This weekend I visited Cuyahoga, Ohio, near Cleveland, to speak at the Northern Ohio Hemophilia Foundation’s annual meeting. I am very grateful to Lynn Capretto, executive director, for inviting me. I was able to meet with about a dozen new families I had never met before. The weather was great, the turnout wonderful. Lynn and her team worked hard to make this a success.

My talk was on insurance (what else?) and it appeared much of the information I shared was new to these families, who listened with great attention. I was happy to know that all the families subscribed to the NOHF’s newsletter, as it’s very important that everyone these days get their local newsletter. Insurance is different from state to state and your local hemo org is the best place to get information about changes. But I was amazed that almost none of the families get HemAware, the NHF’s magazine. I urged them to sign up Monday, and of course, Monday is a holiday. Okay, make it Tuesday. If you are reading this and you don’t get HemAware, please sign up! Call 1-800-42-HANDI and get on the mailing list.

Well, the audience redeemed itself. Everyone knew what PBMs were and that’s good news. What I didn’t know, and wish I had, was that certain factor brands in Ohio are being considered for a PDL. Scary stuff! Don’t know what PDL is? For shame. Order our newsletter PEN and find out. You NEED to know!

We had a lot of laughs when I had to select the raffle winners (I say have to: Lynn volunteered me because if someone was upset that they didn’t win, they could blame me but so what? I’d be on the plane headed for Boston!). The winners? The delightful family who had been sitting right next to me all throughout the day: Chris and Renee LaBelle. Sharp, proactive and articulate. I couldn’t think of a better family to win a free trip to NHF this week in Philadelphia!

Well, I had another celebrity citing at the airport in Cleveland. I travel a lot, and now and then I bump into an odd assortment of celebrities. In the past this has included Richard Simmons, Paul Newman, Ben Affleck, Tony Robbins, Bo Diddley, and Jim Rice and Pedro Martinez (both formerly of the Red Sox). This time it was Erik Estrada. Remember him? The hunky cop in the 1980s show CHiPs? He’s still hunky. I was walking right behind him for a long while, not realizing who he was but noticing him nonetheless (celebrities somehow carry themselves differently!) and a woman cried out “It’s Erik Estrada!” I didn’t grab a photo as I am wont to do, to add to my “Wall of Fame” at home, but I do have a photo of me with Dan Holibaugh, a long-time friend, fellow parent and current employee of Matrix. Thanks to Matrix and Baxter for co-sponsoring my visit to Ohio, and to NOHF for a wonderful event.

Tune in this week to NHF in Philadelphia! I hope to have some spare time to blog!

When Hemophilia Throws a Curve Ball

This past week I was reminded first how blessed I am to have a son with “only” hemophilia, and second, how important it is to remember our community members who are in the hospital or confined at home. I visited Rich P., a 23-year-old with hemophilia and inhibitors, who is as compassionate as he is passionate, and who is as proactive as he is intelligent and thoughtful. He is a leader with the NHF Youth Commmittee, on at least two patient advisory boards, a full-time college student, and has volunteered on two trips this year to help the poor in Jamiaca and in New Orleans.

Sadly, Rich has been hospitalized for over two weeks, for complications related to his inhibitor. Rich called me the day he was hospitalized, ironically just as I was preparing an infusion for Tommy, also bed-ridden with a psoas bleed. Tommy was better within hours; Rich would be an inpatient for another two weeks. For a guy as active as Rich, being immobilized in the hospital is nothing short of mental torture. When I visited he was surrounded by balloons, cards and stuffed animals and eventually his wonderful friends. As blessed as he is with charisma and a loving family, he was suffering terribly. Yet he still had the kindness to ask about my family and work! Some devoted friends in the hemophilia community have been visiting him, advocating for him, and keeping his spirits high. I was proud to see how our community cares for its own. And I was completely impressed and touched when the VP of a factor manufacturer traveled hours to spend an afternoon with Rich.

Thankfully, many of us will never know that kind of suffering, thanks to advanced treatment. But once in a great while, hemophilia throws us a curve ball. Do you know of someone who is bed-ridden, in the hospital or in pain due to hemophilia? Don’t forget them. Send a card, flowers, make a call. You won’t believe the difference it will make in their spirits. The attention you show really helps relieve pain, anxiety and loneliness. Bless all of you who care for the sick, suffering and lonely in our community.

Novo Nordisk Summit Meeting a Success

I attended a great event over the weekend–the Novo Nordisk Inhibitor Summit in Baltimore, Maryland. About 45 families with inhibitors attended this private event to network with each other and to learn more about inhibitors. This is the fourth one I have attended since they were inaugurated last November, and I think they are one of the greatest things happening in our community right now.

Guest speakers included Val Bias (patient advocate) of San Francisco, Dr. Guy Young of California, Dr. Barbara Konkle and Regina Butler, RN, of Pennsylvania, Ed Kuebler, LMSW, Dr. Ed Heller, Angela Forsyth, PT and Dr. Prasad Mathew of New Mexico. Great speakers and experts. Topics included: an inhibitor overview, treatment options, surgery, and exercise and sports.

A wonderful dinner was held the at world-class Aquarium where families were happy to chat with each other all night, grazing on great seafood and gazing at a huge submarine parked right next to the outdoor pavilion where we dined! I was lucky to sit and swap stories with some friends from Massachusetts.

Unusual for our community, the event is not a venue to market products or services. You see no promotion of NovoSeven. Novo Nordisk sales staff are not allowed to attend. The event is managed by a third party, Cadent Medical, so you never feel that you are being marketing to. Another Summit is being held in Chicago on October 28, and if you have an inhibitor and have not been able to attend so far, you are most welcome! Some travel grants will be available to eligible individuals. Please call (888) 706-6867 for more information or check out Don’t miss it!

Welcome to HemaBlogTM

Welcome to LA Kelley Communications, and to our first blog. Many of you may already receive our books, newsletters, and emails. This blog will be a more timely and personal way to share what is happening in the bleeding disorders community. I’ll be like a reporter with my postings: I’ll share with you what I observe on my visits to chapter meetings, symposia I’ve attended, feedback I have heard. Many of you ask about my humanitarian missions to the developing world–this will be the place where I will share my impressions, agendas and photos.

We’ve had a very busy summer, with meetings all across the country. Many times I wished I could have shared immediately with you all what I learned and what I saw. Now I can! We like being “first of a kind” in what we do, and this could be one of the first professional blog sites in the hemophilia community. I will try to update the blog weekly, on Mondays. I hope you will visit us regularly and learn more about what is happening in our community from the eyes and ears of someone who cares deeply about our future and about our chidlren.