Uncategorized

A Gala to Remember: PPTA Celebrates 20 Years!

Laurie Kelley June 24, 2012

I feel like I went to the high school senior prom I never got to go to in 1975. On Wednesday night the Plasma Protein Therapeutic Association (PPTA) celebrated 20 years of representing the plasma manufacturers worldwide. Dressed up for this black-tie event in Washington DC, I was able to mingle and meet with CEOs, senior executives, patient advocates and the wonderful staff of PPTA.

The Plasma Protein Therapeutics Association (PPTA) is the primary advocate for the world’s leading source plasma collectors and producers of plasma-based and recombinant biological therapeutics. The medicines produced by PPTA members are used in treating life-threatening diseases and serious medical conditions including bleeding disorders, immune system deficiencies, alpha-1 antitrypsin deficiency, burns and shock. As the global representative for the plasma collection and therapeutics industry, PPTA works cooperatively with patient groups, policymakers, regulatory agencies and other stakeholders.

I met with many good friends and colleagues in hemophilia: Art Wood and Jim Romano from PSI (you do know what PSI is, right?); Pete O’Malley of Baxter; Paolo Marcucci, CEO of Kedrion and colleague Federico Rolando; Patrick Robert of the Market Research Bureau and his lovely wife Clare; Chris Healey of Grifols; Shinj Wada, CEO, Biomat USA, Inc. and many others. Jan Bult, president and personal friend, gave a wonderful speech and then showed a 9-minute movie of the importance and history of plasma-derived therapies. (This film is available through PPTA if you want to order it; I highly recommend it). It’s staggering to realize all the people whose vision made these therapies a reality, and then to hear and see the actual patients whose lives have been improved because of them. I’m so locked into hemophilia, I lose perspective that there are millions who suffer rom immune disorders, for example—and face the same issues that we do: access to affordable therapies, health insurance, complications, employment.

Theresa Andrews sharing her Olympic medal with
Laurie Kelley

But the big surprise of the evening was an old friend. When Jan introduced the keynote speaker, Theresa Andrews, I thought, not her, not the wonderful hemophilia social worker I knew from University of Virginia who edited my books and articles many years ago, who wrote for us, who had positive attitude plus. Yes, it was she! But what would she speak about? She had “retired” years ago. Who knew she was a two-time Olympic gold medalist? Her story was amazing. Perseverance, team work, winning the gold by only a fraction of a second, and best of all, Theresa gave her first Olympic gold medal to her brother Dan in a private gathering, honoring him for his courage after he was paralyzed at the age of 19. This brother went on to be a judge, husband and father of several children, and Theresa, who has perseverance and great attitude, says Dan is her inspiration. I went to congratulate Theresa and we embraced like long lost friends—which we were! She let me wear the medal and we promised to stay in touch. Theresa just radiates good will and positive spirit, and together with her brother’s story makes you feel that anything is possible. I am quite partial to plasma therapies because while they play a vital role in countries like the US, they are essential to lesser-developed countries. Lower prices for plasma-derived factor means governments with small budgets can better afford them. And the PPTA team will continue to watchdog and monitor for safety. Congratulations to Jan, Albert, Charles, Julie, Josh, Diane, Dawn, their colleagues and all the supporters of PPTA. And thank you for a wonderful evening!

For more info: http://www.pptaglobal.org/

Wheels for the World!

Laurie Kelley June 18, 2012
Last year I summited Mt. Kilimanjaro to raise money for the nonprofit I founded, Save One Life. We’re starting to corner the market on “adventure fundraisers.”  This year? We conquer the
American highways with “Wheels for the World”!
On Monday, June 18, Barry Haarde, a 46-year-old Texan living successfully with hemophilia A,
HIV and hepatitis, from Texas, will start a 3,667 miles coast-to-coast bike ride from Astoria, Oregon to
Portsmouth, New Hampshire to raise funds for Save One Life. This is the first time someone with hemophilia will bike across America for charity!
Save One Life is a Massachusetts-based international nonprofit that provides direct financial aid to impoverished people with bleeding disorders in developing countries. Founded in 2001, Save One Life provides one-to-one sponsorships for almost 1,000 beneficiaries in ten countries. In addition, it provides funding for camps, scholarships for students and support for outreach to locate patients in rural areas. Barry is one of our dedicated sponsors.
Please help support Barry!
Pledge by the mile or by the state; make a one-time donation or sponsor a child—all proceeds go towards operations and programs to help Save One Life’s mission.  Thanks to Presenting Sponsor Baxter Healthcare International for helping to make this possible!

Home of Elvis… and the Ancient Greeks*: Pulse on the Road

Laurie Kelley June 10, 2012

 

Memphis Mayor A.C. Wharton

Pulse on the Road presented its program in the beautiful city of
Memphis. We were honored to be invited by the Tennessee Hemophilia and Bleeding
Disorder Foundation to their annual meeting, where over 300 family members
assembled to learn more about efforts to preserve hemophilia care. The meeting
opened on Saturday with a speech by Memphis Mayor A.C. Wharton, Jr., an
intelligent and charming gentleman, who pledged his support for the Foundation.
Mary Hord, executive director, then reviewed the incredible roster of programs
and activities provided by this successful and high-functioning NHF chapter. They
have over 1,000 families registered, something to be proud of in itself!

 
Laurie meets Rev. Shane Stanford

Then came a profound, humble, and at times very humorous recollection
of a personal and positive life. Speaker Rev. Shane Stanford is the pastor of a
church in Memphis, recently relocated from Florida, who has hemophilia and HIV.
I don’t want to give away his spectacular presentation, all done without a
single power point, but it is of a celebration of life over adversity. I don’t
think there was a dry eye in the room, although everyone kept saying they had allergies
or something, and a long line formed after his speech, so families could meet
this remarkable man in person. I had long wanted to meet him, based on a recommendation
of mutual friend Barry Haarde; mission accomplished, and we are all the richer
spiritually for having met Shane.

 
This morning we held Pulse on the Road after breakfast. Not easy to
digest (insurance that is), our material was absorbed and contemplated by a
rapt audience. We covered the ACA and what’s happening in Tennessee. Michelle
Rice presented the NHF Insurance Selector Tool (you can download it at www.hemophilia.org, which I highly
recommend) and everyone got busy comparing two hypothetical insurance plans to
see which one was better. Many participants praised the tool as essential in
learning to master personal insurance.
 
Michelle Rice, NHF, speaks as Kelly Fitzgerald, PSI, looks on

Kelly Fitzgerald covered the Affordable Care Act (ACA) and what to
watch out for coming in 2014. Then we held our Community Forum, in which audience
members could ask questions of our panel of experts, which included Catherine
Joyce, social worker at a local HTC.

 
It was a great weekend, with a fantastic foundation and its attentive
and friendly hemophilia family members. Thank you, Mary Hord and team, for a memorable
visit!
 
 
Social Worker Catherine Joyce answers a question
Using NHF’s Insurance Selector Tool

 

 

We do POTR for their future!
Laurie & Zoraida, LA Kelley Communications

 

The POTR Speakers

 

* “Once in a Lifetime” Talking Heads

 

Walk the [Blood] Line

Laurie Kelley June 4, 2012
It was a rainy weekend in Boston, and I was so sad I couldn’t join the Hemophilia Walk in Boston yesterday. But, I’m happy to say that New England Hemophilia Association surpassed their goal of $100,000! And this all happened in a downpour!

There are more walks happening all across the country to help raise money for hemophilia, for the local organizations who help us in our own states, for the National Hemophilia Foundation that lobbies for us and provides research, and even Save One Life, the nonprofit I founded, may benefit!

If you want to help kids with hemophilia, especially those suffering in poverty overseas, here’s how!

Bayer is sponsoring “Virtual Walks” throughout the year, from the comfort of your own home, and Save One Life, which now sponsors over 1,000 children and young adults with hemophilia in developing countries, may benefit directly from it!

Bayer is proud to announce the 2nd Annual Bayer Virtual Walk for Hemophilia! Committed to helping support those who live with bleeding disorders, Bayer, through the Virtual Walk, is offering sponsorship funds to the National Hemophilia Foundation* (NHF), its local participating chapters, and to Save One Life (www.saveonelife.net). This year, the top 5 participating local NHF chapters with the most virtual walkers will receive sponsorship funds, as follows:

First Place: $15,000 Second Place: $10,000 Third Place: $5,000 Fourth Place: $2,500

Bayer will also award up to $30,000 to the National Office of the NHF in New York City, and up to $7,000 to Save One Life.

If your local chapter is not one of the participating chapters in this year’s Virtual Walk, you can still be involved! Just choose to walk for the National Office of the NHF. You can then share your virtual walker on Facebook and invite everyone you know.

Together we will help raise awareness for bleeding disorders across the country!
(My two cents: And help directly those suffering in countries where no factor is available)
Great Book I Just Read

The Invisible Man by H.G. Wells
A crazed, young scientist named Griffin has discovered the means to make himself invisible. With the power that
comes from not being detected (or so he thinks) he unleashes a reign of terror in England. He begins to torment unsuspecting people, stealing, ransacking, sometimes in a sadistic way. This is a very dark novel, extremely well written of course—it is by the Master and Founder of Science Fiction himself. Griffin eventually tracks down colleague Kemp, shares his plans to dominate the world, and his malicious joy terrifies Kemp.
First published in 1897, The Invisible Man retains its thrilling plot, pace and characters even now. It’s not as good as War of the Worlds or The Time Machine, but it’s short enough to be read in a single sitting, is stimulating, entertaining and sharp. The science behind how he becomes invisible is great! The pace of the book pick up at the end to a great climax. Four/five stars.

Memorial Day with a Memoir

Laurie Kelley May 28, 2012

I often think of Memorial Day as a time not only to think of those who died serving our country, but of those veterans from the hemophilia community, who died from HIV, or who are still fighting the good fight, so that our sons could live. Their infections and/or deaths expedited the call to identify the virus that stalked the blood supply, and to find treatment fast.

Bob Massie is one of those. And he’s written about his experiences in a new autobiography called A Song in the Night: A Memoir of Resilience (Doubleday, 287 pages, $24). I urge you to buy it and read it. It’s the newest book in the hemophilia marketplace, and it is a gem.

You may know of Bob from one of several places; he’s a rolling stone, despite his health issues. Episcopal priest, author, researcher, politician, human-rights activist, father of three, nonprofit leader. You may recognize him as one of the people profiled in 2010’s documentary Bad Blood. You also may have met him first like I did, through his parents’ book Journey, from 1973. Journey was truly the first book about hemophilia, told in alternating chapters from the parents, Pulitzer-Prize winner Robert K. Massie and then-wife Suzanne Massie. This stunning book put hemophilia on the map, and revealed painstakingly what it was like in the 1960s and 70s to raise a child with this rare genetic blood disorder.

Bob now shares his own perspective on his life and also continues where Journey left off. Without a shred of self-pity, he shares the searing pain that left him crippled as a child; the loneliness of being left behind and unable to participate in school or playground activities like the other boys. Not surprisingly, but admirably, he turned his suffering into something greater, something that would eventually benefit many. Bob became a crusader against social injustice in its many forms (his influences reached South Africa at one time) and despite his physical limitations, he achieved more than an average person would, without any limitations. His list of accomplishments is stunning, leaving the reader feeling a bit inadequate: if a person who spent years ill in bed could do all this, what’s our excuse?

Bob has excelled in many areas and following a successful lived transplant two years ago, is going stronger than ever as president of a nonprofit, following a year of campaigning for US Senate. Despite spending years in a drug-induced wait for a new liver, watching life pass him by, he is back, strong and focused, and continuing still to make a difference. A Song in the Night is less a memoir of what life did to him, but rather how he has made a life despite so many hardships and setbacks. Bob references his faith often, which has been unshakable and contributed to his desire to overcome his illnesses and in turn, help others.

Like our war veterans, Bob Massie has served on the front lines, earned his battle scars, works to make the world safer and better, and above all, is inspiring. He inspires us, I think, to see the challenges we face, however hard, as perhaps a calling from Above, a way to persevere and then to serve our fellow humans, with love. In one passage of the book, Bob describes his ordination as a deacon. The bishop looked him straight in the eye and told him his responsibility, his mission, was “to serve all people, particularly the
poor, the weak, the sick, and the lonely.” Bob has accomplished all this, and more.

This is a well-written book, full of history, personal narrative and profound inspiration. We should be proud of Bob Massie in our hemophilia community; he has overcome, with his unconquerable soul.

HemaBlog Archives
Categories