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Member Spotlight: Hemophilia Alliance of Maine

Of all seemingly innocuous topics, I was recently surprised to find hiking caught in the middle of a most persnickety online debate. In one thread, athletic enthusiasts hastily poured their auto correct failing hearts out over how “The Hike” should be categorized: a recreation or a sport? While the comments proved a riveting form of […]

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Responding to Challenging Circumstances

By Sadaf Ahmad HFA’s Helping Hands Program is an urgent financial assistance program that provides aid to individuals and families to assist in crisis situations with expenses such as housing, transportation, and utility bills. HFA conducted a survey of Helping Hands (HH) applicants to understand the program’s impact and assess the experiences of the most […]

Mom' Blog_Emily_Logan

Infusing Love: As I See Him

It has been a long day; an immeasurably long day. We spent it at the Hemophilia Treatment Center (HTC) in an attempt to rid my little one’s body of a persistent inhibitor. It was long. I am tired. My house is a mess – I do not remember the last time my kitchen floor was […]

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Dear Addy: Marketplace

Dear Addy, I work for a small business. Health insurance through my company for my family costs $1,000 a month. At the end of the year the monthly premium will jump to $1,300 a month and we can’t afford to pay that much. On top of this, for emergency care and hospitalizations we have to […]

Don’t Be Afraid To Ask Questions!

As a patient or a parent of a child with a bleeding disorder, you may, at some point in time, have the opportunity to make a decision to participate in a clinical trial for a new factor product, a research project, or the genotyping project. This decision should not be taken lightly. All your questions […]

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Running/Walking – Safety (video)

Running and walking are often deemed safe activities for individuals with hemophilia. They are both great forms of exercise and just about anyone can do them, all you really need to get started is a good pair of sneakers. However, running and walking are not without risk. In this second video of our running/walking series, we […]

Mom's Blog_Juanita & Jon

Up, Up, and Away!!!

By Juanita Fish When my son was 9 years old, I begrudgingly sent him to camp for the first time. It was a pivotal moment for my family! When Johnathan (Jon) was born, I became the mother of a child that would need to be raised differently than others, at least physically. Eight months later, […]

FitFactor Run Video

Running/Walking – Getting Started (video)

Running and walking are often deemed safe activities for individuals with hemophilia.  They are frequently recommended because they don’t have take a lot of time or cost a lot of money, but can make a big difference in how you feel and in your overall health.  Remember, healthy bodies bleed less! In this first video of our running/walking series, we introduce […]

Moms Blog_Maryann

Infusing Love: Self Reliance To the “Max”

I’ve been thinking a lot about Max and how he gained his hemophilia independence.  He was 6 the first time he self-infused.  He did it at our chapter’s family camp with the guidance of some amazing older mentors.  In those days things weren’t nearly as organized as they are now; no gaggle of nurses around […]

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The Red, White & Blue Of Hemophilia Independence

As we celebrate America’s Independence Day, nothing says it more than the wearing of red, white and blue, a parade and a night of fireworks. Self- infusion is Independence Day for kids with bleeding disorders.  They wear their medical alert bracelets, they go to camps, they practice – and sometimes struggle – with veins that […]

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