find nearby hemophilia treatment centers and National Hemophilia Foundation chapters
·      Personalize your profile

Learn more about Pfizer’s commitment to innovate and tailor technology to meet the needs of patients within the hemophilia community by visiting www.HemophiliaVillage.com. The app is available for download in Apple’s App Store and through Google Play.

Also connect with others in the Hemophilia community and stay up-to-date on hemophilia resources, support and news over on Facebook at www.Facebook.com/OurHemophiliaCommunity.

iPhone is a trademark of Apple Inc., registered in the U.S. and other countries. Health is a registered trademark and App Store is a service mark of Apple Inc. Google Fit is a registered trademark, and Android and Google Play are trademarks of Google Inc.

The content of this post is provided and sponsored by Pfizer.


Interesting Book I Just Read

The Stranger Beside Me [Kindle]
Ann Rule

The original story about serial killer Ted Bundy, who was executed in 1989 after killing many young women. Author Ann Rule just recently died, and when I read about her death, recalled I had read this book decades ago and wanted to revisit it. My writing has matured a bit because what I thought was an excellent book is actually pretty mediocre. Rule's claim to fame is that she worked next to Bundy at a crisis hotline center, and became friends with him through the years. Oddly, as a crime writer, she was commissioned to do a book about the serial killings of the young men of Washington and Utah, never believing it was Bundy, even when all evidence seemed to point to him.  As a journalist, Rule is very dry and factual (this is no In Cold Blood), and yet, she interjects her own feelings about Bundy constantly, almost bizarrely. She was "frightened" when in prison he threatened to commit suicide. Rule writes much too much about Bundy's love triangles, and not about the investigations. There's a level of depth missing here; we never learn or approach why Bundy behaved as he did. We get a good chronology, but little insight. It's a decent read: chilling, captivating, but at times too dry and lacking, with too much of the author's feelings and personal life interjecting and interrupting. The update in the front is very choppy and detracts from the book—should have been placed in the back. You may note that the movie Silence of the Lambs' antagonist used Bundy's trick of luring women. Two/five stars.

Sunday, August 16, 2015

Boots on the Ground: NHF’s 67th Annual Meeting


At least something at the Dallas meeting was older than me—the NHF! This is my 24th year of attending NHF meetings and I was thrilled to catch up with so many colleagues and friends. 

Kim C. and John Urgo
of RUSH, with Zoraida
“Boots on the Ground” refers, I think, to our exceptional advocacy work, a history of which I liken to the Big Bang theory. At one time there was darkness out of which an explosion heard around the universe occurred, and new stars were born. The darkness, of course, was the HIV era, the “holocaust” in the words of many, when half our already small community was decimated by contaminants in the nation’s blood supply and blood-products used for clotting blood. The Big Bang was the outcry from patients, who formed groups like the Committee of Ten Thousand, and later Hemophilia Federation of America, to take on corporate America and the government of the United States itself. These people—Corey Dubin, Dana Kuhn, Tom Fahey, Val Bias and more—were our stars, emerging through that dark time. Many of our stars have burned out, passed away, but many still burn bright.
Laurie Kelley with Texas hemophilia friends Andy Matthews
and the famous Barry Haarde!

They’ve now harnessed all that energy, knowledge and power and shine it on industry and insurance companies, protecting our need for safe products, available products and access to all products. And with them are hundreds of families who have joined that cause.

To remind us all of where our advocacy comes from, NHF spotlighted Ryan White, one of our community’s first advocate, certainly our first child advocate. An Indiana native, Ryan won the right for all children to attend school who had hemophilia and AIDS; his mother Jean White was interviewed and I think we all had tears, when she teared up. There are not enough words to express how courageous that boy was.

NHF Chair Jorge de la Riva gave an impassioned speech that praised the efforts of all our community to stand up and protect our needs and rights. He also challenged us all to look deep within to ask What more can we do? Can I do? We can all do something.

NHF CEO Val Bias’ speech stood out for his challenge to include the fringe members of our community, especially women with bleeding disorders (who are really not just carriers), inhibitor families and those with rare bleeding disorders, like factor XIII. Indeed, he called out to those members to stand and be welcomed, and the audience exploded into applause when an entire row arose.

I would add to that the LGBT community, which has existed quietly. And yet they are some of our greatest activists. Don’t know what LGBT stands for? It’s time to look it up, and get to know them.

Someone older than me? Joe Pugliese,
my oldest friend in hemophilia
Pharmacokinetic testing was a hot topic: how does your child react to infused factor, especially if he is on prophy? Only one way to learn how quickly the factor fades over time from his body. Not every child can be prescribed a three-times-a-week, Monday/Wednesday/Friday prophy regimen. Running a blood test consecutively over a few days to test his levels will reveal how quickly factor is used up—in other words, what’s his unique half-life? This topic dovetails perfectly with the release of our one-time newsletter YOU, arriving in your mailbox soon! It’s all about your child or loved one with hemophilia’s unique needs, including his or her particular half-life, so vital to know.

One huge change I noticed? Years ago, specialty pharmacies and homecare companies dominated the exhibit hall floors, with stuffed bulls to ride and take a photo with) and even once a huge pirate ship (remember the pirate ship anyone?). These companies outdid each other in a bid to get potential consumers to their Vegas-style booths. Now, they have shrunken to little booths on the periphery, while the megabooths and choice space goes to pharma. Why? Specialty pharmacies have consolidated into a few monster, dominant entities. They don’t have to compete for business anymore; they own us. Pharma on the other hand, is competing fiercely for your attention with a glutted pipeline of products in clinical studies. Prepare for lots of pharma advertising in the new year.


Please go on line and read up on the three-day annual event, which brought treatment staff from HTCs, consumers, nonprofits, manufacturers and homecare companies all together for hours of learning and connection. Congratulations, NHF, on another successful year! Keep  these boots on the ground, with sharp spurs.
 
More photos from the event to come!

Good Book I Just Read
How to Love [Kindle]
Thich Nhat Hanh

Short essays on the nature of love, peace and how to find these traits within so you can better  encourage the transfer of these to others in need. Like all Hanh’s books, it is easy to read and leaves you feeling more tranquil and loving. Three/five stars.

Sunday, August 09, 2015

Yemen: Becoming Each Other's Heroes

While many of us in the bleeding disorders community head to Dallas this week to attend our national conference, halfway around the world, a young man with hemophilia struggles to make a difference. Abdulhakeem Saeed As-Sabri is only 27, and shouldering the leadership mantle in a country of 24.1 million, a country that is one of poorest and most violent in the Middle East. His efforts are impressive, his obstacles huge. Read about his dreams and be inspired. 



Yemen's Life Pulse: Social Entrepreneurs
Posted 7.27.15

By Abdulhakeem Saeed As-Sabri

We don't fit the mold of typical "heroes," especially not here in Yemen.

Very often, people think physical weaknesses lead to low performance levels. But earlier this year, my friends and I ­­ all of us hemophiliacs ­ ­ helped to rescue a child by getting him urgent medical care.

I'm 27 years old and I live in Sana'a, the capital of Yemen. I did not grow up dreaming of becoming a social entrepreneur who would found an organization to help save lives. But that was before I knew that I had hemophilia, in a country where there are no specialized medical centers to help hemophiliacs.

Hemophilia is a disease where your body can't clot blood. It prevents a person from living normally, like anyone else in the community. Here in Yemen, hemophilia patients can't secure medical treatments easily. If you don't have hemophilia, it's hard to understand what it means for the people who do. As a hemophilia patient, you suffer physically and psychologically: you can't practice any sport except swimming, and you can't walk for long distances. Any simple injury endangers your life. As a child, I wasn't able to play with other kids, because I could get injured. As an adult, I couldn't build relationships with others, and I had to be absent from school and university for long periods of time.

The only solution to the disease is to have the medical treatments you need on time. But in Yemen, very few hemophiliacs can get the care they need, even before the most recent violence started. I believe we can make change. Why? Because a few years ago, after 18 months of unemployment, I went through a professional training program to help me find a job. But the skills I acquired during this training pushed me to do more, and to overcome my disease and follow my dream. After I finished this program, offered by Education For Employment, I got a job that I was passionate about, and this was life­changing. I no longer felt incapable or discouraged. I became ambitious and confident in my skills. I challenged myself in ways I never thought were possible, and I learnt especially the importance of getting involved and helping others.

So, I founded "Life Pulse."

Life Pulse is an initiative for all hemophilia patients that encourages them to participate in the society as effective people working for the sake of the development of their country. Life Pulse Initiative doesn't have special donors but we rely on loans, and people's donation of medicine. The beginning of the initiative was with the support of Yemen Education For Employment and Al­Atta'a Foundation for supporting hemophilia patients; without this support, it would have been impossible for me to bring "Life Pulse" to life.

Today, "Life Pulse" is changing many people's lives. We teach first­aid methods that help save lives, we try to develop and improve blood transfusion services, we take part in blood­donation campaigns during World Blood Donor Day, we participate in youth­initiative conferences, and most importantly, we train groups of patients and coordinators in "How to Get a Job." Of course, we are growing and taking part in more activities as we move forward. The initiative is very active and is the only one of its kind in Yemen. Still, the instability in my country has definitely made my work more difficult. Sometimes work would need to be stopped because of lack of medicine and security. There is also always a fear that I will wake up to the news that a patient had died because he did not get his medicine.

These things make my work more challenging but they have not stopped me from being confident enough to overcome challenges every day and continue to do what I do. My social entrepreneurship has taught me that that all successful work starts as a dream. Young people should look for the most important issues to them and help the society change for the best. For their part, leaders need to encourage volunteering initiatives by making decisions that help the initiatives work and help to raise awareness around the importance of volunteering. My dream for Life Pulse Initiative is to help all hemophilia patients in Yemen physically and psychologically for a better future. In doing this, I am helping myself, my family, and people who, like me, are in need of support and encouragement. Together, we can be each other's heroes.

This post is part of a series produced by The Huffington Post and Education For Employment (EFE), the leading youth employment nonprofit network in the Middle East and North Africa. 

Copyright ©2015 TheHuffingtonPost.com, Inc. "The Huffington Post" is a registered trademark of TheHuffingtonPost.com, Inc. All rights reserved.
 
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