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Dear Addy: Life Insurance

Dear Addy, I’m applying for life insurance, but I’m either ineligible or being told I have to pay three times the normal rate because I have hemophilia. Is this typical with a rare disorder, and is there anything I can do about it? Signed, Planning Ahead Dear Planning, Unfortunately, as you’ve found, your health status […]

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Infusing Love: A or B (Arthritis or Bleed?)

Back in the “old days” before prophylaxis (prophy), hemophiliacs were treated on demand when they had a bleed. Max is just old enough to fall into that category so he didn’t switch to prophy until he was five years old. By then he had already had enough bleeds in his left ankle that the damage […]

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Infusing Love: Life Imitates Art

When ABC premiered, “Speechless” last fall, I wasn’t sure if it would meet my expectations. Would it show special needs parenting and family life in a realistic, often sarcastic way, or would it have the feel of an afterschool special? I’m happy to say it’s readily become one of a handful of shows we watch […]

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Fit Factor: Step up your Grilling Game this Summer

With summer just around the corner, we’ll soon be able to pull out those grills for our favorite outdoor meals. Whether you’ve got a taste for meat, fish, seafood, tofu or vegetables, grilling is one of the healthier cooking methods. Cooking food on a grill allows excess fat to drip away from the food, without […]

Dear Addy: Symposium

Dear Addy, I attended Symposium in April and gained a lot from the advocacy sessions. I want to incorporate what I learned at Symposium into my regular routine. What recommendations do you have for making advocacy an everyday activity? Signed, Maintaining the Momentum Dear Momentum, Thanks for attending HFA’s Symposium last month in Providence. It’s […]

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Infusing Love: Changes

As parents of a nearly twenty five year old son, my husband George and I have enough to write a book about being the parents of a child with severe hemophilia B. There are so many ups and downs raising Michael over the years. Our most recent up and down has been the transition of […]

Volunteer Spotlight: Geared Up to Health, Wellness & Community

The Terry Lamb Health and Wellness Award is award is for exceptional commitment to supporting HFA in its national efforts to encourage health, nutrition and wellness behaviors in the bleeding disorders community. Terry Lamb had severe hemophilia, was an active member of the bleeding disorder community, and was a respected leader. Terry grew up in […]

Volunteer Spotlight: A Community Builder

Each year, at the HFA Symposium, we recognize the tremendous volunteerism in the bleeding disorders community. The Michael Davon Community Service award is for extraordinary service to the community via one’s national or global volunteerism and charitable giving. Michael Davon was a New Englander who was integral to the inception of HFA. He was described […]

Volunteer Spotlight: The Future is Bright

Rose Bender is a 20-year old sophomore at Yale University living with severe hemophilia A. She was 9 months old when her family first heard about hemophilia. Her bleeding at the time was so severe that she needed a whole blood transfusion, cryoprecipitate, and fresh frozen plasma just to stay alive. Volunteering and giving back […]

Volunteer Spotlight: Blood Brothers & Tireless Advocates

The bleeding disorders community has been built on the tireless advocacy work of volunteers. Today, we recognize two gentlemen and Blood Brothers who were mentors, friends, and inspiring advocates. We were honored to recognize Ellis Sulser and John Reed during our recent Symposium. The Ron Niederman Humanitarian Award recognizes extraordinary and inspirational service to the […]

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Assisting and Advocating for the Bleeding Disorders Community