Hemophilia leadership

Become a Leader! (Fast!)

Laurie Kelley February 2, 2014

We have a lot of programs in the hemophilia community, but this is one of the best. You may need a lot more than just a diploma to secure a great job; you’re competing with talented and smart people. One thing that all prospective employers look for (me included) is leadership: that esoteric quality about someone that sets them apart from the pack. You don’t always learn it in school, but you can learn it here.

I was present in 2006 when a group of great people from our community came up with this idea and presented for funding. The Bayer
Hemophilia Leadership Development Program (BHLDP) provides college students from the hemophilia community a unique internship opportunity to build foundational leadership skills while also deepening their connection to the hemophilia community. BHLDP, now in its eighth year, gives selected interns an opportunity to work directly with the Bayer marketing team in Whippany, New Jersey. Interns also get to experience rotations which include a public policy awareness session in Washington D.C., a community advocacy-focused visit to National Hemophilia Foundation in New York, and activities with Bayer’s partners.

When discussing their favorite aspects of the internship process, the former interns commented that they were surprised—and thrilled—by the amount of real work they were able to do during their time with Bayer. “We were exposed to real meetings and real experiences,” said Lewis Chesebrough, a 2012 BHLDP intern. “We participated in a real professional environment with people who were supportive and kind to us.”

In addition to getting to do real, meaningful work, the program also helped interns chart a course for their future. Christian Mund, a member of the 2013 internship class and a junior at Syracuse University, said that his Bayer internship helped him realize marketing was the path he wanted to pursue following graduation. “Before the internship, my local sales representative asked what I wanted to do after college; I had no idea. After I finished the BHLDP internship program, I knew marketing was what I wanted to do because the internship really opened my eyes to what I could do after graduation and now I am looking for other internships in marketing.”

Following a BHLDP internship, many former interns have stayed involved in the hemophilia community. Rich Pezzillo, a member of the 2007 internship program, is now the Communications Director at the Hemophilia Federation of America (HFA). “The BHLDP internship helped give me direction on what I was most passionate about and how I felt most fulfilled,” said Pezzillo. “I now have opportunities to help other young adults that may not have the proper resources or the family to talk to about what it is like to have a bleeding disorder.” And Aaron Craig, a member of the 2010 internship class, started a company called Microhealth that developed an app for the hemophilia community that he says is like

“Facebook for the health care system of hemophilia.”

Bayer is currently accepting applications for the 2014 Bayer Hemophilia Leadership Development Program. Applications for the six-week, paid internship are due by Friday, February 28, 2014. (Yeah, I put that in red, so move on it!) For more information and to apply visit https://www.livingbeyondhemophilia.com/webapp/index.jsp

For US patients only.

(Truth in advertising: The above is an unpaid announcement for the common good)

Great Book I Read

Act Like a Lady, Think Like a Man: What Men Really Think About Love, Relationships, Intimacy, and Commitment by Steve Harvey

This was a gift from a co-worker who obviously thinks I need help in the dating department. She might be right, after reading this hysterical and no-nonsense view of how women should date from a man’s point of view. Blunt and taking a somewhat dismal view of men in general (think “dog training”), there are still some nuggets of truth here and it’s a whole lot of fun to read anyway! Men are not just from Mars, they are an entirely different species altogether and in severe need of BF Skinner’s behavioral training. I read it in one night and laughed a lot. And learned a few things. Three/five stars

Who are the Future Hemophilia Leaders?

Laurie Kelley October 22, 2012

mentor (n.)

We often hear the word mentor, but what does it mean? Mentor hails from Greek writing. Mentor was a friend of Odysseus and adviser of Telemachus (son of Odysseus and Penelope) in Homer’s Odyssey. It may also derive from the Greek word mentos (intent, purpose, spirit, passion) or from the Latin monitor (one who admonishes), or from the root men (to think).

One of the prime responsibilities of any leader is to mentor and raise up other leaders. It does no good to create an institution, organization, or program and not share the leadership knowledge and managerial information required to run it and carry forward the vision. Leadership is an art, and young people can learn from the current masters how to use the tools and right perspective to create their own masterpieces. Never is this needed more in hemophilia. Our current leaders at NHF are working actively to recruit and teach up and coming leaders.

And industry is too! Here is a unique and brilliant opportunity to particiapte in leadership training. Check it out and apply today! Become a leader, with an aim to helping the future hemophilia community, here in the US and globally!

Program: Bayer Hemophilia Leadership Development Program (BHLDP) Internship

Requirements to Apply: Students enrolled full-time in college who are touched by hemophilia and have a strong interest in and commitment to becoming a future leader in the hemophilia community.

Program Details: Interns will travel to Bayer’s U.S. Headquarters where they will participate in activities that aim to help them grow personally and professionally. Selected interns will:

· work directly with leaders at Bayer as they participate in formal training on communication skills, effective problem solving, leadership and compliance

· work with hemophilia organizations in the area to learn about the work done to support the hemophilia community and how business professionals can support these efforts

· meet with healthcare public policy professionals in Washington D.C. where interns will see first-hand how effective advocacy relations impacts legislative decisions.

This is an this eight-week, paid internship (June – August 2013). For more information and to download an application, visit www.livingbeyondhemophilia.com/intern.

Applications are accepted till February 8, 2013. I’ve known quite a few people who have finished this exceptional training and loved it! It’s helped them get jobs and open many new doors.

20/20 Vision in Puerto Rico

Laurie Kelley September 17, 2012

“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.

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!

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.

Visión

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.

Wanted: Leaders!

Laurie Kelley February 6, 2012

You may have heard that the hemophilia community is a bit worried about developing leaders. Our generation is getting “old,” and has fought our many battles, and continue to fight on the insurance front. We need young people with talent, ambition, compassion and vision to carry the torch in the future.

But are we victims of our own success?

We’ve made life good for the new generation of kids with hemophilia, and as expected, they are having good lives–and disappearing from our radar screen. We need them to come back, to pitch in, to help, to lead.

To address this, Bayer developed a unique program in our community to train young people to think about careers in hemophilia, or at the very least, to give back through volunteering. Bayer HealthCare offers the Bayer Hemophilia Leadership Development Program (BHLDP), and expanded it this year by adding a community element to the internship experience. The 2012 interns selected to participate in this prestigious program will spend five weeks of the eight-week program at a local hemophilia organization.

The company is currently seeking applicants who are attending college and have been touched by hemophilia. Those interested have until Monday, March 12th to apply for the program, which runs from June 18th-August 9th. Participating interns will engage in leadership training, hands on business projects, marketing and communications strategies, and help support the local hemophilia community. Additional details and the application can be found at
www.livingbeyondhemophilia.com/intern.

Of the many organizations that applied to participate, four chapters were chosen to mentor and manage an intern. They are the Arizona Hemophilia Association, Bleeding Disorders Alliance Illinois, Hemophilia Foundation of Upstate New York – Rochester and Texas Central Hemophilia Association.

The 2012 program begins with a two-week orientation at Bayer HealthCare’s U.S. headquarters in Wayne, NJ, where the interns will receive training on communications, problem solving and leadership skills as well as work with people in a number of departments to gain insights into how various parts of the company operate. Interns will spend the following five weeks at the selected hemophilia organization, where they will gain first-hand knowledge about the work done on a local level and engage in projects building on the skills developed earlier in the program. During the final week at Bayer, the interns will report on their experience and present a project developed with their local chapter.

Bayer established the Hemophilia Leadership Development Program in 2007. Since that time, many program participants have become more active hemophilia advocates and have gone on to careers serving the community, government and industry.

This is a fantastic opportunity. If you know of a young person with hemophilia who has leadership potential, please have them apply today!

Great Book I Just Read
The Killer of Little Shepherds: A True Crime Story and the Birth of Forensic Science by Douglas Starr (Kindle edition)

Starr never fails to engage. From 1894 until 1897 in the countryside of France, Joseph Vacher, a vagabond and discharged military enlistee, began a bizarre killing spree, from young women to little shepherd boys. Dispatching his victims rapidly, mutilating or violating them, and moving on immediately, he became a killing machine that terrorized France and baffled police. Forensic science was nearly nonexistent, and police imprisoned innocent people based on hearsay. Meanwhile, Dr. Alexandre Lacassagne, France’s leading expert in legal medicine and professor at the University of Lyon, dedicated himself to the case and in the process advanced forensic science. Ultimately, this became one of the first cases of determining what is legal insanity, as Vacher, once apprehended, became his own counsel in effect and pushed to be declared insane. A battle ensues between Vacher and Lacassagne, which would have repercussions for decades to come. Fantastic story, well written, and enlightening. Four/five stars.

Do you have what it takes to become a leader?

Laurie Kelley January 10, 2011

Author and leadership guru John Maxwell writes, “Whatever the question, the answer is leadership.”

Here’s a great program and a great opportunity for some qualified young people in the hemophilia community: a leadership-training program that pays. The Bayer Hemophilia Leadership Development Program is a unique opportunity to learn about hemophilia from an industry point-of-view by serving as an intern at Bayer, makers of Kogenate FS.

The internship is on location at headquarters in Wayne, New Jersey. Participants will be paid $15 an hour. During the internship, participants sharpen leadership skills in real-world scenarios that enrich the hemophilia community. Internship modules include:

▪ leadership training classes to develop presentation skills, learn about effective project management, and discover successful
time management techniques.
▪ a personal challenge project which allows interns to apply their new skills to design and create a project
▪ a visit to the Bayer manufacturing facility in Berkeley, California
▪ a meeting with healthcare public policy professionals to see how effective advocacy relations impact legislative decisions
• an exploration of marketing and communications strategies

This is an incredible opportunity. I know quite a few of past participants and they have all greatly enjoyed their experience, and learned a lot.

Applications are due by Monday, March 14, 2011. All applicants should be college students (sophomore through senior year), with a strong tie to hemophilia, and who demonstrate a commitment and interest in being a future leader in the hemophilia community.

Visit http://www.livingbeyondhemophilia.com/webapp/internships/forms-for-bayer-internships.jsp to learn more!