We thank all our donors for their generous support. Here are some of their stories.
As a physician, Dr. Richard Metz knows what it's like to be in a difficult situation.
Yes, Michael, his son has hemophilia. Dr. Metz has witnessed firsthand the issues — medical and logistical — that come with the disease. Yes, he's served on National Hemophilia Foundation board. He's seen the struggles and the triumphs of promoting interest in a condition that the public doesn't understand, or want to understand. Yes, for 25 years he's helped run the Southern California chapter. He's met hundreds of families who live with hemophilia, not because they're "brave," but because they have no choice. They have to as a matter of survival.
But when you ask Dr. Metz to name today's most important funding priority for hemophilia, he pauses. You can tell, it's a tough question. Then, thoughtfully, he begins to reply… "There's so much important work to be done, but we must support infrastructure," he concedes. As much as he'd like to say "research" or "advocacy," Dr. Metz knows that without operational funds, the rest couldn't happen.
Yes, it's a tough choice.
"Advocacy funding is very important," he reminds us. "Without the results of advocacy, my son would be in a very difficult position." As a former national advocacy chair, he knows how much presenting the needs of the hemophilia community in Washington can make in the day-to-day lives of those with the condition, like his son.
As a young man in his mid-twenties, by law Michael was allowed to be on Dr. Metz's insurance until his 26th birthday - even if he graduated college; even if he enrolled in graduate school; regardless of his hemophilia. But that's not how all insurance companies saw it. "When Michael graduated college our secondary insurance company tried to take him off our policy. NHF knew what to do to get the company to follow the law. We learned that we weren't the only ones they did this to. NHF moved the whole company into compliance" His years of advocacy in Washington paid off in a very personal way.
"And if 'lifetime limits' weren't removed, Michael would really be in trouble," Metz reminds us. "If not, when Michael moves to his own insurance in a few months, he'd already be reaching the maximum." Without the lifting of lifetime limits, hemophilia could be a greater financial burden for every family facing the disease and a financial disaster for thousands.
Despite these gains, Dr. Metz is all-too-aware that they could quickly go away. "The problem is that in the current political and fiscal climate these could be repealed at any time." So keeping up advocacy efforts funded is as important now as it was before the laws were changed. "We can't be complacent," Metz reminds us.
Moving from his role as parent to physician, Dr. Metz understands more than most that scientific research is just as important. His medical training and practice as a primary care physician gives him insights and access to the "inside" of advancements in treatments and the road to a cure. "I go to the research meetings and actually understand what they're saying" he says with a smile.
More importantly, he sees what's behind the remarkable progress of the last 50 years. "People aren't bleeding to death. They're living longer. There are recombinant factor products... all this is because of NHF's sponsorship of research." Being a board member with feet in both the patient and research community has its advantages, and its frustrations. "A cure is taking much longer than anyone expected. While the safety and administration of treatments is much better than years ago, it's clear that the issues are very complicated."
"Eventually we will have something," he assures.
As for the future? Metz sees opportunities for extended times between treatments, alternative methods for treatment, and new molecules that address a broader spectrum of causes beyond factor eight.
"One of the great contributions of NHF is the collaborative research meetings. Scientists and physicians present papers, trade ideas and come away with a new ideas and a renewed enthusiasm for the work."
Yet for all of the progress in research and advocacy, Metz still thinks that supporting basic operations of the Foundation is the most important place to put his funding. "None of the advances in research or progress in law would be possible if the organization wasn't there in the first place," he reminds us. "NHF made it all possible. NHF saves lives and makes those lives easier."
As for giving, Dr. Metz would love to see people stretch. "I'd love it if everyone could give more than they think that they can afford." When he thinks of the sacrifice others made, it reminds him of the progress made so far. "Just think where we'd be if others hadn't made their gifts. Then think of the future if we don't make ours."
It's a sobering thought. How many would have suffered or died if not for NHF's progress in advocacy, research and the organization to keep all of it going? What tough, no-win choices would have needed to be made by families and physicians?
Thankfully, with NHF there, the lives are richer, the future is brighter and the tough choices are few and far between.
Betty Jane Henry
Fred Ferguson, remembers his sister, NHF Founder Betty Jane Henry… and Betty Jane remembers NHF
Betty Jane never forgot NHF.
When Lee, Betty Jane's son died in 1963, she was heartbroken. Lee was in college at Chapel Hill, North Carolina. He went to school there to be close to a specialist in case he had problems, but it wasn't enough.
Betty Jane and her husband [Robert Lee Henry] left NHF not long after Lee died. The Foundation was a constant reminder of Lee - but they never forgot NHF. When Betty Jane passed in 2010 she left a meaningful gift to NHF in her will. NHF was always important to her.
Lee's hemophilia hit Betty Jane hard. While she never had other children, I think that the thousands of people she and Robert touched with the founding of the National Hemophilia Foundation can just as easily be called "Betty Jane's children." She was a determined woman. She learned that from her other great love: horses.
Betty Jane began riding three-gaited saddle horses at age 13. Believe it or not, she learned from refugee Cossacks! They fled Russia because of Stalin. By the time she was 19, Betty Jane was the youngest judge of the National Horse Show. Later she helped move the show to Palm Beach Florida. It was a life-long passion.
Betty Jane's riding experience showed her what determination could do. She discovered that Lee had hemophilia when he was two. There was no such thing as clotting factor. Within one month early in Lee's life, he went through 99 transfusions. That's when Betty Jane and Robert founded NHF.
Betty Jane wasn't shy. She asked everyone to help her work with hemophilia. I was even enlisted after I finished with the Army as a writer for Stars & Stripes. Back then it was tough to get anyone's attention about hemophilia. None of the newspaper's medical writers would touch the story. There was no science to point to.
By the time Betty Jane left her work at NHF, it was 20 years. It was making a major difference in the lives of people with hemophilia — and people were paying attention.
I remember that Betty Jane's last appearance for the foundation was in 2001, at the 50th anniversary meeting in Orlando. She really didn't want to talk. I had to convince her to come, but she gave a great speech.
As hard as it was for Betty Jane to recall her days with the foundation, she always knew that supporting NHF — even after her passing — was essential for the lives of people with hemophilia. I'm pretty sure the bequest was always in her will. I know that NHF was always her heart.
Matt and Mandi Chase, Peggy Metzgar, Amy and Chris Boggs with Harlen
Harlen and NHF - for grandmother Peggy Metzgar, both are growing commitments!
The timing was impeccable. I am newly retired and a brand new grandmother, both exciting and challenging. Even though I now find myself on a fixed income, I have an adorable grandson who has opened my eyes to the reality of hemophilia. I need to do what I can as much as I can. I became a National Hemophilia Foundation monthly donor. I am starting small to get the feel of my limited income, but plan to build it up in time. I have the money coming out of my checking account automatically each month, so easy to do.
I tell everyone that if you want to see change, you've got to commit. It's imperative to determine your priorities in life. Even something small makes a difference. So if I want to see changes in hemophilia - and I do - I'm committed to my monthly gifts.
It all started when I met Harlen. Before then, the last time I thought of someone with hemophilia was 60 years ago. It was a boy at church. He was gone before his sixth birthday.
So when I learned that my daughter Amy and her husband Chris were going to adopt Harlen, who had hemophilia, my thoughts leaped right back. I heard that so much had changed since that short life all those years ago. As Harlen's grandmother, I was determined to do everything to see that he and every child like him could live the long, eventful life that my church-mate never had.
I started with being available for Harlen.
After retiring from teaching, Chris and Amy built onto their house, a place for me to live, and be part of the family. I am fortunate to be close and able to help babysit when Chris and Amy are working. Amy is a Doula - assisting with births and photographer, too. She has unpredictable hours and I can help with Harlen when needed.
Like you'd imagine, adopting any child requires lifestyle changes, but with Harlen's hemophilia we had to make some special adjustments. Infusions were hard when Harlen was first born, but the people at Stanford Medical Center were great. After a while they gave Harlen an infusion port. Now we infuse him every other day while he just sits in a Velcro holder and watches TV!
But Harlen's like any 20 month old: really active. What I used to do with my kids won't always work with him because of his condition. As I look ahead, I know he'll keep me on the go - and that includes joining my family on the Bay Area Hemophilia Walk; he didn't come with me. I went with them.
So much has changed since I saw the boy with hemophilia at church almost 60 years ago. If he were around today, he'd have a future - like Harlen does. I want everyone to know that a brighter future for Harlen and anyone with hemophilia starts when people like us stand firmly behind NHF. Volunteering, Walks and gifts - especially monthly gifts - makes sure that research and treatment can get the funding they need.
I'm so thankful that Harlen came into my life. I don't know what I would do without him. He has a wonderful circle of family and friends that feel the same way. Chris and Amy feel so amazingly blessed and we all are extremely thankful for NHF!
We are not alone and we have so much hope for the future.
Cathy and Alan Bombardier
To Cathy, Normal is what normal does.
We contribute monthly to NHF because we wanted to give back. There have been huge strides in treatment since Chris was born. Despite his hemophilia, Chris is a normal kid. (Okay. I'm his mom, so I think he's better than normal!)
If you saw Chris now, or even 15 years ago, having fun with his friends, swimming at the pool, playing baseball, you may have said "there goes a normal American kid." You'd never imagine he had any problem - especially hemophilia.
I think that being "normal" is every mom's goal for their child - especially if their child has hemophilia. The people at the University of Colorado Hemophilia and Thrombosis Center seemed to know that, too. Early on they gave us "permission" for Chris to be a normal kid. They told us that it was okay for Chris to swim, play baseball, ski, mountain bike and even mountain climb.
The problem is that "normal" never has or ever will describe Chris. It was challenging raising a child with hemophilia, especially when Chris was so adventurous - and still is today.
All my gray hair? It's from Chris!
I added some when I heard that he was going to climb the Seven Summits - highest mountain on each continent! (He's already done two!) He's had a passion for baseball since age four, and he was named co-captain of his college team. He's on the board of two national nonprofit groups at age 27. I don't think any of that's "normal," for a hemophiliac, but Chris does.
The whole idea of "normal" was hard for Chris. He talks about it on his web site, Adventures of a Hemophiliac. "Life wasn't easy or normal. I hid my hemophilia for a very long time thinking that it made me different from everyone else, and somehow less capable. This couldn't be further from the truth."
As part of his work with "Save One Life," [an organization dedicated to helping children with hemophilia in developing countries] Chris speaks to groups in the countries where he climbs, and to kids and families at local hemophilia events. Chris inspires kids with hemophilia so they can do what they never thought they could do. He wants their lives to be as normal as his.
The support for people with hemophilia here in Colorado has come a long way since Chris was born. Today, every child has a chance to live a normal life, despite their condition.
For us, our monthly gifts to NHF have been as normal as having Chris as our son.
Jimmy knew a good investment when he saw it... in Gabe, and NHF.
(As told by Jim's sister, Lana Wilson, Gabe's aunt.)
Jimmy believed in investment. He just loved Warren Buffet. If Warren Buffet ok'ed it, Jimmy would do it. And like Buffet, Jimmy was in his investments for the long term. When Jimmy found a good thing, he stuck with it... just like he did with his bequest to the National Hemophilia Foundation.
Jimmy was my brother and the oldest child in our family of 13 children. He was born in Indiana in the thick of the Great Depression. Being the oldest meant responsibility - and with it, working in the family business: dry cleaning. It was tough, hot work. It gave him a great work ethic. But by the 1950's it was time to strike out on his own. He joined the US Navy.
I'll never forget, when Jimmy came home on leave, he'd bring presents for everyone. He was such a giving person.
It was really too bad that Jimmy outlived his own children. That may be why he took a special interest in our nephew, Gabe. Jimmy thought that hemophilia was scary and wanted to help in any way he could. We are so grateful.
Jimmy had a knack for business and knew how to earn money. It all started when he left the Navy. He opened his own dry cleaning business, and then went into real estate.
Having the businesses let him do all sorts of things - including leaving NHF in his will. Jimmy saw it as an example to Gabe. He took a real interest in Gabe's progress. Jimmy constantly told Gabe and others that he wanted to do something to help end hemophilia. Jimmy was a man of his word - he put his money where it was important to him - right to the end.
Like all of us, Jimmy was amazed that hemophilia treatment had come so far. He was impressed with how Gabe handled his condition. At only 10 years old, Gabe is active and self infuses. His hemophilia hardly slows him down - or keeps him out of a group. Gabe's a competitive swimmer. When he gets a joint bleed, there's no problem heading to the local Hemophilia Treatment Center. He knows that's what he needs to do. We are all so proud of him.
When Jimmy passed away, he remembered NHF in his will. His gift was made in honor of Gabe. He wanted to teach Gabe how important giving was to him, and how it could be to Gabe.
Jimmy knew a good investment when he saw it... in Gabe, and NHF.
Mary Macdonald with husband, Sam
Nobody believed that I had hemophilia!
I give to NHF regularly and have it in my will because of how its work relieves the suffering of thousands. Before Factor VIII became available, hemophilia was a severely painful, crippling condition. In my opinion, no one should have to suffer such pain. You lived with the fear of bleeding every day.
You see, when I was born in 1926, hemophilia was considered a condition occurring in the royal families of Europe. Only males were born with the condition, therefore (so the wisdom went) I couldn't possibly have hemophilia! But when I look back, it's clear that something was wrong.
The first major episode that I remember was when I was 10 years old. Our local dentist extracted a decayed molar. The bleeding didn't stop for over week. After that, nothing symptomatic occurred until I started my periods. They were very difficult to live with - lasting at least seven days.
After graduating high school, I entered the three-year nursing program at a local hospital. In those days, it wasn't necessary to sign permission for surgery. Our local surgeon decided I needed tonsillectomy - and thus it was performed. I hemorrhaged profusely for a week. Then I was readmitted for more surgery. My hemoglobin was unreadable and I was so weak that it was difficult to walk without assistance. Nevertheless, my bleeding was finally controlled, and I entered the nursing program, and graduated in 1946.
In 1951 my husband and I were blessed with a baby girl. After delivery I bled terribly for several weeks. Our son was born two years later. I bled tremendously again, but to make matters worse, so did my son! Finally, my pediatrician referred us to University of Maryland Hospital. Dr. Sacks diagnosed my son with severe hemophilia. I always had so much guilt. I blamed myself for causing so much pain to a child I loved more than life.
Our life changed completely when Factor VIII became available. Research money made places like the Georgetown University Hemophilia Treatment Center in Washington, DC available to us. It's a blessing. Dr. Craig Kessler, its director, and Nurse Carolyn Francis, its program coordinator, give wonderful care and much-needed service to the hemophilia community. Arrangements were made for me to have genetic testing at the clinic. I learned that I too have hemophilia (Factor VIII). A few years later, I needed my gall bladder removed. Carolyn made the arrangements. I received Factor VIII - no bleeding, no problems.
I'm now 86 years old, my son is 60. We made it! I consider this a miracle. We are so thankful. I know that my gifts now and my bequest later will stop others from suffering, too.