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Community Voices

Dear Addy: ABLE Accounts

November 13, 2017

Dear Addy, Are there ways for my teenage son to save money for college, without endangering his health coverage? My son is currently enrolled in Medicaid under our state’s Katie Beckett program for children with long-term disabilities. Signed, Savvy Saver Dear Saver, Here’s one option you and your son may wish to explore: opening an […]

Infusing Love: Opening Our Hearts & Home

November 9, 2017

When I got married 19 years ago, I never thought I would be a foster parent to over 40 children with special needs. It never occurred to me that I would have the blessing of being a stay-at-home mom for 14 years. I never would have thought I would end up with six forever children […]

FitFactor Video: Swimming: A Safe and Efficient Workout

November 6, 2017

Swimming is often recommended as an ideal form of exercise for people with bleeding disorders for a few different reasons. To begin with, swimming allows one to strengthen their muscles in a way that doesn’t put weight on the joints, and therefore reduces the likelihood of bleed due to impact or pressure. It also enables […]

Young Adult Podcast: Grocery Shopping on a Shoestring Budget: How to Choose Healthy Foods without Breaking the Bank

November 3, 2017

By offering additional resources and education about the benefits of self-care and exercise for young adults, we hope to inspire a lifetime of healthy choices and habits! Our guests on this podcast are Kathryn Clark, a retired dietician, and Eric Burgeson, an active young adult with hemophilia. Kathryn and Eric iscuss ways to keep costs low at the grocery store […]

Young Adult Podcast: Maintaining Motivation: Creating Habits for a Lifetime of Fitness

November 3, 2017

By offering additional resources and education about the benefits of self-care and exercise for young adults, we hope to inspire a lifetime of healthy choices and habits! Our guest on this podcast is Karen Sullivan, retired professor of Health/Fitness at Marymount University. Tune into hear Karen discuss how to build sustainable fitness habits and how to get back on […]

Infusing Love: Caregiver to Caregiver

November 1, 2017

If you look up National Caregiver’s month on your computer, you will find several items from the Caregivers Action Network (CAN) before anything else. If you look through the stories, tips and suggestions you will see that most of them relate to adult children caring for parents. You can find the 2016 proclamation from President […]

Dear Addy: 2018 Open Enrollment

October 30, 2017

Dear Addy, I’m applying for health insurance for the first time this open enrollment period. With a bleeding disorder, what should I look for in an insurance plan? Signed, First-time Subscriber Dear Subscriber, The Open Enrollment Period is a timeframe each year when health insurance plans or HMOs (health maintenance organizations) are required by law to accept applications […]

Infusing Love: An Unexpected Lesson

October 25, 2017

I lost my job on a Monday. The following Tuesday, I was making the hour-long trek to our HTC for bi-monthly prophy for my 15 month old son, Ben. I had a lot of time to think about what had just happened, what in the world I was going to do, and where to go […]

Infusing Love: Watching An Advocate Bloom

October 19, 2017

My 11-year-old, Natalie, is not your typical 11-year-old. She is whip smart, savvy, and mature beyond her years. I suppose that comes with being the youngest of three siblings. You have to wise up when your older siblings are trying to pull one over on you since the day you were born. Natalie has recently […]

Dear Addy: Health Insurance for Young Adults

October 15, 2017

Dear Addy, My son with hemophilia is about to turn 26 and will need to find his own insurance plan. As a parent, how can I help him navigate this process? Signed, Always-an-Advocate  Dear Advocate, This is an important but complicated task. HFA created the following infographic as a tool for walking through the different […]

Infusing Love: Brotherly Bonds

October 11, 2017

It has taken me six years to groom the perfect person to give my youngest son, Laithan, his factor. When Laithan received his port my husband started out being Laithan’s holder and I could never transition him to the other side of the needle. I don’t think I wanted him to do it either, since […]

Infusing Love: In This Moment

October 4, 2017

It’s hard to envision what life is going to look like for my little Maddox when he enters preschool or elementary school in a few years. Right now I focus on the moment and each day as Maddox gets older. He had his first birthday last week and off he went. He took his first […]

Infusing Love: we: Door 1, Nicholas 0

September 27, 2017

Do you know those moments when you think, “all is right in our lives today?” We have had a few of those moments recently. We had a horribly tough year in 2016. It just seemed that whichever way we looked, something rough was happening to us or our extended family members. 2017 has been a […]

Infusing Love: Sigue tus sueños…

September 21, 2017

Todos los años celebramos el mes de la hispanidad en Estados Unidos (Hispanic Heritage Month en inglés). El mes de la hispanidad comienza en 15 de septiembre y termina en 15 de octubre. Este mes es para celebrar las tradiciones, celebramos la cultura y todos los logros de los hispanos de este país. Los hispanos […]

Dear Addy: Teaching Independence

September 19, 2017

Dear Addy, I have two preteen kids with bleeding disorders and I want to instill in them independence with respect to their care. Do you have any advice on ways to build this into our routine? Signed, Introducing Independence Dear Independence, This is a great question to be asking now, as transitioning to independence is […]

Infusing Love: Overcoming Pain

September 13, 2017

  When I hear the word “pain” I immediately relate.  We all know pain and its many forms. But do we know how to move past the physical hurt and the emotional guilt?  The reality of our world is that pain is a part of life – we can dwell in suffering or we can […]

Infusing Love: The Holidays Are Coming

September 8, 2017

The holidays are right around the corner. Ask any mom of a child with hemophilia and we will all attest to the same thing – with holidays come bleeds! There is no medical explanation for this crazy phenomenon, but sure seems true for many. For us, it always started with Halloween and lasted until the […]

Dear Addy: Sports

September 4, 2017

Dear Addy, My son has hemophilia and loves to play sports. He is going into 6th grade this fall and wants to join the soccer team. How do I set realistic expectations with him and his coach? Signed, Soccer Mom Dear Mom, You are not alone in your concerns – this is a common question […]

FitFactor: Las ventajas de ir al cuarto de pesas

August 31, 2017

  El entrenamiento con pesas juega un papel importante en mantener su cuerpo en forma y saludable. Es una gran manera para las personas con trastornos de sangrado para fortalecer los músculos y las articulaciones y, al hacerlo, reducir la frecuencia y la gravedad de las hemorragias. Hablamos con Michael Zolotnitsky, Doctor en Terapia Física, […]

FitFactor: 7 maneras de mantenerse activo en invierno

August 31, 2017

Todos sabemos que trabajar en el invierno puede sentirse como una hazaña imposible a veces. Sin embargo, una vez que comience a hacerla parte de su rutina regular, se convertirá en una tarea sencilla y será más fácil de sostener a través de otras épocas del año cuando el clima no es tan duro. Mantener […]

FitFactor: ¡Consejos para tomar su rutina de ejercicios de vacaciones con usted!

August 31, 2017

  Si usted está escapando del clima de invierno para algunos R&R por la playa, o dirigirse a la casa de un familiar para ponerse al día, el viajar interrumpe su horario normal y puede hacer más difícil permanecer en la cima de su rutina de salud y ritmo de ejercicios. Hacer ejercicios es a […]

Infusing Love: Siblings Need History Lessons Too

August 30, 2017

  At HFA, we have a core tenant and motto of our organization. It is “Lest We Forget.” In my family’s view, raising a child with a bleeding disorder in today’s world means we have the responsibility of determining when and how we help our children to learn and understand the history of our community. […]

FitFactor: ¿Cómo se compara su lista de alimentos saludables con la de un nutricionista?

August 29, 2017

  ¿Cree usted que sus puntos de vista de lo que es saludable se alinean con las opiniones de los expertos? El New York Times publicó un interesante artículo hace unos meses sobre la percepción pública de lo que es “saludable” y cómo estos han cambiado con el tiempo. El estudio también destacó lo que […]

FitFactor: ¡Brindis para la buena salud … con té!

August 29, 2017

Ahora que el invierno está en pleno apogeo y el clima frío está sobre nosotros, puede ser fácil olvidarse de mantenerse hidratado. Sin embargo, sólo porque no sienta sed, no significa que su cuerpo tiene tanta agua como lo necesita. Una manera fácil de hidratarse (y calentarse) es beber té. No tiene azúcar añadido como […]

Infusing Love: A Back to School Shopping List

August 23, 2017

Buying school supplies prior to the beginning of each school year is a rite of passage. Until my kids got to high school, I was more than happy to take advantage of the school supply kits offered by our school. Even so, each year, I still have to make multiple trips to the store for […]

Dear Addy: Step Therapy 2

August 21, 2017

Dear Addy, My insurance company is trying to make me go through step therapy to get access to the treatment product I need! Are they practicing medicine without a license and is it illegal? Sincerely, Feeling Pressured Dear Pressured, There is no clear legal answer to your question: is an insurer “practicing medicine without a […]

Infusing Love: Knowing How and When to Advocate

August 17, 2017

This past May our family was invited to attend the HFA Patient Fly-In to Washington, DC. The patients and caregivers were briefed on the talking points the evening before our scheduled meetings with our Senators and Representatives. As you know, health care is a hot topic and there were many talking points that needed to […]

Infusing Love: Pondering Ports

August 9, 2017

  With a new diagnosis of hemophilia my world was turned upside down. What’s only been 4 months since Maddox was diagnosed feels like a year or two. I feel like I’ve grown so much in just a few months. I have put my life vest on and jumped right in. While, sometimes I’m afraid […]

Dear Addy: Project CALLS 2

August 8, 2017

Dear Addy, I’m having trouble with my health insurance, which is making it difficult to manage my bleeding disorder. What can I do to make my concerns heard? Signed, Help Wanted Dear Help, Thank you for reaching out to HFA about the trouble you’re having with your health insurance. You are not alone in your […]

Infusing Love: The Writing is on The Chalkboard

August 2, 2017

As I walk through the aisles of our local office supply store, I can’t help but to get a tinge of sadness. The smell of fresh paper, pens, pencils, and crayons are enough for this former teacher to break down right there in the middle of Office Depot. Not that I am unhappy doing what […]


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