A “Bloody Good” Fundraiser

The Cast of Clue Live! with Ron and Robbin

I travel a lot, and so often miss the events that happen in hemophilia close to home. So I was thrilled to know I could attend the New England Hemophilia Association (NEHA)’s fundraising event this past weekend. And it wasn’t a golf tournament (never touched a club in my life) or a cooking class (disaster! Cooking, me?). It was murder.

Murder? Yes! A real-life game of Clue, based on the board game and movie. The movie is hysterical (thanks to actor Tim Curry) as our evening would prove to be!

Mr. Green and Miss Scarlett, who I am sure are innocent

Doug and I drove to a stunning mansion, just south of Boston, that on a cold dark night could really double as a creepy old haunted house. The massive entrance was crowned not with a statue of an angel, saint or cross, but of a devilish-looking, stone ram’s head, with blank, staring eyes. Inside, a wide-angle view of a spiraling, carpeted staircase, chandeliers, portraits of deceased notables, mounted hunting trophies… and the friendly NEHA staff ready to register us.

There was wine, beer, plenty of great company in seeing the families I’ve known for ages, and meeting some new ones. After a social hour, we had a delicious buffet as members of the cast started to appear, in character, sporting British accents. Professor Plum, Miss Scarlett, Mr. Green, Mrs. Peacock, my favorite—Colonel Mustard, Mrs. White, and the Detective from Scotland Yard. But let’s not forget Mr. Boddy, who unfortunately could not make dinner… because he was dead!

Who did it? That was our task. We had to search the mansion for clues to the murderer, and find the murder weapon: a pistol, lead pipe, candlestick, rope, wrench, or knife. It was fun to be with the cast while we prowled about looking under tables, behind curtains and up fireplaces! Everyone got into the act.

This was a fun fundraiser, but it’s also serious business. There are deep concerns in our community about sourcing funds to keep the nonprofits going. Budgets are tighter as companies wait on new drug developments to see how market share will be affected. At HFA in April, all the talk was about how funding was getting harder to secure. And I just noticed this week that NHF’s agenda for the October meeting has a lot of sessions on fundraising.

Jill with Colonel Mustard: did he do it?

Well, Rich Pezzillo, executive director and person with hemophilia, and team did it right this time. They raised about $10,000 in one evening, all the while giving everyone a great time, a silent auction, and an arrest!

And something new: a couple at my table was unfamiliar to me so I asked if they had a child with hemophilia. No, they knew nothing about hemophilia. They saw a brochure for the event at their local bank, wanted a fun night out, and decided to attend. They were amazed at how much they learned about hemophilia. And they left with new friends and a silent auction item! (But those Red Sox tickets were mine)
So fun + prizes + game (+ murder) + out-of-the-box-thinking + inviting strangers = outstanding event and fundraiser.

Rich Pezzillo, talented ED and fundraiser!

Congratulations to Rich and his team for a great event. So what if it was a murder? It was a bloody good fundraiser and a bloody good time.

Click to see all the Gallery photos of the event!

To learn more about Clue Live!

Gene Therapy: Lookin’ Good!

I happily drove an hour to Westwood, Massachusetts to attend the New England Hemophilia Association’s Springfest, a gathering of local hemophilia families and the companies and medical people who serve them. It was a glorious, sunny day and a wonderful event. 
Val Bias, CEO of NHF, attended to present an overview of NHF’s programs and also how funding is raised and where it is spent. Here are some stats:
• There are 57 full time and part time staff at NHF over 10 states
• There are 8 regions for HTCs now, down from 12
• NHF has a PDF you can download called “50 Steps to Cultivating Donors”
• 50% of the NHF’s board of directors are not related to hemophilia
• 52% of its budget comes from pharma 
Val stressed to the audience to get involved locally, and to consider joining the NEHA board. He made a compelling plea and is an excellent speaker. Many people told me later they thought Val is a gifted presenter and a wonderful leader for our community. 
Next up was a great presentation on gene therapy and new products coming soon by Dr. Ellis Neufeld of the Boston Hemophilia Center. Dr. Neufeld did an amazing job of taking highly complex material and breaking it down for us. Some highlights:

• The St. Jude gene therapy trial that has been in the news: only 6 FIX patients in trial, using “gutted” virus (no capacity to reproduce).
• Of 6, only 1 really took to it but he got higher ALT (liver
function measurement). 
• Problems with the study: not enough data, immune response a threat and you can’t be retreated
as you will have an immune response. 
 • Long acting factor: many companies working on this. Everyone has different half-lives; children have shorter
ones than adults. So how long is long? New FIX drugs could be 3-5 times longer acting, meaning you might treat once every 10-14 days?
• What will price be of the longer acting drugs? What is the worth for a theoretical improvement of
life? No one yet knows.

(Our next issue of PEN in May examines all these in depth: be sure to download it!)

Dr. Neufeld was very positive about current gene therapy efforts. He made us all laugh by saying that our community has been promising us gene therapy roughly in every ten year cycles, but this time, he truly feels there is a great chance we will find it.
Just before lunch, we had panel presentations from all the pharma and specialty pharmacy reps on their patient assistance programs, delivered all above the growing din from the Bar Mitzvah next door!
These were all great presentations, and we had an attentive audience. I saw so many of my friends in hemophilia, and truly enjoyed myself. I hope you can all attend a local hemophilia event and take part in your community! We had a rap session with the moms, and one among us had an 8 month old. We all remember the feelings of when our babies were diagnosed. We felt for her. Everyone rushed to welcome her, praised her for attending, and offered email addresses and phone numbers. It never fails to amaze me how tight our community is. We are friends, and family, for life. 












Great Book I Just Read
Murder in the High Himalaya: Loyalty, Tragedy, and Escape from Tibet
by Jonathan Green
This is a rare book that provides multiple levels of reading, on history, ethics, exposé, culture, politics and an unforgettable story of a young girl’s perseverance, determination and tragic legacy. I love real life adventure and survival books, especially about mountain climbing and/or history, and also books about how one person can change the world. This book has it all. On September 30, 2006 a cruel and thoughtless murder of a 17-year-old Tibetan nun (just a girl truly) by Chinese border guards triggered an avalanche of scrutiny in the press, world agencies, political leaders–and in the consciences of the Western mountain climbers on a paid guided climb who watched in horror. Kelsang Namtso was trying to escape Tibet via the mountain Cho Oyu when she was gunned down in full view of climbers, one of whom videotaped it. The tape went viral—the first time human rights violations against the Tibetans had been filmed—and the rest is history. This book tells this amazing story in gripping and often exquisite prose (much like Jon Krakauer) and provides powerful parallel stories of Kelsang and the mountain climbers, which later intersect dramatically and make history (much like author Erik Larsen). You will be amazed at the courage of this 17-year-old, and at the response by those who witnessed her death. Green’s compelling narrative will teach you much about Tibet, how it has suffered under Chinese rule, and how the West has looked away until one lone video clip, still available on YouTube, shamed us into action. Green raises excellent questions that beg an inward look at our own souls, and portrays Tibetan lives without freedom that make us instantly cherish our own freedom. A must read. Four out of five stars.

Camp: Dancing, Swimming, Learning, Bonding


Yesterday was so busy at camp I didn’t have a second to blog. The day started with some wake-up exericses on the lawn, in this case a dodge ball game. All the campers and staff are wearing T-shirts with the camp name on it–“Yo si pudeo!” After breakfast, the campers listened to a lecture by a lively orthopedic surgeon who used Bob the Puppet (renamed “Pepe”) to demonstrate joint damage in a kid-friendly way. Then off to the pool! Wow, did the children come alive! All campers are divided into groups, who give themselves team names (like the Stars, or Alpha-Omega), chaperoned by teens with hemophilia, who used to be campers themselves. And they were wonderful! Like big brothers to their little “hermanos” with hemophilia.

After lunch came another lecture, then arts and crafts, with board games for those who opted out of arts and crafts. Then practice of the big event–a talent show! And what a time it was. What imagination! Each team presented a skit, something to do with hemophilia and empowerment. No one told them what to do. They just instinctively wanted to do skits that showed how they were empowered and who anyone could be empowered. Most of the skits were hysterical, showing comical situations and exaggertaed characters. But one took a serious turn when it showed a father coming home drunk and striking his child with hemophilia, the mother helpless. Domestic abuse is a huge problem in Latin America and the boys deftly integrated this social problem with hemophilia. Prizes were awarded to everyone, and then the real fun began. Dominicans are expert dancers and the DJ (Horatio, former camper) pumped out some wild meregue and salsa for everyone to dance to. Not even hemophilia and arthropathy can keep these boys from dancing. We had a conga line, contests, and everyone–from patient to staff to hematologist and nurse–got in on the fun.

Today was a bit more subdued. At least no bleeds as a result of the dancing, thankfully! The camp celebrated a Catholic Mass in the pavillion after breakfast, followed by heart warming testimonials from the older boys about the role faith plays in their life with hemophilia. They spoke directly to the younger boys, instructing them to pray and keep faith even in the darkness of a bad bleed. Later, everyone went for another swim, and then had lunch. The weather was beautiful, sunny and hot.

Though camp was only two and a half days, close bonds were formed, even for the new boys. We enrolled more boys into Save One Life, to help them financially. Tomorrow we will visit some of the boys in their humble homes.

The bus arrived and everyone departed back to Santo Domingo, a quick jaunt, to congregate at the Robert Reid Cabral Hospital and to await some anxious parents. Happiness shown on the faces of both parents and child as they were reunited. The boys were armed with toys donated from the New England Hemophilia Association, and infused with factor donated from Project SHARE. Does it get any better then that? It was a great camp; it seemed so effortless, but tremendous planning and coordination goes into a project like this. We will miss all the boys dearly as another year passes. Hasta el proximo ano !