Bleeding Disorders Awareness Month Is Almost Here!

With March being officially recognized as Bleeding Disorders Awareness Month, I’m excited to join my voice with millions of others to continue raising awareness for the causes so close to my heart. It’s the perfect time to come together and show the world what makes our community special…beyond just having bleeding conditions.

Continue reading to check out how Aptevo Therapeutics, the makers of the factor IX treatment IXINITY® [coagulation factor IX (recombinant)], are getting involved this coming month.

This is a paid public announcement from Aptevo Therapeutics 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.

 

 

 

 

 

 

 

Spread the word and Just B Heard

With a community of millions of Americans who are affected by bleeding disorders, including over 4,000 people living with hemophilia B, we have the power to make a big impact when we work together.

So this March, we’re showing our support for the hemophilia B community that we’re so proud to be a part of by encouraging everyone to lend their voices and help get the word out. Together, we can shine the spotlight on this rare factor IX deficiency and bleeding disorders overall, plus more importantly, the incredible people behind them.

Because you are a vital part of the bigger bleeding disorders community, and you deserve to Just B Heard.

Join us in the IXINITY Family Room on Facebook all month long to see how you can get involved, plus watch fellow community members share their stories at IXINITY.com.

IXINITY 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.

Aptevo BioTherapeutics LLC, Berwyn, PA 19312

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.

© 2018 Aptevo BioTherapeutics. All rights reserved. CM-FIX-0214

A Giant Falls

Barry Haarde and Laurie Kelley in Massachusetts
after his first cross-country ride
I was shaken to my core when I learned yesterday, while in Fiji preparing to do a full day hemophilia workshop, that my dear friend Barry Haarde had passed. It was surreal; how could this giant of a man–in stature, in compassion, in physical prowess, in notoriety, be gone? How?
He was so loved by so many. Hundreds of people around the world looked up to him and were inspired by him. I became a cyclist because of Barry, and rode the last 50 miles with him on his first cross-country tour, to benefit Save One Life. This became the first of his many endurance rides.

Over five years, through his “Wheels for the World” campaign, Barry racked up over 20,000 miles, criss-crossing the US five times, and generating over $250,000 for the charity I founded, Save One Life. Barry sponsored a child himself and was an avid supporter for the poor in developing countries. Barry was an endurance machine, despite having HIV, and a contracted joint.

My favorite photo of us: being silly as a
gangster and saloon girl

But life was the hardest endurance ride of all. Despite all he suffered and overcame, he passed all too young, at age 52. He and I shared many ideas, many hours talking about life, family, love, cycling, our community. We biked, hiked, spoke together, toured, attended galas and even skydived together (his first time!) on his 47th birthday. (True to Barry’s persona, it wasn’t just a skydive but had to be the highest tandem one in the world.) He loved lighthouses and jazz. Adored his mother and family. We were great friends and he was my hero, and one to our community. He has left a hole in the world. A giant has fallen. I pray we can carry the memories, the concern, the passion and compassion, the mission forward. 
Summiting Mt. Washington the day after
Barry completed a cross-country
cycling trip!
Barry was a very private person, and the essay below, in his own words, reveals his shy side, his sometimes solitary nature, his suffering. His ability then to galvanize our community the way he did was an act of bravery. Rest in peace, my dear friend, our dear Barry. You’ve left behind a very big footprint, a very deep tire tread. No one can ever replace you.
———————————————————————————
Someone once wisely observed that success and fulfillment in life was principally achieved by just showing up.  Never much of a people-person, I had generally avoided showing up at very much of anything over the course of my life.  Perhaps that was due in some measure to having been born with severe hemophilia A in 1965.  I had grown up in a rural area with no local hemophilia treatment center, no summer camps, and perhaps most notably, no factor concentrates.  Years of repeated knee hemorrhages had often resulted in days spent inside reading or studying music.  Limping my way through childhood often resulted in the inevitable teasing from other kids.  “If I cut you, will you bleed?” was a common refrain.  I learned to avoid situations where I would have to talk about my bleeding disorder and began to prefer my own company or the company of my family.
In 1985, AIDS entered our lives.  I was tested with my brother and brother-in-law as were thousands of other hemophiliacs.  After being advised that the risk of AIDS was “minimal,” we had continued using factor concentrates and each of us tested positive for what was then referred to as HTLV III, later renamed HIV.  Pat, my brother-in law, was gone by 1990.  AIDS was never mentioned at his funeral.  My brother, John, survived a paralyzing stroke in the same year as his HIV diagnosis. When hearing the news from the man in the white lab coat that “you’ll probably die within three years,” what does one do at the age of 19?  At a time when most are planning their careers and looking forward to marriage and a family, I found myself asking some very difficult questions.  What would I do with whatever time I had remaining?  Who would care about someone like me with a dreaded and lethal disease?  Did I even want to live in a world that sometimes treated AIDS victims by terminating them from their jobs, firebombing their homes and denying them medical care in hospitals?  
There were many questions and no answers. 
Like many others, I simply made the best of things and prayed that a cure would be found.  I pursued a career in music as a trombonist, which eventually led to some national tours with Broadway shows and the Tommy Dorsey Orchestra.  I had the opportunity to perform with Bob Hope, Perry Como, Rosemary Clooney and many others.  I eventually left the music business, as health insurance is a little hard to come by when playing the trombone for a living.  
At the age of 30, still surviving HIV and hepatitis C, I decided to settle down and get a day-job. Although society’s attitudes toward AIDS and those living with HIV began to slowly change over the years, I still found it very difficult to confide my medical history to anyone.  In a 25-year period of time I told no more than a dozen people about my HIV status. However, things changed dramatically for me in 2007.  My brother passed away.  He lived a courageous life until liver failure from hepatitis C took him from us in 2007.  Other than a friend in California, my brother was the only other person with hemophilia in my life. During the time that my brother was still in the hospital, I began Interferon treatment for hepatitis C.  I did not respond to my initial treatment attempt and for the second time in my life, doctors told me that without a liver transplant, I would not live much longer. 
Barry and Laurie at Rye’s Beach, New Hampshire after his first
cross-country ride
My experiences in 2007 resulted in many changes in my life.  I began to show up.  I resolved that whatever the outcome, I would not depart this world quietly…
Barry Haarde 
Haarde, B. (2010). Dedicated to Making a Difference. Matrix Health News5(4), 13-14. Retrieved from http://www.matrixhealthgroup.com/NFall2010.pdf

Puerto Rico Hoy

I’ve been so impressed with the efforts of Hemophilia Federation of America (HFA) to help our American community in Puerto Rico, that I wanted to provide their update on what’s happening with their relief efforts. We just made a donation, and I hope that you will too! People are still affected by the devastation of Hurricane Marie.

Disaster Relief
Efforts

 by Hemophilia Federation of America

Summary
of Assistance Provided

We remain in contact with families affected by natural
disasters. Requests from families in California, Texas, and Florida have
dwindled, but we continue to provide regular assistance to families in Puerto
Rico who are still coping with the aftermath of Hurricane Maria.
As of
January 31, 2018, Helping Hands (for “Together We Care”) has processed 80 applications for disaster relief. Total
relief funds distributed to date are $19,708.53.
Moving into February, there are 13 pending applications in the works with
needs identified at approximately $26,000 and others to follow up on.
Primary types of assistance distributed includes groceries,
batteries, clothing, toiletries, cash assistance for household bills, aqua tablets,
water, first aid items, cold packs, and other basic needs and rebuild supplies.

Together
We Care: Next Steps

The Helping Hands team and volunteers continue to support
requests for short-term immediate support and long-term needs such as home
repairs, furniture, etc.
Our team of social workers/counselors organized an extended outreach plan in late January 2018 to reach out to
families identified by the HTC that have not yet been served in our assistance
records. Cell phone service seems to be largely up and running now so the
current focus is via phone contact vs. home visits. Outreach includes an
assessment of short and long-term needs and evaluating if assistance should be
provided to the family.
With news reports of FEMA ending aid to Puerto Rico and
basic services still unavailable, recovery has been a slow journey for many
Puerto Ricans. January 31, 2018 new reports indicate over 500,000 households
are still without power on the island, particularly in rural and mountain
areas. We have met with community families as recently as the last few weeks who
still do not
have running water.
In our visits in recent weeks we have seen grocery stores,
gas stations, etc. largely be fully operational. While a great deal of cleanup
remains, roads are more and more accessible. 
The added challenge we see is that the months of shut-down resulted in
drastic increase of additional unemployment resulting in no opportunity for
income which only adds to the time it will take to get families back on their
feet.
Without question, the work of Together We Care is vital in continuing to support these families.
We can’t forget our Puerto Rican Americans with bleeding disorders once FEMA’s
aid ends.

Additional
Note from Kimberly Haugstad:

I had the opportunity to visit Puerto Rico in
January with Martha Boria Negron.  It
was a tremendous experience and an opportunity to see the hurricane impact
first hand as well as connect with some of our community in need. 
We traveled extensively through the island during our
stay.  Without a doubt, families are
still struggling and only slowing getting back to their normal.  We provided families with immediate
assistance and made follow-up plans for further support.
A few stories from many experiences are below. These families can’t
help but inspire our desire to do more, provide education and find ways to
connect the community on the island together, and to the US mainland.
Way up in the mountains we met Emanuel, a young
man with severe hemophilia. His home was destroyed in the storm and he and
his father were trapped inside for 2 days. He had a bleed after the hurricane
which necessitated a difficult trip to the ER in San Juan. They are in a
rented apartment now. He was just recently able to return to work.  Emanuel and his mom both expressed a wish
to learn more about different therapies and wished they had the chance to
meet other families living with bleeding disorders.
We met Devon whose mom works and his grandmother
takes care of him and his sister during the day.  Devon is 6 and very shy. His grandmother
knows he has severe hemophilia but not sure what type. We saw a clear
opportunity for family education here.
Carlos lives with his mom and grandmother. He is in
his late 20’s but as a teen, experienced a head bleed that resulted in
permanent complications. Carlos took us on a tour of his home and shared
where trees had come through his bedroom roof during the storm while he was lying
in bed. They have a partial repair but needed help to get it finished. His
mom was eager to connect and wishes to meet other families. She feels very
isolated right now. 
We met Elizer, a man in his 20’s with 3% FVII, a wife and baby boy.  After the storm he went to work for FEMA,
it paid more than his regular job. This resulted in his falling off a roof
and fracturing a vertebra. It took 8 hours in the ER to get factor. We met
him 6 days post-accident. In obvious pain, he hadn’t received factor since the
first ER dose.  No adult hematologist
had consulted, no plan for additional factor and surgery was under
discussion. 
Finally, I must commend the efforts of the pediatric
HTC in Puerto Rico. We spent an afternoon visiting and the HTC was very welcoming
of our efforts. We walked through an evaluation of our mutual lists of
families, identifying those who neither had yet heard from for future follow-up.
(They also promised to check on Elizer, they remembered him as a child at
their center.) The partnership and giving of time and heart was a gift. We are
thankful.

 

About Together We Care: Disaster
Relief Efforts

The bleeding disorders
community has a long history of rallying around our families in need. In 2017,
the US faced an unprecedented number of natural disasters. National bleeding
disorders organizations such as Hemophilia Federation of America, the National
Hemophilia Foundation, the Hemophilia Alliance, Hemophilia Alliance Foundation,
LA Kelley Communications, the national network of hemophilia treatment centers
and others have partnered to create the “Together We Care” disaster relief assistance fund.
Families helped have been gracious and thankful
for the caring and support.
DONATE: www.hemophiliafed.org

Dancing with Hemophilia: Janet Baldwin


By Richard Atwood

First published in PEN, November 2017

We repeatedly hear the message that regular exercise is beneficial for our health and well-being. Yet always heeding that advice over a lifetime can be a challenge. My suggestion? Include dancing as a fun component in your repertoire of exercises.

Exploring the world of dance, I became intrigued with Janet Baldwin, a hemophilia carrier. Janet made a lifelong career of dance in Canada, even performing at the 1936 Olympics. As part of her legacy, Janet inspired the award-winning Canadian author Timothy Findley to create a fictional character modeled on her life.

Catherine Janet Baldwin was born in 1912 in Toronto. Her family were descendants of the politician Robert Baldwin (1804-1858), who in 1841 brokered the coalition of Upper and Lower Canada—now known as Ontario and Quebec. This was an important step in the eventual formation of the provincial government of Canada. Something of a rebel in her wealthy family, Janet followed her passion for dancing to become a professional dancer,teacher, and choreographer. She studied ballet in Canada, America, and England. Janet went on to found her own ballet studio and to co-found the Canadian Dance Teachers Association. She was a member of the Royal Academy of Dancing.

A boost to Janet’s early dancing career was her 1936 marriage to Boris Volkoff (1900–1974), a ballet master who is sometimes called the father of Canadian ballet. Janet progressed from being Volkoff ’s student to being his wife and then his business partner in the Boris Volkoff School of Dance. Janet’s family did not approve of the marriage. The older, irascible Volkoff kept his Russian accent. He taught the more athletic style of ballet that he learned in Russia before defecting to Canada in 1929.

The couple’s personalities contrasted: Janet was known for her infectious energy, while Volkoff was considered flamboyant. Just a month into their marriage, the Volkoffs led a delegation of about 14 amateur Canadian dancers to the International Dance Competitions at the 11th Olympic Games in Berlin, 1936. The Germans wanted “art competitions,” including dance,
added to the Olympics, but the International Olympic Committee denied the request. Instead, the choreographer Rudolf von Laban organized dance celebrations before and during the athletic events. For political reasons, countries including America, England, France, Sweden, and Russia boycotted the dance competitions held in Nazi Germany; still, 14 countries participated. Because Olympic medals could not be awarded in dance, each participating dancer, including Janet, received a diploma. Volkoff, always a promoter who loved to exaggerate, maintained that of the six honorable mentions awarded, the Canadians were the only amateurs, while the other countries had professional dancers. Returning to Toronto, in 1938 Volkoff formed the Boris Volkoff Canadian Ballet, a nonprofessional ballet company, with Janet as his business partner. The couple also helped to organize the annual Ballet Festival, beginning in 1948, which brought together the existing Canadian ballet companies. Volkoff envisioned a touring professional company, but failed in his effort to be artistic director of the newly founded National Ballet Company of Canada in 1951.

Instead, the chosen director was Celia Franca, who promoted the British style of ballet, leaving Volkoff bitter and disillusioned.
The Volkoffs had a contentious marriage. A major issue was children. Volkoff wanted children, but Janet felt she shouldn’t have any because she was a hemophilia carrier. She feared that any male child with hemophilia would bleed to death. Janet had multiple abortions in Buffalo and Chicago under appalling conditions. After Volkoff had affairs with younger women, the childless couple divorced in 1951. Volkoff remarried, but when he was alone and dying in 1974, Janet remarried him without a license in a religious ceremony. Janet founded the Janet Baldwin School of Dance, and directed it for over 25 years. Late in life, she developed emphysema and, at the end, dementia. Janet died in 1990 in Toronto. Very little information is available about her family history of hemophilia, almost as if the family wanted to keep it secret. No other family member is identified as having the hemophilia gene, and Janet’s medical issues involving hemophilia are unknown.

Timothy Findley (1930–2002), author of The Butterfly Plague (1969), grew up in the prestigious Rosedale section of Toronto. He first met Janet Baldwin—notable for her white hair, blue eyes, and poise—when he was about seven years old. He remembered Janet dancing on the beach sand, or elegantly dressed at the Atlantic House Hotel in Maine where both their families vacationed every summer. Findley studied ballet, first from Volkoff and then from Janet, before a back injury ended his dancing career. He remembered the bruises caused by Volkoff ’s black walking stick, known as “Volkoff tattoos,” during his ballet lessons. Findley then turned to speech and drama classes so he could express himself as an actor before becoming a writer. The Butterfly Plague is set in Hollywood, 1938. Findley based his fictional character, Ruth Damarorsch, on Janet Baldwin—his friend,
teacher, and dance collaborator—even dedicating the novel to Janet. There are several similarities
between the real Janet and the fictional character: both are hemophilia carriers with white hair and
blue eyes. But there are also some differences, for example, in physical appearance and talents. Ruth wins three gold medals in swimming at the 1936 Berlin Olympics. She eventually has children in the   edition of the novel, but not in the 1986 rewritten edition.

Yet as hemophilia carriers, both Janet and the fictional Ruth felt they had “tainted blood.” Being a hemophilia carrier didn’t prevent Janet Baldwin from dancing her entire life. Sadly, based on the medical care available in the 1930s and 1940s, Janet feared that any of her children would die from hemophilia, so she did not car ry any pregnancies to term. Fortunately, today those medical concerns are allayed with appropriate treatment. I hope Janet’s story will inspire you to consider dancing as a form of exercise throughout your life. If you’re wondering whether I follow my own advice, let’s just say that I tend to dance in private.

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