September 2012

Wine, Friends, a Foundation, A Legacy

I don’t often attend hemophilia functions in my own home territory because I am usually
traveling elsewhere for hemophilia. How nice it was to attend a wine tasting
event in Connecticut to benefit the Colburn-Keenan Foundation. This was all the
more special to me, because I knew the founders, Donald Colburn and Kathy
Keenan, who lived in my hometown of Springfield, Massachusetts. Many of us who
have been in the hemophilia community 10 years or more will remember Donald as
the man who donated half a million dollars to kick off NHF’s Campaign for the
I drove almost
three hours to a lovely vineyard at Rosedale Farms and Vineyards in Simsbury, Connecticut. It was a perfect fall day for the event, and I was greeted by long time friends and colleagues Mark Zatyrka, who is Donald’s nephew, and his wife,
Sasha, who is executive director of the foundation now. Mark also has
Laurie with brother Tim and sister-in-law Leslie
There were many old friends in attendance, and I convinced my brother Tim and sister-in-law Lee
to drive down from Springfield to join us. The Connecticut Hemophilia
Association staff was present, as were many local homecare and pharmaceutical
company reps, which helped support the event. There were many great wines to
try, wonderful hors d’oeuvres, cheese and fruit, and raffle prizes.
Laurie with hemophilia friends Jane and Chris Smith

But the best part of these events is hearing from the families who benefit. I work internationally, with impoverished families (and I mean like $1 a day income impoverished families), and sometimes it’s easy to dismiss or even forget that
there are families really hurting now in America. Jennifer, a mom from Connecticut, stood up and gave a wonderful testimony about how the Colburn-Keenan Foundation helped her family when they had tough times; her son now is thriving thanks to their financial support. I also want to thank the Foundation for making a donation to my own nonprofit, Save One Life, which
helped us meet our operating expenses.

And it’s really a great legacy from a great man and woman, a team, who devoted their lives to making a difference: and they are still making a difference even though they have both passed on. Read below to learn about the unique couple whose lives
were all about giving. And visit  to learn more about the Foundation.
Thanks to Mark, Sasha, and everyone for a wonderful evening!
From the website
Donald E. Colburn, founder of the Colburn-Keenan Foundation,
Inc. was raised in Agawam and was a longtime resident of Springfield,
Massachusetts and Suffield, Connecticut. Donald’s life was one of outstanding
community service.
Donald was a past president, volunteer, and
supporter of the Kiwanis International Club of Greater Springfield and the
Cape. He supported the United Way of the Pioneer Valley, the Jimmy Fund,
Special Olympics, many of the first AIDS service organizations, including
Project Inform, AIDS Action, Camp Heartland, Camp Hole-in-the-Wall Gang, and
the Elizabeth Glasser Pediatric AIDS Foundation.
Donald also lived with severe hemophilia A
and many of its complications and, as a consequence, was committed to the
creation of a better world for individuals and families living with bleeding
disorders. Donald’s volunteer leadership activities spanned 35 years,  and included his years as Executive
Director of the New England Hemophilia Association (NEHA). His national
volunteer work included participation in the Federal Maternal and Child Health
Bureau’s Hemophilia Treatment Center grant review program; the Centers for
Disease Control’s Care Standards Committee and its Hemophilia/HIV Treatment
Center Compliance Site Visit program; and the National Hemophilia Foundation’s
(NHF’s) Blood Products Monitoring Committee, Blood Safety Committee, MANN
Committee, Advocacy Committee, Strategic Planning Committee, and It’s Time for
a Cure committee. He was a supporter of the Committee of Ten Thousand and
Hemophilia Foundation of America.
Kathy Ann Keenan, founder of the Colburn-Keenan Foundation,
Inc. was born in Queens, New York and was raised in Springfield, Massachusetts.
Kathy Ann’s life was one of caring and giving. She was a generous benefactor to
many worthy projects and charities in the local community as well as several
regional and national organizations. These included the New England Hemophilia
Association, the National Hemophilia Foundation, the Entertainment Industry
Foundation’s National Colorectal Research Alliance, the Elizabeth Glasser
Pediatric AIDS Foundation, and Project Inform, to name a few.
In 1982 Donald Colburn and Kathy Ann Keenan
married and began a life together of hard work and personal and corporate
responsibility. In 1989, they founded AHF, Inc., a homecare pharmacy.
Donald and Kathy Ann founded the
Colburn-Keenan Foundation as a means to perpetuate their hopes for and service
to the bleeding disorders community. The Foundation represents their life-long
commitment to supporting the emergency, medical, and educational needs of those
with bleeding and other chronic disorders. In addition, the Foundation supports
the work of community, regional, and national organizations involved in
projects and programs that benefit the bleeding disorders and chronic illness

20/20 Vision in Puerto Rico

“The only true voyage of discovery consists not in seeking new landscapes, but in having new eyes”  Marcel Proust

Vision is perhaps the single most important possession of leaders, especially those who seek to change and improve the future of its people. Saturday was a day of discovery in Puerto Rico for the hemophilia community as the Asociación Puertoriqueña de Hemofilia (APH) met as a team to work on fundamentals of leadership, such as vision.
I was honored to be the facilitator for such a day. I have a workshop called “Reach the Summit,” which I have given in other countries to help jumpstart hemophilia nonprofits in their bid to change hemophilia healthcare in their countries. It’s normally a three-day workshop, and that’s just one workshop! It could easily be two to three workshops, too. But we had just one day for now.

My visit in April was to assess  hemophilia care in Puerto Rico, our “51st” state, and to see if there were ways we can help. The Hispanic community in the States is our largest minority population, and cities like Boston, where I am, have a huge Puerto Rican (and Dominican) population. Puerto Rico is never far from my mind. I followed up my April trip by writing a feature article in PEN (see our Archives to download!), which outlined the task head of APH to improve care. What naturally came from that was the idea of a workshop to jumpstart the new direction of APH.

Laurie presents leadership principles
But you can’t go in a new direction if you don’t know where you are going, and you can’t know where you are going unless you have a vision of where. I compare this process to mountain
climbing, which I have now actually done in climbing Mt. Kilimanjaro last  August.
You need to know what your purpose is, your summit, where you will end up. You
need a map (strategy), proper gear (resources), a compass (values), a
contingency plan (flexibility), fellow-mountain climbers and porters (team),
and a mountain guide (coach).
Our team attending that day consisted of parents and patients with hemophilia who have been running the APH, and representatives from industry, including Novo Nordisk, Baxter and
Bayer, and a local specialty pharmacy, Axium.
The day started by examining limiting beliefs, because leadership requires that we break through these to
begin our climb. I recalled my limiting beliefs before climbing Kili: I’m too old, I’m not in good shape. We did some fun exercises that demonstrated how we are all shaped by childhood and our daily routine to think a certain way. We
may need to break out of the “box” to find solutions to hemophilia care in PR.
Johnny Márques and Jésus (Novo Nordisk) examine goals
Next, we discussed principles of leadership and each person in the room shared who his or her leadership model: who is the one person from history or even currently, personally, professionally or spiritually, who we look up to as a leaders, and why?
Then, we tackled principles of vision, but only briefly. This was a shame, because almost all leadership workshops start with creating a vision. From the vision, all things flow. There
just wasn’t time as we wanted to end the day with concrete goals. So we then
moved on to mission statement, which the APH already had. But it wasn’t a clear
one. We spent an hour taking it apart, examining it, challenging it and finally
the group reassembled, and put it back together, with half the words and five
times the power!
We worked through lunch on goals under five headings: organizational (including board development); medical; communication; lobbying; and patient programs. The goals were easy! We all knew what needed to be done. What was fun about this? Seeing how one goal couldn’t
be reached unless another goal was first accomplished. The group naturally prioritized
their goal. Goal #1? Get a phone number for the association! #2? Get business
cards for NHF’s meeting in Orlando in November!
Tamara writes the new vision statement
The group was so excited about the new mission that they wanted very much to return to vision. This means we had to scrap the strategy session. But momentum was high and momentum is the fuel, the passion for change! I couldn’t let that go. Three participants had already come to me quietly and individually and said, “I know what the vision should be.” That’s the kind of leaders we look for.
So we spent the last session retuning to vision, and wow, did creative sparks fly! I never saw a group pull together a vision so quickly, so coherently, so beautifully. Three people offered vision statements, and they were all quite similar. With a little reworking, shaping,molding, the APH had a new vision. This vision would serve as a beacon, to guide them through the coming years as they navigate rocks, hills, bad weather
on their way to the healthcare summit.

I was very proud to serve these remarkable and dedicated people. I hope we are paving the way for the APH to soon join NHF as a chapter, and start opening the doors of communication to a stronger community and better medical care on the island. Care there is very good, but there is lots of room for improvement. And together as a team, the APH will serve as effective advocates—in turn, “mountain guides”— for all Puerto
Rican patients with bleeding disorders.
Thanks to all who attended, and especially
to Baxter Healthcare which sponsored the room and refreshments.

Una comunidad de personas con hemofilia y profesionales de la salud abogando en pos de sus derechos a un mejor cuidado médico de exelencia.
A community of people with hemophilia and healthcare professionals advocating in pursuit of their rights for an excellent medical care.

Read more

Hemophilia and the Amish: A Novel based on Facts

Hard to imagine, but with health care reform dominating the elections, there are pockets of Americans who choose not to have coverage, and instead rely on out-of-pocket costs: the Amish are one such group.
And while a novel, the book The Choice (2010) by Suzanne Woods Fisher, depicts life with hemophilia in mostly accurate terms in the Amish community. The following was submitted by our wonderful PEN contributing writer, Richard Atwood, of North Carolina.
Weaver, a blond-haired, blue-eyed Amish girl in Lancaster County, Pennsylvania, moves to Stoney Ridge at the age of 12 when her father, Jacob Weaver, who has hemophilia, remarries. Her mother died giving birth to Carrie’s younger brother, Andy. Over two years, Carrie has to suddenly grow up and make adult decisions that test her faith. Solomon Riehl, or Sol, who was born and raised Amish, receives a one-year contract to pitch baseball for the Lancaster Barnstormers. Sol asks Carrie to marry him outside the community. Sol enjoys his running-around years, the Rumspringa, that period before joining the Amish Plain folk with baptism,while being lured by the worldly “English” life. Carrie, who is attracted to Sol, is tempted to elope, despite objections by her father, until a horse unexpectedly kicks Jacob in the head. The Amish do not accept government assistance and do not buy health insurance. Esther, Jacob’s second wife, thinks infusions of factor IX cost too much so Jacob receives no treatment for this accident; he dies.
Oddly, Carrie’s biological mother had been a frail carrier of hemophilia; Carrie’s brother also has hemophilia. Carrie quickly makes a life-altering choice; she chooses to care for her brother and to marry her father’s preferred suitor, Daniel Miller. Their marriage, held soon after in September, is one of convenience that is not consummated. Unfortunately, Daniel is killed in the following March when his horse and buggy are struck by
a teenage driver speeding in her car.
Now a young widow, Carrie assumes the responsibilities of a farm and a brother with hemophilia. Other household members include her older stepsister, Emma, who is looking for a husband, and Daniel’s cousin, Abel, who was recently released from prison in Ohio. To add to
Carrie’s problems, the deed to the farm is in Abel’s name and an unscrupulous land developer wants the Amish farms for a golf course. Carrie has never resolved her feelings for Sol and her choice of being Amish. Nine-year-old Andy is bullied by the English neighbors for having hemophilia. He is overly active, resulting in separate accidents of a broken arm and a cut heel requiring stitches and medical treatment. “Later, at the hospital, Carrie sat by Andy’s bedside in the emergency room as a long tube snaked from an IV bag into his vein, filling him with factor IX to help his blood clot. Mesmerized by the television hanging on the wall, Andy watched it, slack-jawed.” (p. 28).
Richard writes, “This romance novel illuminates the struggles of the Pennsilfaanisch Deitsch (Pennsylvania Dutch) to maintain their Plain folk lifestyle while coping with intrusions by the “English.” The characters usually speak English though they occasionally interject the Deitsch vernacular, followed by an English translation in italics to assist the reader. The rare case of a person with hemophilia marrying a carrier of hemophilia is accurately described and is possible due to the marriage patterns in this closed community. Other than the unexplained treatment in the hospital of using intravenous bags rather than syringes for factor IX infusions, the portrayal of having hemophilia is realistic, with treatment covered only by personal payment. The author, whose grandfather was raised Amish in Franklin County, Pennsylvania, lives with her family in San Francisco, California.”
We’re fortunate in that some HTCs, such as the Indiana Hemophilia and Thrombosis Center, care for the Amish, and don’t use bags of plasma! The Amish are a true community: when there are extreme medical costs, the community rallies together to pay for the treatment without relying on hand-outs from the government. Difficult but highly admirable. A good read, which Richard recommends.

Suzanne Woods Fisher, 2010, The Choice. Grand Rapids, MI: Revell. 309 pages.

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