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Infusing Love: Unstoppable Resilience

November 26, 2019

My dad taught me how to box and dance salsa; with these two skills鈥攕alsa and boxing鈥擨 learned how to defend myself and to never give up. I learned to always take notes on movements and to dance my way to resilience. Have you ever had the biggest hiccup that you just couldn鈥檛 get rid of? […]

Infusing Love: Keys to the Kingdom

October 30, 2019

Over the last several years, I have been focused on the idea of transition and independence as Thomas speeds through his adolescence. While he will always be my little boy, I simply have to face the facts that this six-foot, 16-year-old will be making decisions for himself and his healthcare in short order. There have […]

Infusing Love: Stand Up to Bullying

October 23, 2019

  October is National Bullying Prevention Month. For older moms, we think of bullying happening at school and after school in the neighborhood. But the unfortunate reality is that there is now the addition of bullying at home through social media and texts.聽 Historically, many have referred to bullying as a 鈥渃hildhood rite of passage.鈥 […]

Genentech Issues Statement on Hemlibra Particles; MASAC Responds

October 7, 2019

Today, Genentech provided the following statement regarding reports of particulate matter in vials of Hemlibra. You can read Genentech鈥檚 statement below, and can read comments on the statement from NHF鈥檚 Medical and Scientific Advisory Council (MASAC). The events of the past several months, including today鈥檚 announcement by Genentech, underscore the importance of the joint Safety […]

Mes de la Herencia Hispana: La Intimidad en Pareja

October 7, 2019

Por: Andy Anderson Para 驴Mujeres con trastornos hemorr谩gicos? 驴Parejas donde los hombres tienen trastornos hemorr谩gicos? 驴Padres sin trastorno hemorr谩gico pero un ni帽o o ni帽a que s铆 tiene un trastorno hemorr谩gico? Es su derecho decidir c贸mo, cu谩ndo, por qu茅 y a qui茅n divulgar detalles sobre su estado de salud; esto incluye amistades, as铆 como relaciones rom谩nticas […]

HFA & NHF Discuss Bayer Recall with FDA

October 7, 2019

HFA and NHF are pleased to share a brief update with the community concerning a recent meeting we had with the FDA as well as a number of additional resources that the FDA provided after the call.聽 HFA and NHF will continue to update the bleeding disorders community as any further information develops. Please note […]

Infusing Love: La comunicaci贸n con nuestros hijos e hijas

September 25, 2019

  Tener una buena comunicaci贸n con nuestros hijos e hijas no siempre es f谩cil.聽 Para esto es imprescindible saber estilos adecuados de comunicaci贸n para conocer a nuestros reto帽os m谩s, para saber lo que piensan, para entenderlos m谩s y para saber c贸mo se sienten.聽 De hecho, la comunicaci贸n entre padres e hijos es esencial para fomentar […]

Mes de la Herencia Hispana: Salud Mental en Hombres Latinos con Hemofilia, una Realidad Invisible

September 24, 2019

En pleno siglo 21 luchamos con la pobre educaci贸n y conocimiento que se tiene sobre la Hemofilia u otras enfermedades cr贸nicas padecidas en hombres. A esto le sumamos las creencias sobre roles y masculinidades que invitan a los hombres a no atender su estado de salud emocional. Existe un discurso social predominante a trav茅s de […]

Infusing Love: Remembering Sept. 11, 2001

September 18, 2019

Ver abajo para espa帽ol I鈥檓 pretty sure everyone in Puerto Rico remembers where they were when they heard of the planes crashing on the twin towers in New York. I was at the Conservatory of Music of Puerto Rico, studying for my second bachelor鈥檚 degree in music. I was sitting in the hallway trying to […]

Hemophilia Federation of America names VP of Advancement as Interim President and CEO

September 4, 2019

Sept. 3, 2019 After the recent resignation of long-time President and CEO, Kimberly Haugstad, Hemophilia Federation of America has named its Vice President of Advancement, Sharon Meyers, as interim President and CEO. Meyers, who began her role on Sept. 1, brings a wealth of experience to the position while HFA鈥檚 board of directors finds a […]

Infusing Love: Literally Driving Me Crazy!

August 29, 2019

One night I was cooking tacos for dinner. I was browning the beef and preparing to add the seasoning for the 10-minute simmer. I went to get the taco season package and the soft taco wraps out the pantry, when I realized I didn鈥檛 buy the soft taco wraps! There is nothing worse than realizing […]

Intern Introspective: Dylan’s Experience

August 10, 2019

Hemophilia Federation of America鈥檚 Policy and Government Relations Internship has come to a close for 2019. Last week, Jasmin shared her thoughts on the summer and this week we hear from Dylan. HFA is very grateful for all of the work Jasmin and Dylan have completed in 10 short weeks. We can鈥檛 wait to see […]

Intern Introspective: Jasmin’s Experience

August 2, 2019

Earlier this summer we welcomed our summer policy and governmental relations interns to our D.C. office. Jasmin and Dylan are part of the bleeding disorders community and were chosen to participate in a 10-week internship because of their leadership qualities and interest in the field of policy and advocacy. Throughout the summer, Jasmin and Dylan […]

Infusing Love: New Challenges

July 25, 2019

  Back in February Maddox鈥檚 provider suggested we try a new medicine. This medicine would allow him to be poked subcutaneously once a week, and with no need of factor replacement unless there is an emergency. After about six months on the new medication, we went in for Maddox鈥檚 yearly appointment, and removing his port […]

Intern Introspective: Summer in D.C.

July 19, 2019

  Jasmin and Dylan have spent the past seven weeks busy working on projects in HFA鈥檚 office. When they are not attending briefings, researching and writing their policy projects, and participating in team meetings, they are getting to know Washington, D.C. In this week鈥檚 blog, Jasmin and Dylan share how they鈥檝e made the most out […]

RECALL NOTICE: Bayer Voluntarily Recalling Factor 8 Product

July 19, 2019

The following is a press release from Bayer regarding a voluntary recall. PATIENTS SHOULD NOT USE THIS PRODUCT! Bayer is voluntarily recalling two lots of Kogenate庐 FS antihemophilic factor (recombinant) 2000 IU vials in the United States to the patient level. Certain vials from these two lots that were labeled as Kogenate FS actually contain […]

Infusing Love: Coming to Terms

July 18, 2019

  Omar was born in New Jersey, weighing close to 10 pounds. His second day at the hospital, I received the news of his hemophilia diagnosis. Initially, I felt isolated and alone and I did not know where to begin my search for information, assistance, understanding, and support. Despite that I had some knowledge because […]

Dear Addy: Back to School 2019

July 12, 2019

Dear Addy, My son has hemophilia and I鈥檓 nervous about his safety as he starts school this year. How can I advocate for him at school and make sure his bleeding disorder is understood? Signed, Nervous Nancy Dear Nervous, You are not alone 鈥 many families struggle with this experience! Taking a proactive approach to […]

Sangamo and Pfizer Announce Updated Results of Investigational Hemophilia A Gene Therapy

July 9, 2019

The following is an excerpt from a press release from Sangamo. Read the press release in its entirety here. Sangamo Therapeutics Inc., a genomic medicine company, and Pfizer Inc. announced updated results from the Phase 1/2 Alta study evaluating investigational SB-525 gene therapy for severe hemophilia A. The data showed that SB-525 was generally well-tolerated […]

HFA Given Highest Honors by Two Nationally-Known Nonprofit Watchdogs

July 8, 2019

  Hemophilia Federation of America is committed to transparency, a fact recently recognized when the organization received a four-star rating by Charity Navigator and a Platinum Seal of Transparency by GuideStar, two respected nonprofit watchdogs. With an annual operating budget of more than $6 million, HFA relies on a diversity of funding sources and is […]

Intern Introspective: The First Five Weeks

July 5, 2019

The midway point of our Policy and Government Relations Internship is an excellent time for Jasmin and Dylan to reflect on the first five weeks of their internship. In this blog post, they break down what an average week looks like for them as HFA interns and what the rest of the summer holds. Jasmin: […]

Infusing Love: Broken, But Not Beaten

July 2, 2019

    Winter weather has always raised my hemophilia mom radar. Icy sidewalks make me very nervous and I鈥檝e yelled out, 鈥淚ce ahead,鈥 many times over the last 15 years in warning to Thomas. But as we all know, we can鈥檛 be with our kids all day, every day and accidents are bound to happen. […]

Infusing Love: Tattoos

June 26, 2019

  Our son, Michael, recently surprised us with the news that he was going to get a tattoo! I know, I know, he is 26 years old and can make his own decisions.聽But he still has severe hemophilia B with inhibitors. I got that knot in my stomach that all moms get 鈥 it鈥檚 a […]

Intern Introspective: Hitting the Ground Running

June 21, 2019

Earlier this month, HFA introduced you to Jasmin and Dylan, our summer Policy and Government Relations Interns. Jasmin and Dylan have been busy in D.C., attending congressional hearings and learning the ropes of working for a national nonprofit organization. During their second week, Jasmin and Dylan experienced first-hand the planning and execution of our sixth […]

Infusing Love: Singing the Praises of Fathers

June 19, 2019

I have to admit this blog gave me extreme anxiety about writing.聽Not in the respect that my father (Thomas Gibson), my husband (Alan) nor my father-in-law (James Hooper) are horrible fathers. It鈥檚 just very difficult to express my absolute gratitude to these individuals.聽These three fathers and grandfathers play such an important and vital role both […]

Washington Wire: May 2019

May 30, 2019

Featured Story: CMS decides against allowing Medicare plans to limit coverage of 鈥減rotected class鈥 drugs. This past month brought some welcome news from the U.S. Centers for Medicare and Medicaid Services. On May 16, CMS released a final rule on drug pricing in the Medicare Advantage and Medicare Part D programs. In that final rule, […]

Infusing Love: An Undeniable Connection

May 14, 2019

If you鈥檝e ever attended HFA鈥檚 Symposium, you probably know that the mom鈥檚 rap session is usually one of the most popular sessions and quite often has the most profound conversations. If you haven鈥檛 been 鈥 a mom鈥檚 rap session is just that 鈥 a chance for moms to sit around the room and talk about […]

Washington Wire: April 2019

April 30, 2019

Featured Story: Some relief ahead from accumulator adjusters. Finally some good news regarding accumulator adjusters! Patient advocates, including HFA, have been warning lawmakers that accumulator adjuster programs threaten access to care for people with chronic health conditions. In recent weeks, state and federal lawmakers signaled they have heard this message and took steps to rein […]

Sangamo and Pfizer Announce Phase 1/2 Interim Data for Investigational Hemophilia A Gene Therapy

April 15, 2019

The following is an excerpt from a press release from Sangamo Therapeutics. Read the press release in its entirety here. Sangamo Therapeutics Inc., a genomic medicine company, and Pfizer Inc. announced interim data from the Phase 1/2 Alta study evaluating investigational SB-525 gene therapy for severe hemophilia A. Data indicate that SB-525 was generally well-tolerated […]

Infusing Love: Seasons of Change

April 10, 2019

  Life is full seasons, parenting is full of seasons, and most importantly raising a child with a bleeding disorder is full of seasons. Most often when I look back over the seasons the most obvious of seasons are that of survival, like getting from one day to the next or one walking through a […]


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