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News & Perspectives

Infusing Love: This Is Us

March 22, 2017

  My mighty warrior, Caeleb, still has an inhibitor. His Bethesda Unit (BU) is less than one and his half-life is less than four hours, so we have a ways to go. His BU has reached zero a few times, and I was thrilled! It was a victory, and when you live with an inhibitor […]

Patients’ Genetic Privacy Threatened by H.R. 1313

March 21, 2017

Congress is currently considering legislation that would undermine patient privacy and workplace non-discrimination protections for individuals and families affected by genetic conditions. This legislation, the Preserving Employee Wellness Programs Act (H.R.1313) was approved by a House committee earlier this month. Under existing law, an employer can run a 鈥渧oluntary鈥 workplace wellness program 鈥 and can […]

Dear Addy: Nation’s Blood Supply

March 20, 2017

Dear Addy, How is the nation’s blood supply managed, and how do we know if it’s safe? Sincerely, Searching for the Best Blood Dear Searching, The US blood supply system is managed by a number of major organizations, including federal agencies. They oversee two types of blood collection activities: (1) the collection of the cellular […]

Infusing Love: 隆S茅 agradecido!

March 15, 2017

No importa en la circunstancia en que nos encontremos siempre tenemos una raz贸n por la cual estar agradecidos.聽聽 A lo largo de mi carrera como maestra de escuela elemental por m谩s de 15 a帽os y ahora como coordinadora de programas en HFA, he tenido la oportunidad de conocer a muchas personas. Maravillosas personas con caracter铆sticas […]

Infusing Love: Being Bored Isn鈥檛 A Bad Thing

March 8, 2017

I always look forward to reading the weekly Infusing Love Mom Blogs. I enjoy reading about the lives of other caregivers and their perspective on their particular journey or story they take the time to share with readers. I usually have something noteworthy to write about. With three active kids who have chronic illnesses, one […]

Dear Addy: Advocacy Committee

March 6, 2017

Dear Addy, I really want to help my local organization grow its advocacy efforts by starting a committee. However, I’m overwhelmed by the process. Where should I start, and how do I maintain an advocacy committee? Signed, Committee Quandary Dear Quandary, Creating or joining an advocacy committee is a great role if you are interested […]

Fit Factor: Tips to Take Your Exercise Routine on Vacation with You!

March 6, 2017

Whether you are escaping the winter weather for some R&R by the beach, or heading to a relative鈥檚 home to catch up, travel disrupts your normal schedule and can make it harder to stay on top of your health and fitness routine. Working out is often easily forgotten on vacation as other activities take priority. […]

Infusing Love: We Are Family

March 1, 2017

  Since my son Thomas was born thirteen years ago, I鈥檝e come to think of the bleeding disorders community as family. Relatively speaking, that feeling came to us very quickly after meeting people in the community. My husband and I jumped right into attending events, volunteering, and generally asking questions of medical providers and anyone […]

Hello world!

February 23, 2017

Welcome to WordPress. This is your first post. Edit or delete it, then start writing!

Spark Therapeutics Announces Phase 1/2 Gene Therapy Trial for Hemophilia A

February 23, 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聽here. Spark Therapeutics has announced that its Phase 1/2 trial for the investigation of gene therapy for hemophilia A (factor聽VIII deficiency) has begun. This trial will initially be enrolling participants at the Children鈥檚 Hospital […]

Infusing Love: Laugh or Cry

February 23, 2017

Anyone who knows me or has read any of my previous blogs, knows that our household basically revolves around baseball. If the weather is nice and I鈥檓 not at work, I鈥檓 at the baseball field. Sometimes it makes life a little crazy, but it makes Nick really happy and that is what鈥檚 most important. My […]

Breaking Clinical Trial News from Genentech/Roche

February 22, 2017

The following is the full statement from Genentech/Roche regarding the recent death of a 41-year-old hemophilia with inhibitors patient who was participating in the HAVEN 1 study. Dear members of the Haemophilia community, At Roche, we respect and value the close relationships that exist within the haemophilia community. We also understand the important role patient […]

Dear Addy: Social Media

February 20, 2017

Dear Addy, I often hear about using social media to engage policymakers and spread awareness to friends. Does this really work? How can I advocate on social media without being annoying or preachy? Signed, Social Media Maven Dear Maven, Social media can be an excellent platform to raise awareness for an issue or cause you […]

Infusing Love: Six Lessons Learned

February 15, 2017

  A lot has changed since my daughter was diagnosed with a platelet storage pool deficiency in 2011. Initially, there was little information and case studies to look to for reassurance. Not having a treatment plan led to many fears, doubts, and unknowns and wondering if I could make it through another injury or trip […]

Infusing Love: The Right Time

February 8, 2017

聽 There is this one conversation I鈥檝e had repeatedly with dozens of parents over the past ten years. It always revolves around our desire to be protective and shelter our kids. A child鈥檚 early years should feel safe. However, we know they cannot stay innocent forever. We do want them to grow up to be […]

7 Ways to Stay Active in Winter

February 6, 2017

We all know that working out in the winter can feel like an impossible feat at times. However, once you start making it part of your regular routine, it鈥檒l turn into a simple task and become easier to sustain through other parts of year when the weather isn鈥檛 so harsh. Keeping your body healthy and […]

Dear Addy: Out-of-Pocket Expenses

February 6, 2017

  Dear Addy, I just got my daughter’s January EOB, and I realized that my family is now responsible for up to $14,300 in out-of-pocket (OOP) expenses. Why did this amount go up $600, even though we kept our same insurance? And how can I afford this?!? HELP! Signed, Anxious about OOPs Dear Anxious, High […]

Infusing Love: Bleeds Hurt

February 1, 2017

  A couple of months ago, my 8th grade son with hemophilia had 鈥淔uture Bruin鈥 night at the high school he will be attending next year. Any time we have to think about making a school move with him it induces anxiety for me as I start thinking about the process we鈥檒l have to go […]

Bioverativ Officially Spins-Off of Biogen鈥檚 Hemophilia Business

February 1, 2017

Note: The following is an edited version of a press release from Bioverativ.聽Read the press release from聽Bioverativ聽in it’s entirety聽here. Today, February 1, 2017, Bioverativ聽launched as an independent, global biotechnology company focused on the discovery, development, and commercialization of innovative therapies for hemophilia and other rare blood disorders. Bioverativ is formed by a spin-off of Biogen鈥檚 […]

UniQure Receives FDA Breakthrough Designation of AMT-060 Investigational Gene Therapy

January 30, 2017

______________________________________________________________________________ Note: The following is edited from a press release from UniQure. Read the full press release in it鈥檚 entirety聽here. UniQure announced that AMT-060, 聽its proprietary, investigational gene therapy聽in patients with severe hemophilia B, has received Breakthrough Therapy designation by the U.S. Food and Drug Administration (FDA).聽 This designation is based on results from the […]

Millennials Get Busy- Advocacy for Young Adults

January 26, 2017

By Sarah Shinkman Learning how to advocate is an important life skill at any age. Whether you are practicing personal, peer, or group advocacy, you have the power to influence decisions that may affect you and others. HFA鈥檚 final Young Adult Hangout of 2016 featured two community advocates and a health insurance overview by Erin […]

Infusing Love: I鈥檒l Be Ready

January 25, 2017

Every day, I am reminded of how quickly time passes. My kids will only be little for a very short period of time. As working parents, we always tend to wish the days away in order to get to the weekends when we can take a deep breath, relax, and prep for another busy week […]

Okay, So What Can We Do?

January 24, 2017

By Lori Long and Sarah Shinkman “Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” -Margaret Mead To find an example of the type of group Margaret Mead speaks about in her famous quote, look no further than our bleeding disorders community. […]

CDC Describes New Method to Detect Specific Antibodies in Inhibitor Development

January 24, 2017

Note: The following is an abridged聽form of an article from the聽Centers for Disease Control and Prevention(CDC). The original full-length of the article聽can be read聽here. The Centers for Disease Control and Prevention (CDC), along with researchers from聽the聽Hemophilia Inhibitor Research Study (HIRS), have recently published two articles in The Journal of Thrombosis and Haemostasis. The articles describe […]

Dear Addy: Self-care

January 23, 2017

Dear Addy, With the holidays behind us, I鈥檓 trying to focus on taking care of myself in the new year. However, I struggle to do this between family, work, and social obligations. Can you provide some tips on self-care so I can be a better advocate for myself and my family? Signed, Stressed Out Dear […]

Infusing Love: Now What?

January 18, 2017

聽 This week the Infusing Love Mom鈥檚 Blog will tackle a touchy subject: What happens to health care in 2017? Is there a replacement for the ACA that will offer support and protections? Whether your politics lay left, right, or center, as a community, we all live with having bleeding disorders in our lives and […]

Infusing Love: Single But Not Alone

January 11, 2017

Being a single parent is challenging for anyone. Being the single parent of a child with a severe, costly chronic illness comes with its own set of issues. I remember the times that Max unable to attend events that were geared toward fathers and sons. I once called our chapter office when Max was around […]

HEMA Biologics Receives FDA License for New Recombinant Factor VIIa Product

January 10, 2017

Note: The following is edited from a press release from PRNewswire.com. Read the full press release in it鈥檚 entirety聽here. HEMA Biologics, LLC announced that the FDA has accepted the Biologics License Application(BLA) for their first potential product for commercialization in the United States.聽 The acceptance of the BLA for Coagulation Factor VIIa, Recombinant (eptacog beta […]

Community Member Spotlight: Shawn Nease, Organizer of Delves for Donors

January 9, 2017

  For the second year in a row, Shawn Nease organized a charity game of Dungeons & Dragons, a fantasy tabletop role-playing game, to raise money for HFA鈥檚 Helping Hands Program. Delves for Donors II: Out for More Blood offered gamers in Maryland and Eastern Pennsylvania the opportunity to purchase a seat in a two-hour […]

Dear Addy: Workplace Disclosure

January 9, 2017

Dear Addy, I just accepted my dream job, and I can’t wait to get started. Unlike my last job, however, no one knows I have a bleeding disorder. When should I approach my new employer with this, and how much should I share? Sincerely, New Job Jitters Dear New Job, You only need to disclose […]


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