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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 […]

FitFactor: Stay Motivated for Fitness

October 3, 2017

For many of us, the biggest challenge to getting physical activity is just putting our minds to it. We all know how easy it is to talk ourselves out of something 鈥 and exercise is no exception. There are tons of ways we can keep our bodies healthy and active, so it doesn鈥檛 need to […]

Infusing Love: we: Door 1, Nicholas 0

September 27, 2017

Do you know those moments when you think, 鈥渁ll is right in our lives today?鈥 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 sue帽os鈥

September 21, 2017

Todos los a帽os celebramos el mes de la hispanidad en Estados Unidos (Hispanic Heritage Month en ingl茅s). 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 pa铆s. Los hispanos […]

Bioverativ Enters Joint Project With UK-Based Bicycle Therapeutics

September 19, 2017

  Bioverativ and a UK-based biotech company called Bicycle Therapeutics will work together to try to identify new therapies for hemophilia and also sickle cell disease.聽 The research will focus on using a new approach – called Bicycles – which the companies hope will lead to a new way to treat the blood disorders. Read […]

ACTION ALERT: Graham-Cassidy-Heller-Johnson bill

September 19, 2017

Your access to healthcare is at risk. The Senate is currently considering another bill to repeal the Affordable Care Act (ACA), sponsored by Sens. Cassidy and Graham. Congress only has until September 30th to act on this measure. We must work together to defeat this bill. Why should you take action? The Graham-Cassidy聽legislation would harm […]

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. 聽We all know pain and its many forms. But do we know how to move past the physical hurt and the emotional guilt? 聽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 鈥 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 […]

Alnylam Suspends Fitusiran Dosing due to Thrombotic Event

September 7, 2017

The following is an edited version of a press release from Alnylam Pharmaceuticals. To read the press in full, click here. Alnylam recently became aware of a fatal serious adverse event (SAE) that occurred in a patient with hemophilia A who was receiving fitusiran in the Phase 2 OLE study. As a result, the Company […]

FitFactor: Pre-Exercise Snacks to Boost your Workout

September 6, 2017

It鈥檚 5 o鈥檆lock on a weekday. You want to hit the gym, but you鈥檙e hungry and not sure if eating before you exercise will help or hinder your workout. What are the best foods to eat pre-workout? How much of them? How close to your workout time should you eat? Staying fit plays a big […]

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 鈥 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 m煤sculos y las articulaciones y, al hacerlo, reducir la frecuencia y la gravedad de las hemorragias. Hablamos con Michael Zolotnitsky, Doctor en Terapia F铆sica, […]

FitFactor: 7 maneras de mantenerse activo en invierno

August 31, 2017

Todos sabemos que trabajar en el invierno puede sentirse como una haza帽a imposible a veces. Sin embargo, una vez que comience a hacerla parte de su rutina regular, se convertir谩 en una tarea sencilla y ser谩 m谩s f谩cil de sostener a trav茅s de otras 茅pocas del a帽o cuando el clima no es tan duro. Mantener […]

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

August 31, 2017

  Si usted est谩 escapando del clima de invierno para algunos R&R por la playa, o dirigirse a la casa de un familiar para ponerse al d铆a, el viajar interrumpe su horario normal y puede hacer m谩s dif铆cil 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 鈥淟est We Forget.鈥 In my family鈥檚 view, raising a child with a bleeding disorder in today鈥檚 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: 驴C贸mo se compara su lista de alimentos saludables con la de un nutricionista?

August 29, 2017

  驴Cree usted que sus puntos de vista de lo que es saludable se alinean con las opiniones de los expertos? El New York Times public贸 un interesante art铆culo hace unos meses sobre la percepci贸n p煤blica de lo que es “saludable” y c贸mo estos han cambiado con el tiempo. El estudio tambi茅n destac贸 lo que […]

FitFactor: 隆Brindis para la buena salud … con t茅!

August 29, 2017

Ahora que el invierno est谩 en pleno apogeo y el clima fr铆o est谩 sobre nosotros, puede ser f谩cil olvidarse de mantenerse hidratado. Sin embargo, s贸lo porque no sienta sed, no significa que su cuerpo tiene tanta agua como lo necesita. Una manera f谩cil de hidratarse (y calentarse) es beber t茅. No tiene az煤car a帽adido como […]

FDA Grants Priority Review to Genentech’s Emicizumab for Hemophilia A with Inhibitors

August 24, 2017

Note: The following is an edited version of a press release from Genentech.聽Read the press release from Genentech聽in it鈥檚 entirety here. Genentech, a member of the Roche Group, announced today that the U.S. Food and Drug Administration (FDA) has accepted the company鈥檚 Biologics License Application (BLA) and granted Priority Review for emicizumab prophylaxis (preventative) as […]

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 […]

Octapharma USA Announces FDA Approval of NUWIQ New Product Strengths

August 23, 2017

Note: The following is an edited version of a press release from Octapharma USA.聽Read the press release from Octapharma USA聽in it鈥檚 entirety here. Octapharma USA today announced the U.S. Food and Drug Administration (FDA) has approved new product strengths for NUWIQ. The agency approved new single dose NUWIQ聽vial strengths of 2500, 3000 and 4000 International […]

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 鈥減racticing 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 […]

Leading Bleeding Disorders Advocacy Organizations File Hemophilia Discrimination Complaint Against Wellmark Blue Cross and Blue Shield

August 15, 2017

– Complaint argues Wellmark’s withdrawal from the Iowa marketplace discriminates against protected health conditions under the ACA, including hemophilia, and its disclosure of a patient’s personal health information violates HIPAA WASHINGTON, Aug. 15, 2017 /PRNewswire-USNewswire/ —聽The National Hemophilia Foundation (NHF), Hemophilia Federation of America (HFA), and Hemophilia of Iowa (HOI) filed a complaint today with […]

Spark Therapeutics Releases Preliminary Data for SPK-8011

August 9, 2017

Note: The following is an edited version of a press release from Spark Therapeutics.聽Read the press release from Spark Therapeutics聽in it鈥檚 entirety here. The company has disclosed preliminary initial data from the Phase 1/2 dose-escalation clinical trial for SPK-8011,聽a novel bio-engineered adeno-associated viral (AAV) vector utilizing the Spark200 capsid and containing a codon-optimized human factor […]

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鈥檓 afraid […]

FitFactor: Men鈥檚 Health 鈥 Simple Tips to Live By

August 8, 2017

Even though Men鈥檚 Health Month was in June, we can always take steps towards a healthier lifestyle no matter what time of year it is. In general, men experience poorer health and die younger than women in the U.S., according to the Department of Health and Human Services. The points below are important for all […]

Dear Addy: Project CALLS 2

August 8, 2017

Dear Addy, I鈥檓 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鈥檙e 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鈥檛 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 […]

Help Choose the Inscription on the Hemophilia Memorial

August 1, 2017

The Hemophilia Memorial in the National AIDS Memorial Grove in San Francisco, CA, will be a place where we can remember the people in our community who lost their lives to AIDS. This will be a place of remembrance, healing, and hope. The founding partners of the Hemophilia Memorial, HFA, the National Hemophilia Foundation, and […]


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