NHF

NHF’s 71st Bleeding Disorder Conference

I just returned from Anaheim, California, where the 71st bleeding disorder conference was held. From Thursday till Saturday night, this unique community gathered to share stories, learn from one another, hear experts speak on a variety of subjects. I’ve been attending since 1992, and I think I’ve only missed one, in a year when I gave birth to my third child. This year, however, was quite special. It marks the end of an era: NHF CEO Val Bias is stepping down as leader.

I always feel funny using the term CEO with Val, because he is more than just that title to this community. He has been a friend, camp counselor, mentor and activist. He always has a ready smile, and a demeanor that makes you feel he has all the time in the world to chat with you.

Wayne Cook congratulates Val Bias

I didn’t always perceive him that way. I first saw Val when in 1992 I attended my first NHF annual meeting in Atlanta. This was at the height of tensions between the consumer advocacy groups and pharmaceutical companies, during the HIV crisis. One group of activists even dressed as grim reapers, poured red paint on themselves to represent spilled blood, and walked among the booths at the exhibit hall, banging a drum. It was chilling, and everyone was on edge. Many pharma reps left, especially after they had received death threats. The exhibit hall became deserted.

Kim Phelan, executive director of the Coalition for Hemophilia B congratulates Val Bias

I attended one session, a town hall, where people could speak up and bring their complaints and air their views. At the head of the room was a podium and table, at which sat representatives from our community: Bill Sparrow, Rachel Warner, and a few others whose names I can’t recall. In the front row, an angry Michael Rosenberg, who had hemophilia and HIV, and who headed an advocacy group that was seeking justice for the HIV infection of factor. I didn’t know all the issues at that time but watched as Michael eventually was on his feet, yelling at the speakers on the podium, and the room erupted! The community was angry, hurt… poisoned. Children and adults had died. The tension was incredible.

Out of this pandemonium came a voice from the podium asking everyone to calm down and to sit down. It commanded the room, and everyone listened. People stopped shouting; people sat down. I was amazed and wondered, who is this guy, who can bring order to chaos and calm people with a commanding voice and apparently, reputation?

That was my very first impression of Val, a leader in a time of crisis. He has played many roles in our community, including helping to bring the Ricky Ray bill into law, which provided compensation to those with hemophilia who were infected with HIV and hepatitis C. He’s been a fighter on the front line for blood safety, and more recently, a fighter to keep access to all therapies in the face of insurance barriers.

Laurie Kelley with Val Bias

The opening night of NHF last week was a tribute to Val. A beautiful video, with testimonies from former NHF president Mark Skinner and current NHF COO Dawn Rotellini, shared his contributions for the past 11 years as CEO and his contributions to the community overall. It’s a life well lived. It always struck me that while Val too was infected with HIV and hepatitis C (his first wife died shortly after being infected by him), Val never seemed to harbor bitterness. He only sought justice.

We will miss his leadership. But we hope that he will stay visible in the community, to share his warm smile, hearty laugh, wisdom and friendship. He leaves a legacy, and very hard shoes to fill.

An IXperience that’s anything but ordinary

The hemophilia community has always taken care of its own, and I’m happy to help support the efforts of Aptevo, makers of the factor IX treatment IXINITY® [coagulation factor IX (recombinant)] to continue this tradition as part of the IXINITY IXperience. Read on to learn more about the FACTOR IT FORWARDTM program and how you can help give back to the factor IX community by signing the 9!

 

This is a paid public announcement from Aptevo and does not constitute an endorsement of products or services. When you click on the links in this blog entry, you will be directed to the IXINITY website. LA Kelley Communications always advises you to be a savvy consumer when contacting any company; do not reveal identifying information against your will.

FACTOR IT FORWARD

As part of the IXINITY experience, every IXINITY patient has the opportunity to give back to the US factor IX community just by choosing to infuse. When your healthcare professional enrolls in the program, for every 10 IU of IXINITY distributed, 1 IU is donated to factor IX families in need across the United States. That means a nine who infuses 4000 IU twice a week helps FACTOR IT FORWARD donate more than 40,000 units a year to US factor IX families in need!

Learn more at IXINITY.com

Sign the 9

Sign the 9 is another way you can help give back to your community. When you Sign the 9, every signature received will make 9 IU available for donation to people in need across the United States as part of the FACTOR IT FORWARD program for IXINITY.

Already this year, almost 1,000 people have signed the 9! It’s another step we’re all taking to make sure we leave no nine behind. Connect with your local rep, or if you plan to attend the National Hemophilia Foundation Bleeding Disorders Conference in Anaheim, CA on October 3-5, be sure to stop by and Sign the 9!

LIVE LIFE YOUR WAY WITH IXINITY 

Predictable bleed control for your unpredictable life
  • In a clinical trial, 71% of bleeding episodes were resolved with 1 infusion and 13% were resolved with 2 infusions.1 Individual response may vary
Higher recovery means more factor on board after infusion
  • IXINITY has an average incremental recovery of 98%1
Flexibility to plan peak factor levels for your everyday, active lifestyle
  • 24-hour half-life for peak factor IX levels when you need them1
See why switching to IXINITY may be right for you

INDICATIONS AND IMPORTANT SAFETY INFORMATION

What is IXINITY®?

IXINITY [coagulation factor IX (recombinant)] is a medicine used to replace clotting factor (factor IX) that is missing in adults and children at least 12 years of age with hemophilia B. Hemophilia B is also called congenital factor IX deficiency or Christmas disease. Hemophilia B is an inherited bleeding disorder that prevents clotting. Your healthcare provider may give you IXINITY to control and prevent bleeding episodes or when you have surgery.

IXINITY is not indicated for induction of immune tolerance in patients with hemophilia B.

IMPORTANT SAFETY INFORMATION FOR IXINITY

  • You should not use IXINITY if you are allergic to hamsters or any ingredients in IXINITY.
  • You should tell your healthcare provider if you have or have had medical problems, take any medicines, including prescription and non-prescription medicines, such as over-the-counter medicines, supplements, or herbal remedies, have any allergies, including allergies to hamsters, are nursing, are pregnant or planning to become pregnant, or have been told that you have inhibitors to factor IX.
  • You can experience an allergic reaction to IXINITY. Contact your healthcare provider or get emergency treatment right away if you develop a rash or hives, itching, tightness of the throat, chest pain, or tightness, difficulty breathing, lightheadedness, dizziness, nausea, or fainting.
  • Your body may form inhibitors to IXINITY. An inhibitor is part of the body’s defense system. If you develop inhibitors, it may prevent IXINITY from working properly. Consult with your healthcare provider to make sure you are carefully monitored with blood tests for development of inhibitors to IXINITY.
  • If you have risk factors for developing blood clots, the use of IXINITY may increase the risk of abnormal blood clots.
  • Call your healthcare provider right away about any side effects that bother you or do not go away, or if your bleeding does not stop after taking IXINITY.
  • The most common side effect that was reported with IXINITY during clinical trials was headache.
  • These are not all the side effects possible with IXINITY. You can ask your healthcare provider for information that is written for healthcare professionals.
 For more information about IXINITY, please see full Prescribing Information, including Important Patient Information.
 
You are encouraged to report side effects of prescription drugs to the Food and Drug Administration. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.

Reference: 1. IXINITY [coagulation factor IX (recombinant)] prescribing information. Seattle, WA: Aptevo BioTherapeutics LLC; December 2018.

Aptevo BioTherapeutics LLC, Seattle, WA 98121

IXINITY® [coagulation factor IX (recombinant)] and any and all Aptevo BioTherapeutics LLC brand, product, service and feature names, logos, and slogans are trademarks or registered trademarks of Aptevo BioTherapeutics LLC in the United States and/or other countries.

©2019 Aptevo BioTherapeutics LLC.               All rights reserved.          CM-FIX-0327

Origins: Save One Life

The air was crisp with the coming of Fall when we visited New York City this past Thursday night to attend NHF’s Annual Soirée, a fundraiser that honors various members and organizations in the bleeding disorder community. I have attended once before, a few years ago. It’s a lovely night and chance to get caught up with colleagues and friends, while being dressed to the nines. This night, the nonprofit organization I founded, Save One Life, was to be honored. We were receiving the “Global Impact Award.”

Chris Bombardier giving acceptance speech

Along with Save One Life, Alex Borstein, television actress and community member, David Quinn, head coach for the NY Rangers and the World Federation of Hemophilia were also being honored for the Inspiration Award, Ambassador Award, and Global Leadership Award, respectively. Congratulations to all who were honored!

Chris Bombardier, Save One Life’s executive director (and famous mountaineer with hemophilia) and I took the stage to accept the award, while several of our board members looked on. With us were: board member Ujjwal Bhattarai, chair, who helped us found Save One Life, and his wife Sunita, who have a child with hemophilia; new board member Natalie Lynch, and husband Patrick (actor and film director, president of Believe Ltd., who has hemophilia), and board member Kayla Klein, mother of a child with hemophilia who works at Sigilon.

Val Bias, CEO NHF, Chris Bombardier and Laurie Kelley of Save One Life,
Dawn Rotellini, COO NHF

While looking at them from the stage and into the bright lights of the future, I recalled our very humble roots. I spoke to the audience about how Ujjwal and I have worked for 18 years to make Save One Life truly have impact among the world’s poor. It has been a long, difficult and challenging road, but with the greatest of rewards: to help those without access to factor have access; to help those who live on the edge have security; to let those with an uncertain future know they have an organization to count on. After 18 years we have now seen so many of our children in school, graduating, have jobs and even have families of their own.

We had to give credit to Chris, and his daring Seven Summits Quest, which helped raise awareness of Save One Life to the global community. And more than that, the documentary “Bombardier Blood,” directed by Patrick Lynch of Believe Ltd and now produced by Alex Borstein, has catapulted us into the spotlight. We never sought recognition or fame for the work we consider a personal and compelling mission—for me, based on my faith—but the movie has done more for us than just about anything we have done ourselves. We could not thank Chris or Patrick enough for their efforts. Their sacrifices and dedication have been huge. And kudos and gratitude to Octapharma, which funded the last two mega-climbs, and for funding the entire movie.

But absent that evening was a key person, perhaps without whom known of this would have come to pass.

Laurie Kelley with Lisa O'Connor, who created the idea
of Save One Life in 1999

Twenty years ago, a mom from Cold Springs Harbor, New York, not far from where the event took place, sent me a letter. She has a son with hemophilia, only a few years younger than mine, and read my books and newsletter. In 1999, we used to write letters to one another! Hers came on one sheet of yellow lined paper, and on it, she wondered if there was a way to help children with bleeding disorders in developing countries, like Save the Children. I happened to have sponsored two children with Save the Children, one in Lebanon and one in Mali. Not long after she sent her letter, I made my first trip to Pakistan, a country I have grown to love. There, on the Arabian Sea, in a humble, two room dwelling in a very poor area, I sat on a bed with a baby in my lap, listening to a father with a fretful expression speak about his two young sons with hemophilia. He was very poor, only earning about $20 US a month. He wished for an extra $20 a month, to send his oldest boy, Mohammad Ali, to school. With this education, his son could get a good job, once he learned English. I thought this would be an easy fix. And if we could do this for this Pakistani child, why not do it for others? Americans are among the most generous people on earth, and I knew if we appealed to them to help children with hemophilia who were poor and without factor, we could help change lives.

It was Lisa’s letter that kept drawing me back. Could we create a program like Save the Children?  The answer was yes. Yes. Anything is possible!

Now, 18 years later, here we are. Over 2,000 children sponsored. Over $3 million in direct aid. Over 270 college scholarships. Over 80 microenterprise grants. Over 30 camp grants. 13 developing countries. And more to come… .

(See www.saveonelife.net for a short video of Save One Life's accomplishments so far)

Save One Life board members Ujjwal Bhattarai and Natalie Lynch, with spouses Sunita and Patrick

As it happened, I was going to Huntington, New York after the event to catch a Doors tribute band show at the Paramount Theater. Something rang a bell… I checked my database and saw that Lisa lived right near Huntington. A few texts later and we agreed to meet!

This morning Lisa walked into the Sweet Hollow Diner, and we sat together for breakfast, while I shared all the profound and life-changing programs and stories that have happened over the past 18 years.  She was amazed; with her son grown and gone, she had kind of lost touch with the bleeding disorder community.

I believe in honoring those who make a difference. Save One Life was not my idea; it was Lisa’s. Lisa cast a small stone into a pond, and the ripple effect continues after 18 years, and hopefully will continue for decades to come. Her idea was a catalyst, and so many have benefited from it. Let’s honor Lisa, as well as those Thursday night. It was her vision that gave birth to Save One Life.

Visit https://lakelley.smugmug.com/Events/Galas/NHF-2019-Soiree-Honoring-Save-One-Life/ to see photos of the event!

We need to give ourselves permission to act out our dreams and visions, not look for more sensations, more phenomena, but live our strongest dreams— even if it takes a lifetime. Vijali Hamilton

United by Blood

Madonna Smith, executive director of Oregon Chapter, adopted a child with hemophilia into our "family"
Well I’m ready for a rest! Last week I was in Orlando at NHF’s 70th annual meeting, and last night, at the New England Hemophilia Association’s Red Tie Soiree in Worcester, Massachusetts. And while there is so much happening with new products, with gene therapy coming closer, new programs for our community, and the spectacular movie Bombardier Blood ready for viewing nationwide, the overriding feeling I have after these major events is… this is family. We are truly a family, united by blood.
With the California gang!
As I’ve been in the community for over 30 years now, I’ve come to know so many people, and have watched as babies have grown to young adults, starting families of their own, some also with bleeding disorders. Our family grows, and grows older! My friends and I, all young moms and dads when we came into this family, are now in our 60s, looking back at the incredible path this bleeding disorder family has traveled together. One path literally is the one that led to the movie Bombardier Blood, which debuted last Saturday in Orlando. To a standing room only crowd of over 500 people at 7:15 am, the Octapharma-sponsored event and movie about Chris Bombardier’s epic Everest summit brought laughter and tears to all. It is a stunning film, directed by Patrick James Lynch—whose name you all should know as well as Chris’s by now! These two young men with hemophilia have skyrocketed to fame with their achievement. It makes us, the older moms and dads, incredibly proud. We all kind of feel like they are “our” sons, or like our sons. Sons of our community, doing daring things for our community.  Go Here to See Photos from NHF's 70th Annual Meeting! I was honored and fortunate to travel the actual path to Everest base camp with Chris and his wife Jess, and share in part of that historic journey. All the while, I felt like the mother I am, watching out over both of them (as if Chris needed it!). Viewing the movie that morning brought back so many memories and feelings of that journey in May 2017. So much of the NHF meeting was connecting, with old friends and new, with families in need and families who can share and give. And at the final night we listened to music and danced the night away. While blood unites us as family, music unites us in joy. I wish everyone could attend NHF’s or HFA’s annual meeting, though I know it’s improbable for most. The meetings are often held in the same spots: Dallas, Chicago,
Laurie Kelley with Derek Nelson, everyone's favorite
Anaheim, Orlando, San Diego. You’ll never see one in Boston—too expensive. Not everyone can afford to go away by air and stay at hotels. While there are scholarships for first-time families, it sadly still leaves many in our family on the fringe.
Laurie Kelley with Kevin Shaughnessy, who she met when he was 12!
And that’s why we have local chapters and state bleeding disorder organizations. Does your state or region have one? The New England Hemophilia Association has become one of the best run organizations in the US. It wasn’t always that way. As we heard last night, when Charlie Dougherty, who served as treasurer and who passed away earlier this year, found when he joined, it was poorly run and $22,000 in the red. He straightened it up, but it took Rich Pezzillo, a young man with hemophilia, to rocket it into the highest level, and not just by squaring away financials. Rich has breathed new life into NEHA, infusing it with passion and commitment like never before. I confess I never donated to NEHA, even though I’ve lived in New England all my life. But with Rich’s leadership and his crackerjack team, we are all excited to give and participate once again. Last night proved it. I sponsored three tables and invited the team at Save One Life to come and experience the joy of this family reunion, and they had a blast, amazed by the comradery and caring. In many ways, I find I can enjoy our bleeding disorder family simply by being local. So there’s hope for you too, to join this family by seeking out your local organization. Is it active? Does it have programs? NEHA has programs every month, sometimes every weekend! Does your chapter do a fundraising walk? Have a women’s or teen program? Is there someone to call to learn how to get involved? I would really urge you to do everything you can to participate. Bleeding disorders can throw a curve ball at you at any time, as life can too. This family, this “Wicked Strong Family” as we say in Boston, is here to help. These friends have become more than friends—they are truly family. And when I attended the wake last Friday of my first cousin’s husband, who died unexpectedly at only age 61, you realize how family is always family, no matter what. I visited with my cousins, who I rarely see anymore, except on Facebook. We were playmates as children, but life gets busy, the family gets bigger and reunions consist mostly of funerals now. Still, we have history and we are united by blood. It was good to see everyone again; I still love them all. See Photos from NHF's 70th Annual Meeting here!
Rising star: Rich Pezzillo with Laurie Kelley
We’ve lost a lot of people in this community this year and as life goes on will continue to lose more. It’s at this time that family comes together: whether nationally, or locally. Find out more about your local chapter; meet your hemophilia/bleeding disorder family. Get involved; give of your time or support. We are all united by blood, and can create the family we need by connecting, caring, sharing and loving. And a little celebrating and dancing doesn’t hurt either!
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