Events

The CCBF Gala Ball: It All Started with a Child

Laurie Kelley November 3, 2008

I asked myself not only quietly, but on stage, aloud to the crowd of some 600, what was I doing in New York City, on stage, sharing an award with three remarkable celebrities on my birthday? Less than a week before I was in the sweltering heat of the Philippines, visiting families with hemophilia who earn only about $3 a day.

I attended the incredible “Breakthrough Ball” Gala fundraiser for the Children’s Cancer and Blood Foundation (CCBF) on Tuesday, October 28, not only as a guest but as an honoree. Actually Save One Life was being honored, the nonprofit I founded in 2000 to offer direct financial sponsorship to the children with hemophilia in the developing world. Also being honored were rapper/music producer Swizz Beatz, actor Steve Guttenberg, and former New York Yankees pitcher Al Leiter. To see my name on the program with these gentlemen was humbling.

This was a black tie event, my first. After lavish cocktails and hors d’oeuvres, we were seated. I sat with Dr. Donna DiMichele, renowned hematologist of the New York Presbyterian Hospital, who is on the board of directors of the CCBF, and who recently just joined the board of Save One Life, and also Tara Reddi and Janis Cecil (with husband Charles) of the Marlborough Gallery. I truly enjoyed chatting with artist Hunt Slonem, who sat to my left. To make the evening even more special, my daughter attended as my date, as this was also her birthday!

Actor Charles Grodin opened the evening, and surprised us all with a guest appearance by singer Lou Christie! He sang his signature “Lightnin’ Strikes,” a song released in 1966. I loved listening to it in 7th grade, and still do!

Then Charles Grodin aired a music video by Swizz Beatz, which showed him visiting children with cancer in the hospital. He created a theme song for the CCBF and was the first to receive an award. I must confess I had never heard of him (I think I’ve been traveling a bit too much these past few years) but what an exceptional young man to be so devoted to charity!

Then Steve Guttenberg was presented with his award. I didn’t realize this comic superstar had done so many charitable things. From spearheading an effort to get 50,000 eyeglasses for low income children, to volunteering 16 hour days incognito to help Katrina victims, to funding the “Guttenhouse,” a transitional home for foster children.

Also accepting an award was Al Leiter, who has 19 years in the Major Leagues as a pitcher, and has won nearly every philanthropic award MLB offers, including the 2000 Roberto Clemente Award. He is now a baseball analyst for the YES Network. He is one athlete renowned for his charity, having given more than $1.5 million since 1996 to various children-related charities in the New York area and in south Florida.

An incredibly moving speech was given by Ron Iervolino, president of CCBF, that had many of us in tears. His own child suffered from cancer, and he appreciates the generosity of the audience and of the celebrities in helping to fund research for a cure. Ron presented me with my award, and again, I was humbled to accept.

It was truly an honor to be included among such amazing people. We often hear so many bad things about celebrities; it was refreshing to be reminded that so many of them work quietly and generously. I thank the CCBF for honoring them. I had a warm handshake from NFL great Tiki Barber, and then took the podium to thank the many people involved in this evening.

I accepted the award, not for what I have done, which by my standards hasn’t been much yet, but as a pledge for what I will do. I promised the audience that this evening, on my 51st birthday, I would enter the second half of my life completely dedicated to Save One Life, which will become the voice of individual patients with hemophilia, impoverished and suffering. I pledged that I would not rest, or retire, and would work until my last breath to alleviate the suffering of children in the Third World with hemophilia.

While standing for photos with the honorees, I must comment on how friendly, down-to-earth and kind they each were. I wish we could give more attention to celebrities like these who do such outstanding work for children who suffer. Ron and I both know: nothing is worse than watching your child suffer. And nothing is as amazing as seeing strangers help and care.

So how did this all happen? How did I end up having this photo with three such handsome celebrities? I have to thank Tara Reddi first and foremost. Vice president of the Marlborough Art Gallery in NYC, her cousin’s son, Bahnu, has hemophilia and lives in India in Vijiawada. He happened to be registered as a beneficiary of Save One Life. When Tara learned this, she decided to learn more about Save One Life. She was so touched that we were helping children like her cousin’s son, and offered to help us. Soon, she became a board member, and soon after, she had a fundraiser for us at her Gallery. Dr. Donna DiMichele attended that event, was surprised to learn about Save One Life (Donna and I have known each other for years, but we’ve been quiet about Save One Life till now) and suggested my name as honoree for tonight. So thank you, Tara and Donna! You have helped our small organization grow in so many ways.

I’d also like to thank Les Lieberman, chair of CCBF, for allowing me this great honor. And to the many corporations who donated to CCBF on behalf of me: Bayer Corporation (Terry, Paul, Marianne, Bill, Joe), Baxter BioScience (John, Michelle, Pete–so sorry the snowstorm kept you away!), and Grifols (Ray, Eva, Virginia, Kathy and Chris). Thanks also to attendee Neil Herson, president of ASD Healthcare, who sponsors 46 children through Save One Life, and to Patrick M. Schmidt, CEO of FFF Enterprises and Save One Life board member, who also sponsors 46 children, but could not attend. Thanks to those who donated but could not attend: CSL Behring, Ellis Sulser of Factor Support Network; Barbara Chang of National Cornerstone Healthcare; Shari Bender, mother of a child with hemophilia; and Eric Hill, president of Biolife.

You all made the evening very special, and given us all new motivation to ensure the vision of Save One Life is fulfilled–that every child in poverty with hemophilia will have a sponsor, someone who cares. No one, no child, should have to suffer alone or suffer at all. Thank you and God bless you who work on behalf of ill children.

Fund Raising Dallas Style

Laurie Kelley September 28, 2008

Yesterday I enjoyed western hospitality at the Hearts for Hemophilia gala fundraising event hosted by the Texas Central Hemophilia Association. I was greeted at the airport by long time friend Andy Matthews and his 2 year old son Keeton. What a change from London! If you’ve never been to Dallas, it’s easy to describe: hot, flat and big! Big buildings, monumental, and very friendly people. They treat guests well!

The event was spectacular. About 200 people showed up in black ties, cocktail dresses and with open checkbooks to bid on a silent auction and later to play casino. But first, Shanna Garcia, president, welcomed everyone and presented the theme: Moms Making a Difference. She mentioned the role women play in raising a child with hemophilia, and cited some of the audiences in the room. Then she showed a video of Camp Ailihpomeh (Hemophilia spelled backwards), which highlighted the great work of Texas Central, and the joy of the campers.

Then I got up and promptly put a damper on things by showing a multimedia slide show about the plight of those in the developing world. Well, it wasn’t so bad. After sharing a few stories and statistics, I also showed what happens when factor, funds and training flow into the developing world: night and day! I highlighted the Dominican Hemophilia camp “Yo si puedo,” with music a la Gloria Stephan, to keep things upbeat. Many people were moved by the photos and asked to sponsor children and even come on a trip with me!

Shanna and her colleagues Christy Argo and Shelley Embry (executive director) presented me with a huge cardboard check… and a real one for $1000 for Save One Life, our child sponsorship nonprofit.

We noted sadly the passing of Paul Newman, a tremendous friend to the hemophilia community, through his Hole in the Wall Gang Camps. I shared with the audience that Newman’s camp left a lasting mark on my children who hands down rated it way better than DisneyWorld. Why better? it made each child feel that they were the center of the universe for one week; that they were unique, valued and important. No amount of rides and characters can take the place of that.

I loved getting to meet so many parents who have been on my mailing list for years: to hear their stories, share some laughs and bond. What a great way to cap off a long week from home!

My deepest thanks to Andy, Shanna, Christy, Shelley and everyone who made this evening so hospitable, enjoyable and exciting! Thank you for the support for Save One Life. Dallas–it’s a great place to visit!

The Future of Plasma Products

Laurie Kelley June 23, 2008

This past week I attended a fascinating event: The Plasma Protein Therapeutics Association (PPTA) in Washington DC. The PPTA is a nonprofit organization whose mission is “to promote the availability of and access to safe and effective plasma protein therapeutics for all patients in the world.” Attending were representatives and the heads of the major plasma producers in the world, including Baxter, Grifols, Octapharma, Talecris and CSL Behring. With only about 300 people present, it provided a more detailed and intimate look at issues affecting plasma.

The theme was “Access to Care.” Larry Guiheen, President of Biopharmaceuticals, Baxter, and also chair of the PPTA Board, kicked off the meeting with an overall look at the state of the world: Access means different things in different countries, he said, referring to the poor versus the rich countries. Health care goals of all countries include improving the overall quality of care, and providing access to care. Healthcare should be viewed as an investment in poorer countries (or what manufacturers call emerging markets); it’s expensive at first but someday it will pay off. What therapies will a government support? Those with the highest impact–meaning, I think, that lower cost drugs will allow governments to buy the more drugs, allowing for expanded treatment for all citizens. And plasma products generally are lower cost than recombinant ones. He added, the key to access is reimbursement of care.

Larry continued by saying, in the US, plasma is a key ingredient to health care. The US is an exporter of plasma, where self-sufficiency [in creating its own plasma] is key, but sometimes a country actually limits care. He pointed out that one limitation are trade barriers, which need to be broken down. China used to have barriers to importing plasma. Overall, he concluded, global plasma production capacity is increasing, plants are expanding, and collection centers are expanded.

Mark Skinner, president of the World Federation of Hemophilia, gave a wonderful presentation on the work of the WFH: there are now 115 national member organizations (NMOs). There are 219,000 patients with bleeding disorders identified.

I gave a presentation on my visit to Zimbabwe in December, to contrast the difference in access to care issues in a country with no hematologist and economic collapse, to a country with excellent care but increasing access hurdles, the US. I also gave my presentation on the Current Storm, which in a nutshell outlines the changing landscape of the hemophilia industry under the tightening screws of payer reimbursement restrictions.

A lively panel discussion with executive representation from the plasma manufacturers (and one lawyer to prevent any violation of antitrust laws) ensued on the last day of the conference. The panel came alive at the mention of paid versus voluntary donors. Wolfgang Marguerre, chairman of Octapharma, a Swiss-based factor manufacturer which has just recently set up shop in the US, warned about shortages of supply: if there is an indication or new product for multiple sclerosis treatment that uses plasma products, there will not be enough plasma for the US population.
We need more volunteer donors, he stressed. “We have to use our influences to get them to understand our message,” he strongly pointed out. “The time has come to end ideological warfare against these types of donations.

Mark Skinner noted that the World Health Organization (WHO) allows only voluntary donations, and this is not sufficient to meet world demands. He asked, how can we reconcile WHO policies and the needs of our population?

Marguerre added, “There is confusion about [the role of] transfusion. [Authorities believe] Plasma is special and needs to be voluntary.”

Jan Bult, president of the PPTA, then asked the board their opinions of self-sufficiency, the ability of a country to produce its own plasma for its own people. I was shocked to learn that only the US and Germany are capable of doing this! In large part, because the US pays its donors, something that is considered forbidden, unethical and dangerous in many countries, and by some groups here in the US.

Dr. Gregor Shultz, chairman of the board of Biotest, pointed out that Japan had been trying for 20-30 years to create self-sufficiency and still can’t do it. Self-sufficiency won’t work there. Larry Guiheen added, “We pay donors, and other countries must too if they want to be self-sufficient.”

Japan became a focus of the discussion, and I learned that in Japan, the Minister of Health could be held personally liable if something goes wrong with blood supply. And the HIV scandal still haunts Japan, which then affects their regulatory department. The Japanese government can restrict imports of blood products when demand for these products hurts domestic production. And the government prefers blood products from Japanese blood. Blood is also labeled “voluntary” or “involuntary” yet no compensation is given.

Obviously, plasma production and supply was viewed from a marketing point of view: restricted markets mean the manufacturers cannot sell their products there. As a businesswoman, I enjoyed the presentations and discussions immensely and learned a great deal about the plasma business. As a humanitarian, I appreciated perhaps more than anyone present the positive impact plasma products have on the patients with hemophilia in the developing world. They are the future of care for so many countries, and we need these products. I feel that the US is one of the engines, if not the engine, that drives the hemophilia industrial world. We need out manufacturers to continue to produce plasma products, and keep the incentives that motivate them to product it, for choice, access to care, and for our brothers in the developing world.

Congratulations to Jan, Julie Birkofer and the entire PPTA staff who hosted this engaging, interesting and stimulating conference. I look forward to attending next year!

(Photos: Jan Bult opening PPTA meeting; Wolgang Marguerre of Octapharma; Mark Skinner of WFH; Kerry Fatula, director of West Penn. Chapter of NHF with CSL Behring representatives; Laurie and Jan Bult)

“Merhaba” from Istanbul

Laurie Kelley June 6, 2008

The World Federation Congress in Istanbul has been both spectacular and exhausting! With over 4,200 in attendance from over 100 countries, delegates represent developed and developing countries, different ethnicities, races and religions, and are patients, patient groups, doctors, treatment centers, researchers, pharmaceutical manufacturers and distributors.

Each day opens with a plenary session, and then there are lectures and presentations on either a medical/scientific track, or a multidisciplinary track. The multidisciplinary track includes psychosocial, patient organization or individual perspectives. I’ve a great interest in inhibitors now, as I am writing a book on them, but was unable to get to the inhibitor presentations. (I’ll be attending the Inhibitor Summit in Denver in July and will report from there) I find myself most interested in the patient organization challenges and the presentations representing a patient perspective, as this is where a lot of my work is focused. For example, my friend and colleague, Maria Andrea Belen, a mother from Argentina and also the Cordoba Chapter president, gave a wonderful presentation on the perspective of siblings (I am going to print it in an upcoming issue of PEN). I recall when I first met M. Andrea in 2000, at the WFH meeting in Montreal. She had come on her own, was a bit overwhelmed, but wanted to do something for the families in her corner of Argentina, which she felt was neglected. And now, look at her: eight years later she is reputed to have the strongest chapter in Argentina and is presenting papers at the WFH! This is empowerment in action; leadership manifested.

The theme of this Congress is “Treatment for All.” This is a good vision, but we are a far cry from that. I met individually with representatives from Pakistan, Nepal, India, Sri Lanka, the Dominican Republic, Romania, Ethiopia, and Zimbabwe. Challenges with access to factor continue, ranging from countries like India, which can mobilize financing to pay for some imported factor, to countries like Ethiopia, which has nothing. And Zimbabwe? If you’ve read my blog, then you know what it is like there. In Romania, the government has shown great progress and is buying more factor, but it still needs to be better distributed to the areas beyond the major cities. And Pakistan has made tremendous progress but educating patients remains a high priority.

You can see the huge disparity in priorities by reading what was printed in Hemophilia Daily, the Congress daily publication. From a representative from Ecuador: “Poverty. There are big differences from country to country, but in the end it boils down to money. Even if you convince your government that hemophilia is important and they need to provide supplies for patients, it still might not be possible.” Then from Germany: “At least in Europe, the main obstacle is still the availability of prophylaxis for everyone.”

Still, in all the many years I’ve been attending these Congresses, I have to say that I see overall improvement. These Congresses at once make you wince at the millions of pharmaceutical dollars spent on travel, entertainment and marketing props that will only be useful for a few days, and yet you have to balance this with knowing that people are networking, brainstorming, strategizing. I witnessed wonderful connections being made that might never have taken place, with promises to help those in need. Now often when we return home, life resumes and the goodwill starts to fade fast as we get distracted with our daily lives, but there are a select few who will continue to follow through on promises.

One such miracle took place on the last day. I had just wrapped up a meeting with Tendayi Mamvura of Zimbabwe, mother of two boys with hemophilia and volunteer with the Zimbabwe Haemophilia Association. I had just seen her in December, of course, and have known her for years. I’ve been trying for a long time to get the international hemophilia community to do something to aid Zimbabwe, which basically receives help only from our company. And I think I’ve been the only person from the hemophilia community to visit the country since 2000! As we finished up our meeting, Jan Bult, president of the Plasma Protein Therapeutics Association, a nonprofit based in Washington DC, introduced himself to me. We had been hoping to meet at the Congress. When I introduced Tendayi to him, as she was getting ready to leave, he struck up a quick conversation with her, and, taken with what we told him about the utter lack of care and hematologists in Zimbabwe, suddenly invited her to the June 17th meeting–where she will be able to address 300 people working in this international community. She looked stunned and accepted; I couldn’t have been happier. At long last, perhaps now maybe we can get real aid and resources to long-suffering Zimbabwe! (Where aid agencies are now being targeted as acting illegally against President Mugabe)

I regret I didn’t get to see Kiss Lazlo, the Romanian father who biked for two weeks to attend the Congress from Romania, and to raise awareness of hemophilia by interviewing with media along the way. He made it, sore but happy, but with the huge crowd it was easy to miss certain people.

With so many people in attendance it was lively and crowded, exciting and draining. The pharmaceutical companies have their massive booths with plenty of educational material. The WFH had a splendid resource center where we could walk in a retrieve dozens of educational booklets on a variety of relevant topics. There seemed to be fewer patient organizations with booths, although I met the lovely guys from the Irish Haemophilia Society and strolled by the Algerian, New Zealand and Iranian Hemophilia Society booths.

And there are social events: industry has their own exclusive, invitation-only events, but there are also general events such as the cultural event Tuesday night at the Topkapi Palace, and the final night event at the Hilton. I had a ticket to it and never have missed one, but a bad headache laid me low, and I missed out on it last night.

Today was the general assembly, in which the national member organizations elect new leadership. Mark Skinner, former NHF president, person with hemophilia and current president of the WFH is up for re-election. I’ll post the results as soon as I hear. Good luck, Mark!

Thanks to the WFH for a remarkable Congress, really one of the best ever. The amount of coordination that must go into one of these events is almost incomprehensible, but the WFH staff and event planners make it look routine. Thanks also to industry for sponsoring travel for so many, and for providing food and drink and entertainment. And thanks to the Turkish Hemophilia Society for hosting this amazing event. We will all continue to work harder than ever to make treatment for all.

I am here till Monday, and will post a few photos of my tour. I haven’t seen anything of Istanbul till today. A city of 15 million, it is the only city on earth that straddles two continents!

See all the photos from the Congress here.

Check in tomorrow…

(Photos from top: With Dmitry Chistyakov, president of the St. Petersburg Hemophilia Society (Russia); With Dr. Uri Martinowiz, chief hematologist of Israel; With Daniel from Romania)

Empowered in Pittsburgh

Laurie Kelley April 27, 2008

I visited Pittsburgh this past weekend to spend time with the families at the Western Pennsylvania Chapter of the NHF. What a fantastic event! Kerry Fatula, executive director, and her team did a marvelous job bringing together families from all over Western Penn for a weekend of education, socialization and fun. One thing that struck me right away was the high involvement of women and girls in this community: from girls with VWD to carriers and siblings. More than almost any other place I see that women have really become empowered in this chapter.

Now, I might be a bit biased, since Kerry is a good friend now and I’ve been to this event before and really enjoy this part of the country, but WPCNHF works hard to achieve its many goals for its families. The weekend started with a Friday evening dinner and excellent talk by Dr. Margaret Ragni, hematologist from the local HTC. I was impressed with her breadth of knowledge about the future of VWD and hemophilia. She spoke about current trials for longer acting VWD and factor VIII, and our chances of successful gene therapy. She spoke in easy to understand terms, despite the difficult nature of the subjects.

On Saturday we had a mix of speakers: Rob Dash of Baxter spoke about insurance reimbursement issues, on which he is an expert. I gave a talk about raising a child with hemophilia, summing up the various things we must learn and undergo in 20 years. In compiling this talk, I was a bit dazed myself reviewing how much we have learned and how far we have all come. My friend and colleague Diane Horbacz was here from HHS to give her “Karing for Kids” workshop, an excellent program that actively engages children in hands-on learning about hemophilia in a fun manner. Later on, Laureen Temple of CSL Behring spoke about blood clotting, and Virginia Kraus of Grifols (whom I’ve known for at least 17 years!) spoke about VWD. I ended the afternoon with my empowerment talk, which can be applied to hemophilia as well as many life circumstances. Many companies set up booths and consumers had the chance to visit with everyone and learn more about services and products. That evening was lively, with a full course meal and a very loud DJ with a selection of music that spanned from AC/DC to hip hop to disco. Something for everyone! And there are a few Bob Segar fans in the audience, and I have the incriminating video of Dawn and Rita to prove it!

I met some truly extraordinary families. Some needed coaching in dealing with tricky medical situations: what should they do, who to turn to? Others simply shared with me what they’ve been through. I was thrilled to see Guy, a young man with hemophiilia, who I have known through the years and watched grow up. Guy is special to me: his story was in my first edition of Raising a Child With Hemophilia, and many of you might recall his story. He suffered a devastating spontaneous head bleed as a baby. His mom’s quotation was the longest in the book, serving as a warning to families who instinctively know something is medically wrong with their baby, but who are lulled into thinking it’s only the flu, by families and even doctors! Thankfully, his mom persisted and Guy survived. Today Guy is an accomplished and lovely young man, so outgoing, so active, someone his mom should be very proud of!

See photos of the event here!

Two other families stand out in my mind. One is Chris and Candi, a young couple, parents of a 16-month-old, who has severe hemophilia. In 16 months they have been through so much, and they handle it with grace, confidence and mastery. I wonder how such a young couple could be so empowered? They embody what empowerment means. Despite all the medical challenges they have come up against, they always find a way through it and learn from it. Also, I had a lovely three hour chat this morning with Mary and David, who have five children. Conor has type 3 VWD, which is severe. Again, they have learned so much, and never blaming others or cursing their fate; they simply and with dignity accept this life, learn from it and even find a lot of humor in their trials. As I often do when I visit with these families, I fly home feeling so lucky to have met them and to share a bit in their lives. And I hope we all meet again! Congratulations to Kerry and her team for a fabulous weekend!

Great Book I Read: Devil in the White City, by Erik Larsen. I always thought DisneyWorld was the embodiment of visionary thinking–until I read this book. The Chicago’s World Fair of 1893 became the spectacular dream come true at a time when nothing like it existed anywhere in the world. In a passion of patriotism and competition, it arose in the minds of two brilliant architects who wanted to outdo the French Exposition, where the Eiffel Tower was unveiled. With only two years, and hundreds of roadblocks including devastating storms, union strikes, and disease, somehow a magical “white” city arose from the mud of Jackson Field, and dazzled the world. What could compete with the Eiffel Tower? A man named Ferris stepped up with an idea for a huge spinning wheel. While this testament to the creativity and untapped potential of the human mind unfolds, the story simultaneously follows the depravity of the human mind, in profiling America’s first known serial killer. Larsen has a wonderful knack for paralleling stories and then bringing them together in the end as the stories historically collide. This book is simply amazing–learn about America during the industrial phase, the event that captivated the world, and a bizzare doctor/killer who stalked the visitors. And DisneyWorld? Well, it isn’t a coincidence that one of the carpenters hired to help construct the marvelous buildings was none other than Elias Disney, whose son Walt no doubt heard his father’s riveting stories about a magical kingdom! Four stars.